Parlerai is the World’s First Social Collaboration Network for Children with Special Needs and Their Families, Friends and Caregivers. Parlerai creates a secure network of family, friends and caregivers surrounding a child with special needs and uses innovative and highly personalized tools to enhance collaboration and provide a highly secure method of communicating via the Internet. The company offers a wide range of products and services designed to harness the power of the Internet for children with special needs – at any time, at any place, on any device. There are tools for parents, tools for children and tools for caregivers.

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Al-Ubaydli: Welcome to the ‘Patients Know Best’ podcast. My name is Mohammad and I am here today with Jon Erickson from Parlerai. And Jon, I am sorry, I should have said Parlerai.

Jon, thank you very much for coming on the show.

Jon Erickson: Hello! How are you?

Al-Ubaydli: Jon, I was really interested to hear about your company, because both you and I are on the same panel, the State of the Cloud Conference in Boston, and then as I read more about your work, I was really keen that you do a podcast with us.

So Jon, tell me who you are and how you got started in doing Parlerai?

Jon Erickson: Sure. First of all, I have had a long career in technology with big enterprise. I worked at Fidelity Investments for quite a while, and in fact, I worked for Colt Telecom in London for a few years as well.

And while I was living in London with my wife, we had a daughter who was born with special needs, and going through the process of having a child with special needs and severe disabilities, my wife, Kristin, and I really saw an absence of tools for a parent to manage the people and information around the child, as well as a lacking of technology for children with special needs.

And part of this grew out of a frustration where I saw big enterprises, big corporations, had these wonderful tools and utilities, and we said, why can’t we make these available for families and parents and those with special needs?

And with the growth and prevalence of social networking and touch-screen technology and open source software, it’s becoming increasingly simple and easier and cheaper to build these services.

So two years ago, my wife, Kristin, and I decided to do something about this and we started Parlerai as what we call an Augmentative Collaboration service for families with special needs.

Al-Ubaydli: So what does a parent who uses your software, what do they do with it?

Jon Erickson: Well, what happens is a parent would subscribe to a service and they create a network on our website. I mean, we are a web service. So a parent creates this network around their child and then they invite people into their child’s network. These people could be parents or teachers, grandparents, friends, family, doctors, aids, you name it. But they are people that are involved with the care of the child.

And then the parent will put information, whether it’s IEP information, medical record information, whatever is important to that parent regarding that child, for sharing and collaboration.

We also provide tools so that a parent can track and trend data; data that’s important regarding their child, whether it’s the therapy they take, the types of medication they take, you name it. We are a very flexible system. So the parent goes through and creates this network, creates these utilities, and they use it to share and manage information.

Al-Ubaydli: So why — I guess you started this because your family itself found it so useful. So why do the different parents find it so useful and so necessary to use that website?

Jon Erickson: Because in reality, when you have a child with special needs, you don’t just go to one doctor, you don’t just go to one school, you actually will have multiple hospitals, multiple schools, multiple institutions, different aids, different therapists, different teachers. And the amount of information associated with this child is staggering.

We saw this while my daughter was born in London. She was born in the Portland Hospital for Women and then she transferred to Great Ormond Street Hospital, and then also being American, we came back to the East Coast, where she has been in the care at Tufts-New England Medical as well as Children’s Hospital Boston. These are all great hospitals, these are all great institutions, but how do we share that information across the different groups?

(00:05:07)

And then in the case of our daughter, we started exploring alternative methods in treatments and so forth. So there is no single tool or repository that any of these institutions can make available. So we thought we would do something for what we call the institution of parents. There needs to be a platform for them to manage their information.

Al-Ubaydli: Yeah, I agree. I am sort of thinking back to my parents, when I was first diagnosed with my genetic immune deficiency. I mean, I always say that the network has to be centered around the patient rather than the patient checking all these multiple sites for these multiple doctors and nurses, because at the end of the day, the only person who turns up to all the appointments is the patient, and so you want to make sure that they are the ones who have the data and then they share it with everyone and they coordinate all the care.

Jon Erickson: That’s correct, I completely agree with that.

Al-Ubaydli: So as sort of parents begin to sign up to use your software and begin using the website, what kind of advice do you have for them?

Jon Erickson: Well, what we do is — the advice we have is, first of all, invite the people into your child’s network that are important to them, and what you will find are those people will participate because the people that are in this, involved with the child with special needs, really do care and will do whatever it takes to improve the quality of life. That’s number one.

Number two, there are lots of capabilities that Parlerai has. In addition to the Collaboration utilities, we have tools for the child themselves, from an assistive communication perspective. We have several tools where the child could use this to communicate and also use the Internet. So to get that set up and applied for their child is also useful.

Al-Ubaydli: And in fact, the kind of people that should be invited, obviously the doctors and nurses, family, relatives, and are there other people, special workers, who else is useful?

Jon Erickson: Yeah, and actually to get back to your prior question, really the most popular utility that we have is what we call, What I Did Today. And it’s a data tracking and data trending utility. And what we suggest is to create that template of the things you want to track on a regular basis, whether it’s physical therapies or speech therapies or medications or what have you, and get that template set up.

So to answer your question, the people that are involved with your child on a day-to-day basis or weekly basis, they are the ones. And these people are typically the aids and therapists and teachers, because when you have a child with special needs, keeping them up-to-date and informed about the child’s mood, feelings, medications, whatever it may be, are important. It’s this day-to-day quality of life that affect a child and the families and those involved with the child.

So it can be anybody. I mean, in many cases, using this, family members that live in other parts of the country or the world can stay up-to-date, because as we track this information, we provide updates via text and email messages, so that my daughter’s grandmother, as an example, can stay up-to-date on my daughter, even though she lives a 1,000 miles away.

Al-Ubaydli: I can see the family members wanting to be kept very frequently up-to-date. How do you find the professionals, so the doctors, the teachers, do they want to be kept, sort of a daily email, or do they find it useful to log in on occasion to see the sort of two-week history, and it’s the look back that they find useful rather than the update they find useful?

(00:09:55)

Jon Erickson: Well, obviously certain doctors and people don’t want to receive these frequent updates on a daily basis. Our system has the complete flexibility where the parent controls what information is being sent to whom and when.

So for people like that, we don’t give them those daily updates, but when you go in for your annual meeting with a geneticist or what have you, you can query a report, you can pull up statistics and make them available as needed. So we have that flexibility in there to account for these differences. It comes down to the parent, knowing who needs to receive what information and when.

Al-Ubaydli: So what have you learned from watching these parents using the software?

Jon Erickson: Well, one of the biggest things we have learned are, those parents that are actively engaged and involved with managing their child, love us. They love the concept and they jump right on it.

I mean, there’s always going to be those folks that, they are just so overwhelmed that it can be a bit of a challenge. But for the parents that are actively engaged in managing things, they jump right on.

There is also those people that still are hesitant to use things on the Internet, and that’s going to come with time. We don’t solve all problems for all families and the fact is we are just trying to make things as easy as possible.

Al-Ubaydli: Have you watched them develop particular habits that you haven’t even thought of accounting for when — I guess you would have designed this for what’s useful from what you know as parents. Have you seen them do things that you weren’t expecting?

Jon Erickson: Yes, and we get a lot of our best suggestions from these parents. And one of the things that’s great is this is a company that my wife and I own outright and when we get suggestions from parents about adding a feature, a capability, we can quickly respond and do it. It’s not as if we are a very large corporation that may take a year or two. Kristin and I are trying to do the things that have the most valuable for parents.

Certain examples are the use of certain symbols in our library, or just simply instructional videos of certain nature to really help things. Things that we thought were intuitive might not be intuitive to someone else. So we are always adding features and capabilities in this regard.

Al-Ubaydli: Jon, just go into a little bit more detail about the symbolic tools you were describing, because they were really interesting when you were describing them to me early on.

Jon Erickson: Yeah. Well, Parlerai has the concept of a library where we can share information in media. What we have done through a couple of partnerships is make available the use of PEC symbols, from Pyramid Educational Consultants.

So every user of Parlerai that needs access to some uniform PEC symbols have access to this in our library and they can use that with our ChoiceMaker tools, what I did — not what I did, but the Messenger tool.

And then we just arranged a second agreement with another company called SymbolStix just last week, and I think on April 10 is when those features will be available, and those include another 12,000 symbols.

So in total, we will have almost 15,000 symbols as part of the Parlerai library for all our users. So for those really requiring the assistive communication features that we offer, that’s a big benefit.

Al-Ubaydli: Okay. I mean, that was a really interesting special needs application that I was sort of intrigued by when you were describing it. When people start using this service, and this is both as a parent as well as the professional, what do they worry about that they shouldn’t, because they are kind of new to this area?

(00:15:05)

Jon Erickson: Obviously the biggest concern we get are, getting their teacher to use it, the teachers of the children. They typically will say, well, I am not sure my teachers and aides will use this. Those are fair comments. But the way we have structured our arrangement is, a parent pays for the service and then they can have users participate in the service as part of their child’s network. Those people are free, and because it’s free, because it’s easy to use, and it actually saves those people time. Once they understand that, those objections typically go way.

We have had great success with several schools in the area, where we simply need to explain what is Parlerai. I mean, we are a new service so they want to understand it. But once they see that, it’s been completely embraced. So there are objections, but they are, generally speaking, easily handled.

Al-Ubaydli: And then conversely, what do you think people should worry about when they begin, that they are not usually aware of until later on?

Jon Erickson: That’s a good question. The biggest thing is simply collecting all of their information in one place. Many people have that in hard copy format or many people assume that a single institution, such as a hospital or a school, is going to solve this problem for them. But that’s not the case. They are not going to be able to do this for all of their information. So having a single source of data, a repository that spans these different institutions is what’s important.

Al-Ubaydli: That’s interesting. I mean, in the UK, for example, there are attempts to centralize daycare for patients and there are some serious privacy implications to that. But the thing I find most interesting when I am talking to patients about it, they are often surprised to find out that their doctors don’t actually talk to each other, that they haven’t done the data sharing that’s important for the patient. So it falls upon the patient or the parent of the child to do that, and no one else will be able to care as much about it as you do.

Jon Erickson: I completely agree with that. When you consider, a patient or a child may go to different doctors, alternative care or alternative treatment. I mean, my daughter, for example, goes to a chiropractor. She goes to — she does hippotherapy at a stable close by. She does all of these different things that may not have anything to do with whatever medical treatment she is receiving, but they are pertinent to her care and well-being and it does need to be tracked. So no matter what, a single institution is not motivated, nor does it have the wherewithal to solve this problem.

Al-Ubaydli: I am just coming back to one of the things you mentioned about inviting the professionals to look at this data. So when a parent invites the teacher, is there a particular sort of advice you give them in sort of how to phrase it for the teacher, or is it literally, all the professionals — all the teachers care about the child and they would just — as soon as they have the free part explained to them, then they are more than willing to register and sign up?

Jon Erickson: The first thing is that, we include this as part of our invitation process. So once you sign up, you simply need the email address of the person you are inviting, and you send it to them. And there’s certain information that will be provided within that email, as well as the terms of use.

(00:19:56)

Right now we are very motivated for the success of this and we will take the time to communicate directly with that school.

If it’s a teacher, typically what happens is, the teachers get so excited, they want to tell other people about it and then they want us, from a Parlerai perspective, to do a webinar or a presentation or what have you. So it’s all very positive. It takes time. We are a new thing, so there are times where we have to say, why would a school want to do it?

Then of course they have their own concerns about whether it’s security or electronic records, we have to describe how we manage that information. But at the end of the day, it’s a service paid for by the parent who is responsible for the care of the child.

Al-Ubaydli: That’s what it comes down to in the end is, what kind of privacy issues of data sharing is. If it’s the parent, on behalf of the child, making the decision, then they have already decided this is the best thing for them and everyone can just join in, because that’s what the parent wanted for the care of that child.

Jon Erickson: That is correct. When people realize that, it makes them feel empowered.

Al-Ubaydli: Yeah. Just before I move on Jon, remind me what Parlerai means? What does that word mean?

Jon Erickson: Parlerai means shall speak in French. The reason we came up with this is twofold. We wanted something that reflected our desire to help children communicate, so the concept of speak.

Then the second one is more personal to my wife and me. When our daughter was very, very young, she would only smile and react when we spoke French to her. She reacted very positively, nuances. So it just kind of happened that way, and it’s just more of a personal thing, and it just stuck.

Al-Ubaydli: Do you have any users in France, by the way?

Jon Erickson: We have — no, not yet, although we did speak with someone recently. We do have users in Sweden and England and a few other places. We are slowly growing. I haven’t checked lately, specifically in France, but I do know we have had some folks from France download our iTunes app recently. That’s a fact.

Al-Ubaydli: I am glad you brought that up. So you are bringing out an iPhone app?

Jon Erickson: Yes, we actually have our first version of an iPhone app available now. It’s a free download, but you have to be a user of Parlerai to take advantage of it. What this particular version does is it’s our What I Did Today tool. So it’s the data tracking components.

That being said, our second release of this iPhone app will be available in the month of April, which will have our ChoiceMaker capability, which is our Augmentative Communication function. So with that you will be able to use all of our PEC symbols and SymbolStix symbols and anything else on our library for assistive communication. We expect to have that available in the month of April. That also is a free download.

Actually, we are very excited about that, because it will be roughly the same time frame as the new iPad app.

Al-Ubaydli: I was going to say, this is great for April 3.

Jon Erickson: Yup. So we are very enthusiastic about Apple’s iPad and we think the Parlerai application will be a very fantastic asset from an assistive communication perspective.

Al-Ubaydli: That’s really interesting. I guess when I see you in April; I guess you will have the iPad by then.

Jon Erickson: I just received notice that mine is being shipped today.

Al-Ubaydli: Congratulations! Jon, is there anything you wished I had also asked you about that I shouldn’t forget to discuss today?

(00:25:05)

Jon Erickson: Actually, just one point to make. Even though we are a service that we have targeted for children with special needs, anyone requiring a little managed care can benefit from it.

For example, we know elderly folks that are in assisted living or even at home and they have people that come in and look after them, those families use Parlerai to stay up-to-date on what’s going on with elderly people within the family. That person themselves may not use Parlerai but everyone else does. So as I said, even though it’s targeted for children, anyone can benefit from us.

Al-Ubaydli: That’s interesting. The problem is the same across these groups, which is, you have a patient who has, lots of people from lots of different environments and social contacts to care about them and who need to coordinate their care. So what’s interesting to me is, I guess, as you begin reaching the much wider population of people that benefit from the 26:21 of these groups. I don’t know what point you begin considering changing the marketing on your main website, or whether it’s a different brand, but some kind of explanation that this is a generic solution that applies to any disease rather than just the initial disease group that you began for your own personal — for your own family.

Jon Erickson: That’s correct. I mean, we thought about doing this on a diagnosis basis. For example, cerebral palsy or autism or what have you. But what we did is, we built in enough flexibility within the tool to customize it for however you need, and we would probably continue to add features based on that.

That being said, we have considered branding this differently for different market segments, such as the U.S. military or like another large organization that supports a particular diagnosis. But we are a startup and we can only do so much so fast, but we would certainly — we have these thoughts, we were able to do that when the time is right and we will see how it grows.

Al-Ubaydli: Jon, I am really looking forward to seeing the growth. I am very pleased about the work you are doing. I know my parents would have loved to have a tool like that 20 years ago. So keep up the good work and thank you very much for joining us today.

Jon Erickson: Thank you very much, I appreciate talking, and I look forward to seeing you in a few weeks.

Zume Life supports you as you follow through with you individual health regimen and wellness program. The Zume Life personal health management system enables you to have on-going health activities (such as for chronic disease, weight loss, or treatment recovery) to draw inspiration and support from those in your personal support network, and helps you better track and adhere to your programs and regimens.

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Mohammad Al-Ubaydli: Welcome to the Patients Know Best Podcast. My name is Mohammad and, today, we’re lucky to have Rajiv on the Phone.

Rajiv: Hi, Mohammad!

Mohammad Al-Ubaydli: How are you doing Rajiv? Rajiv, give us some background about yourself, and how you got started in all of this?

Rajiv: Well, my background on the whole is for the last 20 odd years or so I have been involved in really driving forward a radical innovation, disruptive innovation in a wide variety of fields from photography to laser technologies and wireless and so forth. But for the last several years, I have been focused a lot on health, on helping individuals have more success with their own health efforts which led to a company that I started-up, called Zume Life, as well as a lot of consulting and writing in this space that’s what brought us together.

Mohammad Al-Ubaydli: So, given the pretty interesting background what made switch, now is the time that you’re tacking healthcare?
Rajiv: It’s never that clear that there’s some particular thing that happened. This is sort of a combination of a couple of things. One of my good friends and one of the co-founders of Zume Life was someone who’s been involved in healthcare her entire career; med school, practicing physician in the healthcare industry and so forth.
For a very long time ever since she graduated from medical school, we’ve had this conversation about what is health really, and what is the role of the physician? In essence once she started practicing as a doctor, she came to this realization that well in fact there’s not a whole lot she can do about people’s health because most of it happens elsewhere. Doctors are there to deal with the acute issues, emergencies, and so forth; but on the whole, they can’t really do much else because – well they don’t live with you 24 hours a day.

So, we had this conversation over a long time about what the challenge is, what that means. A few years ago things came together where from a professional perspective we were both in a position where we could start working on something together and we had the germ of an idea of a product or solution or the approach to people’s problems that may bare some fruit, which then lead us to start this company Zume Life.
So since then about, since the last four year I’ve been just very heavily focused on both understanding the challenge of health and well-being from the person’s point of view and then what kind of solutions, what kind of products, technologies, services could be developed that would help people do that.

Mohammad Al-Ubaydli: So tell what the company does? What are the kinds of products you offer to individuals?

Rajiv: So what Zume Life did was start off at the basic challenge as, of initially we started off focussing on the challenge of compliance in the US at least, it’s often referred to as adherence, it’s supposedly a more PC word but basically the issue is the difficulty people have in following through with their doctor’s recommendations.

Again, this a well-known phenomenon that happens everywhere and the usual approach, the usual mindset of this has been that people failed to comply either because of a lack of education so they don’t know that they really should do this or a lack of motivation and the idea is perhaps we can educate them more or we can provide more carrots or sticks to get them to do the right thing.

A lot of solutions have been developed along that line, a lot of interventions. Our perspective started off being rather different, in the sense that we noticed that even people, well like the two of us on this podcast who are very well educated, are able to do very complex tasks in other fields. We set ourselves goals and are able to achieve them and so on and so forth, we have just as much of a problem with compliance as anybody else.

So, it’s apparently not simply a problem of education, awareness, motivation and as I looked into some more, it became obvious that in fact the challenges are much more fundamental in the sense life is busy than these tasks of caring for yourself is just part of a daily laundry list of things that must be done and certain things drop of the plate and certain things get done.

So, it’s more of challenge of logistics that needed to be addressed first and foremost. It’s not particularly helpful to point out to people that why you’re not doing something if they’re simply not able to do it. And we felt that a lot of the healthcare regimens that doctors ask us to follow are at a very practical sense logistically impossible in our busy lives.

So, the goal was to develop a solution that helps people with that. And so the Zume Life solution that we developed, we developed a prototype and so forth and tested it extensively over time, it helps people do that, it gives them reminders in a very sophisticated way for anything that they consider health related that requires reminders. It helps them keep track of anything and everything that’s health related primarily from the perspective of helping them get through their day, basically reducing the hassles of life.

As a side benefit, almost, it turned out to be a very valuable side benefit; but as a side benefit, the fact that all of this information was tracked then makes it a lot easier in the long-term to maintain health. Both you and your caregivers can see a lot of patterns, trends, correlations, and so forth that can impact your health.

Mohammad Al-Ubaydli: This is a very interesting area that you’re working on and by the way just as a side point, your mention of the new word for compliance being adherence in. So when I was getting through medical school that was the kind of generation where they try and teach us that you don’t say noncompliance, you say non-concordance. The reason is compliance; it basically implies that the doctor has the correct opinion and the patient is obeying it. Whereas, Malcolm Gordon says, “The doctor has an opinion and the patient has an opinion and the two opinions happen to be different, but we’re not making any judgment about who’s correct it is that we happen to disagree on.”

Rajiv: That’s right and that’s a valuable perspective. What we noticed was that we, as individuals, are not so successful in adhering or complying with our own self-defined regimen.

Mohammad Al-Ubaydli: Better learn someone else’s right?

Rajiv: Yeah, never mind somebody else, if you can’t do what you yourself decide to do then there’s something else going on.

Mohammad Al-Ubaydli: That’s interesting. I think pretty much everyone knows now that smoking is bad for you right? But that’s not the barrier to stopping smoking, people know that it is bad smoking.
Rajiv: That’s right and in fact it brings us to what I think is really accord to this, and this is, these are 8 years back I found as I looked into it, in many other places I found that these are not particularly novel but never mind they were new to me, which is, when we’re dealing with these issues of health and especially as you and I are looking to develop solutions, products, services that can impact health.
We know that framing the problem is critical to developing a good solution, if you define the problem one way, you’ll try to develop solutions for that. If you defined it a different way, you might develop other kinds of solution.

So framing what is the problem is really, really important and in this challenge of developing solutions in fact I believe that we’re framing the problem incorrectly. This is despite sort of a long-term view that’s different from the way that healthcare is actually implemented. If I could take a moment to explain this thinking, the frame of traditional healthcare is really around eliminating or minimizing acute diseases or infirmities. Something nasty happens, you go to see the doctor and he helps you get back together.

So on those circumstances it’s really the healthcare professionals that take the lead, with your permission, take the lead and applying the tools of the trade, the medicines and therapies and so forth, and medical science has developed, to deal with this acute issue. It’s a very professional centric point of view because in fact they’re the ones that have the expertise to do something about it. As we moved on to the issue of chronic illnesses, chronic conditions, we have still applied this traditional mindset, this traditional frame and altered just a little bit and called it health management. But we still end up with medicines and therapies that are prescribed by physicians and we as patients are supposed to follow them, but that’s really the approach.
In fact, even today in some of the advanced thinking on health solutions, we talk about moving to patient centric care. However it’s still patient, and a patient is sort of a subservient to the experts, the physicians. And so again this is very much kind of a medicine folk centered view of health. But in fact health is much, much broader than that and we see that in the lack of success of a lot of these patient centric health related approaches.

The kinds of traditional approaches that have come from this traditional frame of health management includes giving kind of a long list of suggestions, recommendations to us, patients, ranging from the trivial of take your medication as directed to things like walk 10,000 steps a day, or get eight hours of sleep, or there is ever more rules on what you are supposed to follow with regard to your diet.

We know that most of us don’t seem to pay very good attention to these things. We have also developed a lot of tools but they’re often very narrow pathologically focused solutions, we have a solution for asthma, you have a solution for chronic heart failure, we have got pill reminder systems, you’ve got trackers for diet or exercise, you got these biometric devices, they are very narrowly focused kind of very medically defined, very pathologically focused solutions.

As we know even the best of them have had relatively modest impact on health. I mean we celebrate when we notice in clinical trials that you got 5% improvement on this population versus that population. I don’t want to smear at the progress, because even that has been a hard one and yet it’s just such a small change that’s not what we’re looking for.

From my perspective, we really need to step back and one place to step back is if you look at the World Health Organization’s definition of health that they adapted gosh back in 1946, 1947, whenever the organization first got set-up.

It’s something along the lines of health is state of complete physical, mental and social well being and not merely the absence of disease and infirmity. And that later phrase not merely the absence of disease or infirmity is part of the definition.

Mohammad Al-Ubaydli: They explicitly say that in the WHO founding document.

Rajiv: Exactly I mean their definition of health is that simple sense, health is a state of complete physical, mental and social well being and not merely the absence of disease or infirmity. But this is not novel thinking and yet obviously in the day-to-day sense of healthcare it’s not at all taken, that is not the fundamental. The fundament is disease and infirmity.

So even though there have been many greater thinkers in the past who view health in a much broader way that’s not the reality of our healthcare institutions or most of our healthcare practices. But if we accept that health is this much larger thing, then you can understand that health is impacted by far, far more than medicine. At a very sort of simple simplistic view perhaps the absence of things like earthquakes and war or the presence of clean water and air has more to do with your health than practically anything you can do yourself.

Similarly, in the UK there has been these wonderful long term Whitehall studies that have shown that in fact the largest, one of the largest factors with regards to your health is your work environment. More specifically the thing that they have noted is more important than anything else is the level of autonomy you have with regards to your homework.
So whatever your work maybe, do you have the freedom to sort of just go about and do it or are you micromanaged. Yeah it’s a very trivial, trivial description of their work.

Mohammad Al-Ubaydli: So this not just that if you work in coal mine you might get a number of diseases from that, it’s actually, white collar worker and the degree of autonomy you have is that they get, or one of the biggest indicators about your health.

Rajiv: Far more than your own health habits astonishingly. So if you are not familiar with these, you should look it up, it’s called the Whitehall studies. And as a brief background it started off, I think the first Whitehall study was done in the late 60s and the shocking discovery at the time was that there was a very dramatic health gradient with respect to, if you will, the pay scale but it was opposite of what they had imagined.
They had imagined that the further up you got in the British civil service, the more stressful your job and therefore greater incidence of heart disease and so forth. What they found was the direct opposite. In a sense, the closer you got to the mail clerk the higher incident of health issues and the closer presumedly you got to the Prime Minister, the lower.

Mohammad Al-Ubaydli: And that was causative, so it wasn’t that you got to be Prime Minister because you had better health, it was because —

Rajiv: So that was Whitehall I was merely the collection of the data that resulted in this observation. Then the Whitehall II studies were started I believe in the late 80s and they continue, extensive studies of the civil service in the UK that have gone deeply into understanding what’s this all about, why is this so, and to understand in much greater detail.
So, those have been ongoing and again I’m trivializing their extensive findings by saying that the most important factor in the person’s health turns out to be sort of the level of flexibility and control they have over their own tasks. It’s far and more important than your own health habits and so forth.

I bring this all out just to point out that when we think about a person’s health, there is a lot that is completely outside the control of the individual or their healthcare providers and to the extent that we try turning the dials on things that the physicians and the patients can do without appreciating the larger context, we’ll never have a whole lot of success.

Mohammad Al-Ubaydli: That’s interesting, so thinking about the sort of 16% of the U.S. economy that goes on healthcare funding, that’s making a very small contribution relative to the much smaller spending on infrastructure for road, sewage, education, people having control over their life that actually makes a big contribution to healthcare?

Rajiv: Yes, yes and the many large corporations are extremely concerned about their health requirements of their employees primarily from a productivity perspective or a healthcare cause perspective. So there is all of these wellness programs and so forth which are well intended, but if we take the Whitehall studies to heart, the changes that have to happen are in sense outside the individual. It’s how is the organization, run, managed.

Mohammad Al-Ubaydli: They started to give me incentive to become Prime Minister.

Rajiv: Well, there you go. Let’s put aside these things that are in a sense outside the individual’s control. Even within the things that are in the sphere of the individuals’ life, we know that so much goes into your health that’s beyond just medicine. It’s how what’s your social interactions or, like if you are happy or not, if you are doing things that are meaningful to you and so forth. And to the extent if there is a tradeoff to be made on any particular day, you may in fact be better off focusing on those things that make your life better, which will in turn make your health better than just focusing on very narrow, sort of pathologically oriented efforts.

We have to keep this in mind, but the World Health Organization actually went further and in the late 80s they had something, a meeting that eventually got called I believe the Ottawa Charter. The Ottawa Charter was the document that came out of this large sort of a gathering to rethink the whole issue of health and they didn’t end up changing the definition of health. However, they did note its relative priority and they noted in particular that health is a resource for life, not the objective of living.

So, they were just emphasizing that what we care about and what we should care about is quality of life. It’s the living not whether you are in good health or not. Health is simply a means to an end, not the end itself; we have to very much keep this in mind. Back when we were trying to develop products and services to help people with their health and well being, keep in mind this is not their priority, and in a very real, but philosophical sense it shouldn’t be their priority. Life is for living not for managing your health.

So we are to develop solutions that make a significant difference to the individual for the health and wellbeing, we have to appreciate that these tasks of health, these chores of health are really just that their chores, they’re not the point and to the extend that they are going to help people they have to make life easier, better not more difficult and —

Mohammad Al-Ubaydli: Again this is how and the services of life sort of endeavors?

Rajiv: Exactly, that’s exactly it. No, you are about to say something.

Mohammad Al-Ubaydli: Well, I was going to ask kind of I was really
intrigued the first time I spoke to you about that the focus that you had on your product it was exactly that it wasn’t something too knaggy about yet another failure you have in here into the health guidelines, it was actually trying to serve you with some useful tools.

Rajiv: That’s right.

Mohammad Al-Ubaydli: So I was kind wondering what of problems do people solve using the Zume Life products?

Rajiv: Well, there is a couple of things to start off again with a kind of an earlier bit of conversation that, let’s focus on the persons self defined health tasks, so we get rid of this issue of concordance and so forth. It’s what they want to do. What the would like to be doing and so then the problem simply becomes how do you manage to do that during the course of your busy days, right you have other things that are far more important.

So, what kind of things can we provide to make your life easier. One of the things that is a huge mental burden is being able to remember all these things and lot of times we look at these health solution and say this is so trivial because in a sense well how hard can it be to take that pill or how hard can it be to weigh yourself once a day and that kind of thing. We look at this very minute little task not realizing that if you added up all the little tasks in the course of a day that has something to do with your health.

They’re enormous; especially, for people with multiple chronic diseases, which is getting to, unfortunately, be ever more the case. There is just a lot between your medications, between your biometrics, between symptoms, and things that you’re supposed to keep track of between tasks that you simply suppose to be — and stay aware of it so forth, even if there’s self defined.

In the US there is a very popular writer named Michael Pollan who has written a lot of books about foods and healthy eating and so forth. His most recent book is a set of something like a 100 rules you should follow for good eating. And each individual rule makes sense, but try to keep all of these in mind if it’s possible.
So, again, on a daily basis if you are trying to follow a set of things how do we make the simple doing of it easier and so this notion of being able to remind people at the right time that they need to do something is a very valuable aid. The other thing is being able to track what you have done and especially for its short-term benefits. We normally think of these tracking of health for its long-term benefits that you can analyze the data and so forth.

Think of the short-term, sort of the immediate benefits tracking something really comes from the fact that well 10 minutes later you can ask yourself how did I do that? And you can easily see that you have and so you can get on with your day.

Mohammad Al-Ubaydli: Can you give me an example of that was being tracked — short-term?

Rajiv: That’s an important question because the key is, it should be anything that you think you want to track, okay, and so whether it’s things like medications or you have decide that you want to drink five glasses of water a day or you want to remind yourself because perhaps you have carpal tunnel you need to step back from your computer once in a hour and take a five minute break, whatever it is that you think is important for your health you want to track.

There are users, especially, in our prototypes and stuff just as a rattle off, they track a variety of medications and medications rather a catch on term, it meant anything from prescription meds and over-the-counter things, but also included herbal remedies and whatever you happen to make yourself, those of us with an Indian background often had milk with turmeric for colds and coughs and things like that, that counts. There is also —

Mohammad Al-Ubaydli: You’re making me hungry now.

Rajiv: Yeah, there is also therapies in the sense that you are doing breathing exercise or you’re diabetic and so you want to remind yourself to massage your foot a couple of times a day, things like that. There is, of course, keeping track of — again, it varies by person, but some people want to keep track of their diet, keep a food journal and for certain it’s far more important to do it in meticulous way than others.
So if you have things like a crohn’s disease or colitis or things like that you want to actually keep very careful track of your food, not so much in a nutritional sense that well I had so many grams of salt and so forth, but actually what did you eat, you had ham here, you had broccoli there and so forth because that might help you to keep your health issues sort of under control.

People kept track of a variety of activities ranging from the obvious things like walking and swimming and whatever, but we had one user who wanted to — who is important for her to keep track of her physical activity sort of her exertions and one other things she listed was shoveling maneuver, turned out she lived at a farm and she explained that that’s really hard work.

People also kept track of different symptoms and stuff, we had, for example some people kept very careful track of episodes of pain for various reasons people kept track of their productivity their sense of well being, their occasions of asthma attack. It varied quite tremendously and this is actually a very important learning, which is rather obvious in retrospect but that each individuals needs are unique.
You can’t just bucketize them as people with diabetes or people with asthma or people with lower back pain, these sort of pathological buckets because each person circumstances are so different and as we were talking earlier, their context, their job, their family situation where they live and so forth has a such a huge impact on their health, that everybody’s health situation and health activities are truly unique and so what — any solutions supports them what needs to acknowledge and cope with this uniqueness.

One of the papers that I’m working on right now which is meant to provide some guidance for those designing health solutions makes an important point about this that we need to be designing frameworks for health, which then are ultimately customized by the users rather than making very tightly fixed products. They simply don’t fit with the reality of our lives and norms variations.

Mohammad Al-Ubaydli: That is very interesting thing, are you describing all these things I’m just, I’ve been writing a book, recently, called “Switch: How to Change Things When Change Is Hard,” which I highly recommend by the way. It’s by Chip Heath and Dan Heath.

So, they start with this one experiment in the beginning which is – they have these volunteers who come in and they come in to the room and a plate of warm delicious chocolate chip cookies and other plate of dry granolas and, of course, you can tell what everyone wants to eat; but the task they’re given is, half people are told you can eat as many hot chocolates as you want, but you can’t eat the granolas and the other half are told the reverse. They’re told we are watching to see what happens with the experiment.

Pretty much — so the volunteers, all of them, they are all adults and so they stick to that rule. Then the they come back after half an hour and say thank you very much for doing that, “Oh! By the way, can you also do this puzzle?” And they are set a task for this puzzle which actually is impossible to do, and the real experiment is they’re testing out how long until you give up.

So, what they find is that the people who had to resist chocolate chip cookies give up much earlier than those who had to resist granolas. So what they are saying is, basically, there is a finite amount of willpower you have in a day and as the demand of that willpower went up, you just get exhausted, and you just give up.

So, it’s not that you don’t know that you should be doing stuff it’s just you only are able to do so much and so the book is all about minimizing the burdens and things you can do to guide people, because they are in willpower fatigue and so I was intrigued by that.

Rajiv: Yes, that’s very much along sort of the right direction, but there is, there’s also a term that’s been used in some places, bio-cost, which is just reflective of this. But anything that you do has a certain amount of cost even if it’s not measurable. There’s financial cost, but also there is the cost in time, in mental energy, in physical energy and so forth, and we ignore that to our peril.

We do only have a finite supply of it, and in fact, there’s lot of studies kind of about the increasing busyness of life. There always seems to be one more thing that you’re supposed to keep on top of. In the US right now, there is a movement of the smart grids. The idea is that the solutions will be in your home and you will be able to get detailed information about the electricity usage of various appliances you got plugged into the house.

That with this information you can do a smarter job of balancing your power needs and so forth and the long term effect of reducing our energy consumption. All very nice in theory, but I wonder where exactly is this mental overhead going come from, that will allow us to manage one more thing.

Mohammad Al-Ubaydli: No one counts that right?

Rajiv: No one seems to count that, yeah. We seem to be constantly overburdening ourselves and there is this analogy of that the straw that broke the camel’s back and I think that doesn’t fit here. It’s rather more that we’re constantly adding one more grain of sand to the machinery and it’s just ever more sort of slowly grinding and just wearing away. And in a sense that’s what it feels like. That we’re just constantly throwing more things at people saying, oh you can do this one more thing, it’s so trivial. But the accumulation of it like those resisting the chocolate chip cookies, it takes a lot of energy.

Mohammad Al-Ubaydli: You said something, “I always think of them, Animal Farm; the character Boxer, the horse.”

Rajiv: Yeah.

Mohammad Al-Ubaydli: Who, whose catch phrase is “I will work harder” and he just keeps on heaping on more and more tasks and, of course, Boxer ends up in a glue factory. It’s not a sustainable way of working. I’d say I’m kind of — I was really interested when you described your product, because it was all about trying to do things smarter and avoiding the constant guilt tripping of there’s yet another task that you’ve missed.

Rajiv: I’m bringing it at a higher level of alleviating the user’s workload.

Mohammad Al-Ubaydli: Yes. When people, when users start using the product, what do you advise them?

Rajiv: Quite importantly, we don’t give them any particular advice in the sense of what they should be doing for their health, we really don’t know. How do we know your particular circumstance? We simply don’t.
So the advice that we give is more, is just at the very simple level of how do you use the tool. Along those lines, we just advise people to start off with whatever is on your list right now. Don’t worry about what else you should be doing. Just, whatever you’re trying to do, just start with that. Then see where it goes. There has been a lot of learning from in a sense others who have used to tool, that we then pass on to people, but it turns out in retrospect to be a lot of common sense.
As it turns out once people start using these sorts of solutions and find that, hey there, they’re actually able to be successful at their self defined health regimen. Then, well, simple things happen. They start being more confident about their ability to do things. They start seeing for themselves what things matter, what don’t.

So they start changing what they might be doing. They also start getting the confidence that they can take on tasks and accomplish them. Then they sometimes give themselves more to do, because it’s doable. Since we’ve lowered the cost of these things significantly, they’re able now to do more.

So in a sense, people may initially start off for example in terms of keeping track of symptoms, do the sort of pathologically oriented symptoms such as if you have asthma, keeping track of your wheezing or shortness of breath. Then over time people start often keeping track of more things, how they slept or how they felt and so forth, partly because they find it so much easier to add things to their to-do list and accomplish them, because they’re learning from themselves, their self observation what may or may not be meaningful. In a sense it encourages them to do what I think of as tiny self experiments and seeing if this makes a difference or not.

Mohammad Al-Ubaydli: So this is interesting, because one of the things you touched on, basically, is you watch your different users began using the product for. What have you learnt from watching them do that and the things they track for themselves?

Rajiv: Well, a couple of very important sort of high-level observations. One is this notion that health is dynamic. That it is just constantly changing, both your health and what you might do for your health.
Some of these changes are driven by the context. Your health deteriorates because your body is aging or there is more pollution of the air or your job changes and becomes more stressful, things like that. But your health is just constantly changing. Some of these are long term cycles, such as aging. Some of them come and go with the seasons or job changes and things like that.

So one important thing was just this notion that your particular health regimen or your particular health status at the moment is basically guaranteed to be different a few weeks from now, a few months from now. So this isn’t a static problem, but a dynamic problem, and so the products and services and solutions need to just be aware of that, sort of be built around that.

The other thing was also this notion life is focused on health, and so there were times when people’s health was say more influx, that they would use the solution in greater sort of detail than they would when their health was fine and they simply focused on other aspects of their life. And sometimes this was quite dramatic, in the sense we had one user whose health was actually getting worse, but she had less and less time to focus on herself because she had serious illnesses to deal with, with other family members.

She has only got 24 hours a day and she has only got so much mental energy and in a sense consciously just having to allow her health to deteriorate while she deals with other things. And you can’t argue with that. That’s a very reasonable approach, and a very different more positive kind of thing. So, there’s a person who was a user who had, he’s been dealing with chronic health issues for the last couple of decade, because he was an organ transplant recipient and then just sign up for a life time of managing your health with that.

He knew that there were going to bad times and there would be positive times and so he just kind of went with the flow. When his health was getting of out of whack, he would be keeping track of various things and he would make sure to do all of his health activities as close to his self defined regimen as possible, give high priority to it everyday.
Then, once things stabilized, he’d just have to go back to a more laissez-faire approach, so that he could concentrate on other aspects of his life. So, from someone who is providing a solution or say a healthcare practitioner is trying to help the person, you have to step back and say their life, the flow of their life is going to rule more than this particular task in front of them.

Mohammad Al-Ubaydli: So do people come to that realization eventually, I guess what do people worry about when they start using this software that you don’t think they should be worrying about?

Rajiv: We didn’t actually get a whole lot of that, that I can really give you an answer to it. We didn’t have a whole lot of people —

Mohammad Al-Ubaydli: I guess the stories you are telling me and the feedback you’re drawing, is that from people kind of posting in a social forum and then the community or is that from interviews you’ve done with other users?

Rajiv: We followed up with, as I said we did a lot of pilots and the purpose of the pilots was to learn, and so we did a lot of that. What we found, to your question, there’s perhaps a slightly different twist on it, but when we looked at what value did people find from using our solution, that was very interesting as well.

So one particular story out really had to do with a person who had been relatively, recently diagnosed with type-II diabetes when she first started using the solution. At the time, she was just coping with this, for her this life shattering discovery that she was going to have to manage her life differently than she had done before, she had to pay attention to her food, she’s got this whole counter full of medications and so forth.

So just the whole notion of living with this illness was, was just very confusing, very challenging, just very hard to accept. In that situation when she first started using our solution she told us that the most valuable thing was that whenever she kind of used the solution or just noticed it lying around, it gave her comfort from knowing that well, there were other people like her and that there were people like us who cared enough to be developing solutions for her.
So it just gave her this comfort of not being isolated. Whereas when we talked to her four or five months later, she had come to terms with her new situation, had come to terms with the fact that was she would be able to deal with it just as a few other millions of people around the world have done. So then the value of the solution sort of started becoming more of the pragmatic stuff that she could now rely on the solution to do things, the mundane things of reminding her to keep on top of things that the benefit now was sort of the mental unburdening on to the solution for things she had to stand up, but it varied.
Mohammad Al-Ubaydli: Now that’s interesting and so I’m intrigued also by the temporal aspect that things change at a time. So if I’m going to start using your product, I’m already 00:42:31 now. So what do you think I should worry about that traditionally people don’t worry about when they first begin or what should I know that people often don’t know when they start?

Rajiv: Well, I want to just throw in here a little caveat on sort of jumping in and encouraging people to use this solution because the Zume Life Solution has been developed very much at a prototype and so forth, it’s not ready for prime time. It’s very much directional of the kinds of things that need to be done, but it’s not exactly available for widespread use and at the moment in fact we are not taking on anymore users while we —

Mohammad Al-Ubaydli: I’m very disappointed Rajiv.

Rajiv: — while we take the learning of it, and improve this significantly. So it’s more the learning, the direction of what kinds of solutions should we be developing that is really important here. And well like recently I just read this wonderful report that came out of the UK from an organization called NESTA, called The Human Factor and talking about how we can transform healthcare by involving the public much more in it.

I like one of the things they say at the beginning, sort of arguing for why such an approach is necessary by saying simply that why doing the same things only more cheaply won’t solve the problem, that we have to have sort of dramatic leaps forward not just keep trying to make things more efficient. So this is all very positive and yet as you go deeper into this particular report, which, again, on the whole is really well written but the focus ends up being on this innovation of patient-centered care and this is where I think a lot of these innovation efforts are just falling so far short.

If we keep insisting on seeing patients, we’ll never get there. We have to have people-centered care and in fact people-driven care. We need to reframe healthcare from being something that these professional providers do for us to reframing healthcare to sort of self-management of well being. So the solutions we really need to be driving towards and whether that’s at Zume Life or at the NHS or at Kaiser or wherever is putting the individual at the center of their care, putting the individual as the person in charge and everybody else is simply an advisor.
Making sure then that we’re developing solutions that suit the person, they make their life easier everyday, they address whatever that person feels is their important health goals, that acknowledges that whether we like it or not they are going to focus on life not health, that health is multi-factorial. And so these solutions have to be designed with that in mind not these narrow asthma solution or diabetes solution, or lower back pain solution.

So these are the kinds of things that I would like to emphasize rather than, hey everybody go, try the Zume Life solution. It’s really the start, it’s a directional thing, it’s not the end-all product.

Mohammad Al-Ubaydli: I appreciate you highlighting the bigger picture. The NESTA reports, you were talking about them, and I was there on the day they presented it and on then on the PKB Wiki there’s a video of the event as well as the reports. So, I watched them; watching and reading. So the thing that disappointed me is the same thing that you were describing which is the, the focus was on how do we do what we currently do but more efficiently, right?

Rajiv: Yes.

Mohammad Al-Ubaydli: So, we don’t want to do the wrong thing right, you want to do the right thing and you have to switch away from, at the moment, talking to the existing members of the healthcare system all of whom are very well meaning. Yet, with always in the presume of doing what we currently do, which I think is the wrong thing, but doing it more efficiently and start saying, “Well, let’s do it the right way, which is people-centered as you’re describing in a dramatically just completely different way that traditional presume just wouldn’t allow you to even contemplate escaping.”

Rajiv: That’s right, that’s right. I think a very positive irony in this is that if we do that, if we focus on helping people take care of themselves in whatever way they want to, we will actually accelerate the kind of learning that the medical community wants to do more of. And as an example you know, you described that chocolate chip cookie Granola example. But the reality is that so much of our clinical trail, so much of our medical learning type of efforts by nature have to focus on very, very simple experiments because we simply can’t cope with things that are as diverse as humanity.

So we come up with these very difficult to do, but in the end simple experiments and try to extrapolate from that learning. And the challenge there is humanity is so varied that we learn so little unfortunately from these carefully controlled scientific experiments. The challenges that from a medical, from a science perspective, we cannot possibly afford to do huge complex multi-variant studies, how can you mange that, simples ones are hard enough.

If you actually develop the kinds of tools that sort of Zume Life is pointing towards and we allow people to take care of their health in whatever ways they want, then we will end up with in a sense this big data, this enormous collection of enormously varied data, which can then be mined to extract the kinds of information that we are looking for in our clinical trails but actually get presumably much more information than we are able to today.

Rajiv: I’m glad you brought this up because I remember, you remember the Robert Wood Johnson foundation about observations of daily living where they, they’re basically ask people to create tools that track things that people care about rather than the traditional randomized control trial chases about.

I just remember when I was reading the call for proposals that, like I was thinking did Robert Wood Johnson foundation talk to Zume Life or something because they are doing, they are asking for exactly what Zume Life is focused on, which is let the people declare what they find interesting and let’s give them tools to track down in a mass scale, so both sort of mass customization. I was, kind of, curious whether you definitely make it easier to collect that data than it has ever been possible to do so.

So you can actually begin to answer useful questions which traditional randomized control trial have not touched on because of the scaling problem you are describing. But I’m kind of wondering whether you’ve had people come back to you from Johnson foundation or people from the ODL movement kind of saying, what Zume Life learned or what Zume Life doing around?

Rajiv: No, it’s sort of an interesting thing there, which sort of goes to the heart of the problem we are talking about, about people not being able to really go far a feel from what has always been done. So the Project Health Design that you speak off, I think just in the last few days announced publically, you know, the selected five projects for the next round, you know, you spoke about when they’d put out the call for proposals last year, well you look at these projects and they are again so tightly pathologically focused.

So one is ODLs be a mobile platforms for use with obesity and depression. Another one is focused on to collecting ODLs from children whit Crohn’s disease and so forth. They are very pathological focused also another sort of aspect of the whole Project Health Design was that no proposals were accepted unless the clinicians were involved. In fact the project had to be led by a clinician.

Mohammad Al-Ubaydli: Exactly.

Rajiv: My whole point here is that I am sorry but that is a very small subset of health. Again if you go back to the World Health Organization’s definition of, underlying definition of health and the expansion of the concept with the Ottawa Charter, this notion of clinicians driving, this is really the wrong place. Right I think Project Health Design you know they’ve done a lot of good work, there has been a lot of interesting learning’s from it, but it’s more along the lines, we are doing what we do slightly more efficiently.

Mohammad Al-Ubaydli: Yes and they kind of picked the obvious traditional things and it slightly turned away but they are getting back.
Rajiv: Yes, in fact it was quite ironic is that we looked into it, we found from Zume Life perspective that well we were basically ineligible to apply one because —

Mohammad Al-Ubaydli: It’s getting, I thought —

Rajiv: Yes, well the problem was, one we were driven by what the user wants and whether a clinician is involved or not, secondly what they wanted to do is to spend the first year, I mean in 2010 developing the concepts for what a solution should be and then in 2011 perhaps building some prototypes. Well we did this a few years ago and so we are —

Mohammad Al-Ubaydli: And that’s kind of the bad thing.

Rajiv: That’s just the bad thing exactly. So again I don’t mean to criticize their efforts, they have been a lot of really good things within the constraints that in a sense these sorts of foundation proposals are stuck with and from the academic point of view. But the important thing here is that these sorts of projects and most of the projects are driven to in a sense learn, they are — it’s a scientific effort to learn defined norms that can then be turned to treatment plans that doctors can advise and so forth.

Our goal its sort of, in the sense of Zume Life but also my personal passion and focus here is how we do help individuals take control of their health and do whatever is best for them, whether or not it is useful for the world. In the sense if for you Mohammed, if eating broccoli is the only thing you need to do to sort of fix your health great, we’ll let you help you learn that whether or not it makes any sense for the rest of us. It’s like how do we help the individual with his health.

Mohammad Al-Ubaydli: And I approach at the same time it’s being very helpful that broccoli is not the only thing that’s trying to give me health.

Rajiv: Yes, one would hope but —

Mohammad Al-Ubaydli: But that’s what I will expect, a cool faith that –
Rajiv: That’s true; Mr. President, George Bush, didn’t like this stuff so –
Mohammad Al-Ubaydli: What else do you wish I ask you for, because, that you’ll find very interesting?

Rajiv: Well I think the, the thing that I’d be curious about, is reason is what’s going in Europe that along these lines that quite honestly that I could participate in, that I could help with, I have to imagine that these ideas are certainly not limited to the U.S. and what I’ve seen from a far is that even within talk about the healthcare assistance the ones in Europe are far more holistic than what is in U.S. so that’s sort of my question to you.

Mohammad Al-Ubaydli: I was really looking forward to this phone call today, because we just started a project with NHS Choices, today, and NHS Choices is the National Health Service equivalent to WebMd in the USA. One of the things we are doing with them is integrating all that content, so we can merge around this information.

The project we’re doing at moment is a pilot with a social game provider on the iPhone where they create social games for people doing exercising (ph) activity and what we were doing is integrating with their iPhone apps. So whatever the person is exercising with that becomes a feed that goes in to their clinical team or whoever they want to share with secure clinical information online.

So, what I am kind of now thinking about is, what are the other observations that they 00:56:07 like applications that are available that I can then feed back to the UK clinical system; because you are getting different members of the healthcare system who are saying, “Well, the overall budget, I am responsible for healthcare. So, it’s no longer about shuffling back and forth between different specialists or this year’s budget and next year’s, I am responsible for the healthcare budget, anything I can do this year will pay dividends next year.”
So, they’re thinking fairly progressively about, well, what are the different things we can track and I wanted to start giving them different beta feeds, but without falling in to the trap of everything the patient does or the person does must be registered and given permission by doctor or nurse.

Rajiv: Right, right.

Mohammad Al-Ubaydli: So, I’m interested in different things we can do, things like and all the different things you collect that are personal specific.

Rajiv: Yeah that would be, that would be great to work together on. And it is important that even while there needs to be an essence of filter between, here is what the user is doing, but here is all that the healthcare professional cares about, that’s fine, we’ve got sort of a comedy in that, but let’s not stop to prevent the individual from doing what he needs to do. So sort of accommodate both sides.

Mohammad Al-Ubaydli: Yes and then just for us, we do the medical record in the social network, so it begins with inviting your clinical team but actually you then invite the people who really contribute to health, your relatives, your friends other people would send you these and they will get to look at the data with you because they are the ones who are going to make the real difference to you, okay.

Rajiv: That’s right, that’s right. Yes, in fact this notion of others like me is really important and this is a place where sort of mining of big data will prove to be invaluable because it’s really at the movement finding others like you is not trivial. It’s not just a bucket of diabetes etc. It’s how do you find people sort of your ethnic descent living kind of in your type of environment doing your kind of profession with your kind of health issue or probably much more you know have similar kind of health constraint than someone else with the same label.
Mohammad Al-Ubaydli: This is just checking out because this is concentrated to try and explain to you, people in the healthcare profession but one of the most interesting things to me about web before facilitating a research is the evolution of a tag. So and these things are very trivial basically the idea of having multiple overlapping tags rather than hierarchical system classification means that actually finding people like me under different facets is much more interesting and possible whereas if you start with a hierarchy you’ll always be constrained by, I can find people under that classification just in — who are like me. But, if, originally we found out that classification system hadn’t sort of this particular way of looking the data, I can’t look at the data in that way.

Rajiv: That’s right.

Mohammad Al-Ubaydli: The web kind of lay outs tagging myself up from this ethnic background to tag myself to others, I like curry or I like Viking. And then allowing all kinds of new ways of finding people like me that who had never been envisioned or design.

Rajiv: — by yourself perhaps, you know because how many tags can we ever create, but this is an important idea in two perspectives, one is the one that we’ve just been talking about, how do you find other people like you by kind of doing this automated data analyses to find the affinities if you will, that really look like you. But there is a very different use of the same technology in a sense within the person, which is — so suppose someone has been using a Zume Life like system for a long time, whether it’s months or years, what have you. There are things that might occur to you or your caregivers that you might be looking at. Like did this medication work for you or not, that kind of thing.
So you could look the data and sort of proactively look for a correlation that you may or may not find. But just if you have this kind of data, we can use a lot of these deep data mining tools to find or spot patterns that we may not be able to think of ourselves.

So the system, I’ll give a trivial example, but the system may be able to note that, hey, you know whenever we have gone mountain biking in Yosemite National Park, five days later you’ve always had kind of a serious asthma attack. This is putting together three different pieces of information.

Maybe it’s the fact that you’ve gone mountain biking, which you’ve noted in your exercise activity. Maybe in some journals, you’ve noted that you’d gone to Yosemite and in some place else you’ve noted that you had asthma attacks and, but this is the pattern you may have never had spotted yourself. Now I just think of that example.

Mohammad Al-Ubaydli: So not only does data collection and data storage, obey Moore’s law of sort of exponential increases in capacity, but analytics also obey Moore’s law, that you can start answering questions would have been completely unimaginable 5 years ago because of the new onset of technology that you have as an individual available.

Rajiv: Yeah. I mean not all of the stuff is available to us yet. But I mean especially with your background you know that this is available. This isn’t science fiction stuff. We know it’s there. That could be applied to this. I mean ironically health as a field has relatively speaking a dearth of data.

Mohammad Al-Ubaydli: As in digitizable or digitized analytical data or just dearth of data?

Rajiv: Just dearth the data in general. I mean never mind whether it’s digitized or not. But think of the person, a normal person’s health record, even if every single piece of information that exists today on paper was in one place, it’s still such a tiny view of your health. Contrast it with even your modern car is collecting an enormous amounts of data about itself everyday. Never mind the latest Airbus or Boeing Airplane.

Mohammad Al-Ubaydli: [Audio Disturbance 01:02:42] So your medical record is really a series of transactions that you have had with the healthcare system.

Rajiv: That’s right.

Mohammad Al-Ubaydli: [Audio Disturbance 01:02:53] I’ll cut your call and just call you on another cell phone.

Rajiv: So there is enormous potential for both the creation of big data and then really valuable use of it.

Mohammad Al-Ubaydli: [Audio Disturbance - 01:03:09 - 01:03:47] And then coming back to your point, your focus on that normal person. So one of the things — especially, there will be the clinicians and patients or people that do cover this kind of this information and so if you look at 01:03:30 that a patient has 6,000 of megabytes of space available free of charge and a much better user interface than the securing of a check (ph) has for its clinicians which is 100 megabytes, that’s quite an expensive clinician. And I was doing calculations the other day that Facebook, for example, the amount of photographs it transfers everyday is the equivalent of 60 million x-rays every day, i.e., the entire population of the UK transferring x-rays everyday. This is being done free of charge everyday. Whereas a digital image system for clinicians is exceptionally expensive.

So it’s the patients who are encountering dramatically new technologies, order of the magnitude better than anything the clinicians have and I think it’s them who will find new ways of research before the clinicians even realize it’s even available, and they’ll bring the clinicians along with them rather than we’ll wait for a clinician to introduce it and ask them to track ODLs or whatever?

Rajiv: Yeah I mean it very much could work out that way. And of course at the same time I hope that the folks in the healthcare system do move more quickly, because they will certainly stand to benefit from these things as well. So they have very much some value in this happening anyway, and so I hope they do. And in that paper I had sent you a couple of months ago of A Billion Little Experiments I did a very quick back of the envelope calculation just on capturing data for a percentage of Americans with diabetes and it easily gets into the petabyte range.

Mohammad Al-Ubaydli: Remind me what are the data points collected for that, the petabyte?

Rajiv: Oh! It was — I just sort of — it’s like here’s a rather generic daily health regimen of a person with diabetes, of an adult with diabetes. They might be taking this many meds a day, they might be keeping track of their carbs, they might be keeping track of disease symptoms and so forth. If they were doing that everyday, through a system like Zume Life, how many people would you need to sort of be collecting a petabyte worth of data a year; it’s not that many.

You contrast it with the level of health data that we generate today through clinical trials and doctor visits and so forth, and it’s night and day.

Mohammad Al-Ubaydli: On that note, Rajiv, it’s been really interesting talking to you. Thank you very much for your help. We’ll put all these notes on the wiki in the blog and including the paper that you mentioned. Thank you very much for joining me today.

Rajiv: Oh! You are very welcome, Mohamed; it’s been a pleasure to talk to you as usual.

Kibbe maintains his relationship on a part time basis with the AAFP as Senior Advisor, is an active blogger on health IT policy, and provides strategic, policy, and IT consulting to a wide variety of firms and institutions. He is a frequent speaker on health IT trends and innovations, especially on the topics of patient engagement and physician-patient information sharing.

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Dr. Mohammad Al-Ubaydli: Welcome to the Patients Know Best Podcast. My name is Mohammad, and I have Dr. David Kibbe on the line with me.

David, it’s a pleasure to speak to you again.

Dr. David Kibbe: Pleasure to speak to you Mohammad.

Dr. Mohammad Al-Ubaydli: David, I was reminded of all the work you did today, because I was watching the discussions about the CCR and the CDA data formats. Give us a little background about your work and then we will dive straight into the data format and what it means for healthcare.

Dr. David Kibbe: Sure. Well, I am very much an accidental expert on health IT standards. I am a family physician by training, and had started a couple of health IT companies in 1990s and in the 2000s. And then worked for four years for the American Academy of Family Physicians in the United States, which is the group that represents about 95,000 physicians and residents in this country, about 65,000 active family physicians in practice. And headed up a division of the American Academy of Family Physicians called the Center for Health IT.

Part of the work we did there was to get involved with the Continuity of Care Record standard early on, as an effort to promote interoperability among electronic health record applications that were gradually gaining some popularity among our membership.

So I was one of the folks that helped to conceptualize the Continuity of Care Record standard, work on the XML, and help the industry understand why this was an important effort.

Dr. Mohammad Al-Ubaydli: And just to add to that, I know from talking to lots of people how important the work that you have done is on the CCR, and how much teaching and evangelizing you have been doing.

So let’s do the basics here. What is the Continuity of Care Record standard?

Dr. David Kibbe: Well, the Continuity of Care Record standard is a XML schema that is primarily involved in content transfer.

In other words, when we started this work in 2003, although there were a number of standards out there for the transport electronically of different kinds of information, laboratory data, for example, or payment information; there really was no standard that encapsulated the relevant information about a person. Things like the demographics problem list, medications, pharmacy medication list, allergies, immunizations, and so forth. There was no real, sort of, patient centered data summary standard.

So the first thing that we did was try to decide upon the data content itself. And the group that worked on this were physicians and nurses, and some patients themselves. The idea being, if you were to show up in an emergency room or at a doctor’s office, but you didn’t know, and they didn’t know you, what information would be really important to transfer at that particular time?

And believe it or not, this was before the whole idea of personal health records; that term didn’t even exist. So this was a fairly novel idea.

And then the second thing was to use Extensible Markup Language, XML, which is really the lingua franca of the Internet, which has been used in a lot of different industries; banking and financial services, but not in healthcare. And to use that as the vehicle for the human and machine readability of this transport standard.

Dr. Mohammad Al-Ubaydli: I remember when you started explaining to me it was that the Continuity of Care Record was supposed to be the digital equivalent of the referral letter. That it really married the existing clinical workflow of sharing information, that’s being brought to the digital realm.

Am I right about that use case? I know there’s a lot more that people can do with a CCR than just referrals.

Dr. David Kibbe: Well, I think that’s partly right. The difference between the CCR standard and a referral letter, say a Word document or a PDF document, is that the CCR is almost all structured data. And structured data is, generally speaking, computable data. In other words, it can be transferred from one person to another person, but it can also be transferred from one computer to another computer.

(00:05:14)

So the CCR is really not a document in the sense that a discharged summary or a referral letter is a document. It’s a set of data, and its purpose was, from the very beginning, to allow both machine readability and human readability of the content of the file that was created, the XML file that would be created according to the XML schema of the CCR.

Dr. Mohammad Al-Ubaydli: You mentioned the schema. The other thing that stuck me about the CCR is that structured data is actually almost — it’s actually readable by human beings. So although it’s designed to really work well with a computer, unlike other data standards in healthcare, it’s quite readable.

Could you tell me, sort of, if I were to look in a document how to — what’s the structure, how do I interpret it myself?

Dr. David Kibbe: Well, this is an interesting point of the standard itself, it’s a little bit arcane, but Adam Bosworth, who was formerly with Google and Microsoft, and now with Keas, was commenting on this the other day, is that, one of the things about Extensible Markup Language is that the code itself, while not formatted in paragraphs and so forth, is pretty human readable.

It looks a lot like what you would get if you were to look at the source code of an HTML page that you are viewing on the web, and you would see chunks of description, and a place for text and so forth.

But at the same time that instruction set, the Extensible Markup Language, allows computers to know that, oh, this is a diagnosis, and this is the code associated with the diagnosis, and this is the coding system associated with that diagnosis, and then to do computation upon that information as well.

So XML is a — there is a good reason that XML is the lingua franca of the Internet. It’s kind of the basis for the banking documents, exchange of information.

I think we were in a place where the timing was right to introduce this same technology into healthcare, not without some struggle and conflict.

Dr. Mohammad Al-Ubaydli: Okay. So you mentioned the struggle and the conflict. One of the other standards that’s available is the CCD or the CDA, and the nice thing about standards is that there are so many to choose from. So why is the CCR, or how is it different, and how is it better than the other alternatives?

Dr. David Kibbe: Well, I guess the first thing to say is that, there wouldn’t be any alternatives unless there hadn’t been the CCR in 2003, because this was really a new standard. The idea that health information should be patient or consumer centered and available to people, and then transferable at the will or authorization of the individual person, that was a completely new idea.

The folks over at HL7, which is another standards development organization; its much larger than ASTM, which is the organization that manages and develops the CCR standard, sort of immediately decided that this was also a good idea. They wanted to essentially take over the Continuity of Care Record standard from the group that had started it.

To make a long story short, what happened was the folks at HL7 developed a separate standard, which is officially known as the CDA/CCD. That stands for Clinical Document Architecture and Continuity of Care Document, which utilizes the CCR’s structure, if you will, in XML, or at least part of it.

But it’s really a very different standard. It has its uses in primarily large enterprises in America, those that are aligned with or have been using HL7′s complete set of standards for a long period of time.

(00:10:08)

The big difference between the CCR and the CDA/CCD is the level of complexity. CCR is actually a fairly straightforward, simple standard. It’s written in broad industry standard, computer industry standard, XML. It’s not really referential to any other standards. And in that sense it differs from the CDA/CCD, which is referential to the quite complicated set of standards around HL7, including not only the CDA, but the RIM, which is their data model, in basis of everything HL7.

So there has been, sort of, a competition between these two groups of people; somewhat symbolic in nature, over the past three or four years, but the reality is, is these are very different standards and they have different purposes and uses.

I think they are probably both valid and necessary in today’s environment of data exchange in healthcare, where this is a pretty new phenomenon. Moving data between institutions in healthcare is, at least in the United States, is a new thing. And the CCR is very good at that.

The CDA/CCD, I think, is probably much better at moving documents, many different kinds of documents inside institutions, inside enterprises.

Dr. Mohammad Al-Ubaydli: That’s interesting. So again, just to recap, Google is using the CCR, as is Microsoft, for their PHR platforms, but Microsoft also accepts CDA/CCD documents, is that correct, for HealthVault?

Dr. David Kibbe: Well, yes. There is an interesting differentiation between Google Health and Microsoft HealthVault, both of which are platforms for personal health record information about a person.

I think Google took; and this is very characteristic of Google, the sort of sparse information model, and they said, we are not interested in everything about a person, lots of documents and radiographs and images and so forth, what we are really interested in is a small subset of information about a person that can be computable, and which may then be useful in a web services world.

So Adam Bosworth, who was the Vice President of Google at the time, in-charge of Google Health, chose the CCR because it met those needs.

Microsoft HealthVault on the other hand, I think, has taken a — although they do use the CCR and support the CCR standard, they have taken a broader, sort of, mission, which is, we will accept any kind of information about a person, whether it’s a scanned document or a structured dataset in CCR format, or a PDF document, and we will worry about organizing that information later.

Dr. Mohammad Al-Ubaydli: I know that you teach a lot of institutions as they begin adopting the CCR. What do you advice someone who is beginning to use the CCR and applying it to the data they have about patients?

Dr. David Kibbe: Well, the interesting thing is, is that, there are developers in companies coming from outside healthcare into the healthcare world in America all the time now. It’s very interesting to me that in Britain there

has been a lot of at least press about the National Health Services using Google Health or Microsoft HealthVault as the sort of inexpensive, secure way of creating personal health records for people.

Over here what we have is a little different. We have Google and Microsoft among a number of companies that have sort of entered the healthcare world from the Internet and from the World Wide Web. And their developers are not very conversant with healthcare as an industry.

(00:15:10)

So when they think about moving information from one place to another, when they think about web services that will take information and provide advice or look for drug-drug interactions, or provide information to a patient about new medications that might be of interest to them, all sorts of things, they come from a world that was XML, and Extensible Markup Language technology writ large is pretty familiar to them. What’s not familiar to them are the conventions of, sort of, inside baseball and healthcare.

So there has been a lot of adoption of the CCR standard, partly because it’s just so simple, and people have said over and over again to me, we don’t understand healthcare very well, we are not sure what this information means, but we understand how to encode it using the CCR standards. Whereas I think the learning curve for the CDA/CCD is very, very steep for non-healthcare informaticians, and probably even for them it’s a pretty significant learning curve.

Dr. Mohammad Al-Ubaydli: Just as you mentioned Google and Microsoft, I have been speaking to people from the Conservative party, who are the ones who are quoted saying that they would use Google or Microsoft in the National Health Service. And none of them can find the person who said that. They kind of said that they would have personal health record and there will be a private market at that patient’s choice.

But then someone from the press said, oh, you mean Microsoft and Google, and then everyone began quoting the press person, and they can’t seem to control that story anymore.

But the irony is that both Google and Microsoft are not actually available in the UK, and I think not in the European Union at large, as a PHR platform. If you come from a European IP address, you are not able to access those websites.

Dr. David Kibbe: Well, it’s just fascinating the way these things go back and forth between our cousin cultures.

Here in the United States we are contemplating something called the National Health Information Network, which has been conceived of as a network of networks based on Regional Health Information Organizations, or so called RHIOs, which are generally speaking very expensive database management systems that are controlled generally by coalitions of hospitals in different parts of the country.

The idea being that if you can create a large scale RHIO in Cincinnati, that gets five or six different hospitals and doctors’ groups to contribute data to a single database, creates a private network that allows physicians and nurses who are authorized to access that information. Eventually they will sort of connect one another.

But what’s now competing with that is this idea of health Internet, and it’s actually happening. That is, more and more healthcare organizations are establishing personal health record accounts. For example, CVS MinuteClinic and CVS Pharmacy, for example. And allowing the patients to access that information, and then move it over the Internet, using fairly standard conventions for privacy and security to Google Health or to Microsoft or Dossia or to whomever they want to move it. And then move it from there to their doctors, or from there to some other relative or service.

So we are starting to see in this country — and the interesting thing is that people are sometimes using the supposed experience of the National Health Service in having spent billions of dollars on a personal health record system that didn’t work or doesn’t work, at least this is the mythology. This is the conventionalism.

And now turning it to Google and Microsoft, we are sort of anticipating not making this mistake that the Brits made.

(00:19:59)

And I think that’s really hilarious, but probably good. When it washes out, we may end up with not having to reinvent AOL and Prodigy and all those private networks.

Dr. Mohammad Al-Ubaydli: I will mention though that in that list of Google, Microsoft pages include Patients Know Best. My prediction is that –

Dr. David Kibbe: Yes, indeed. Let’s include that.

Dr. Mohammad Al-Ubaydli: Let’s make sure we are on there. This podcast is brought you by — so if you –

Dr. David Kibbe: Well, indeed. Okay, let’s go back there, because the difference is that your data are controlled by provider organizations and the RHIOs that are there sort of regional systems, you really don’t have control as an individual or a person or citizen or patient or where that information. But if I have control over this, I can send it to Patients Know Best. I can decide that that’s where I want my information to be stored and that’s where I want my information to be available for download in the same way that I control where my banking information goes.

Dr. Mohammad Al-Ubaydli: Exactly! In terms of my perspective, what we are asking is for healthcare provider to just give the patient a copy of that data and store it on PKB. But we think that at a certain point, enough clinicians would have given copies of their data to the same patient that the person with the most complete medical record about the patient is not the patient. So the clinicians as a matter of safety will now have to let the patients’ controlled record rather than relying on their internal system that this is an easier way of achieving a safe medicine than trying to build a big national infrastructure from the top-down.

Dr. David Kibbe: Well, we are exactly at this point in the United States as we speak. As a matter of fact, by the end of December, we will have regulations, meaning laws that prescribe particular standards and particular protocols for EHR technologies to use that will either encourage the role of the consumer as the keeper of his/her health information and the person that’s able to access this or discourage it. So we are all, kind of, on edge over here with respect to how this is going to work out.

Dr. Mohammad Al-Ubaydli: I think it’s going to work out. I think the time is right; all we need to do is get it done right. So let’s get back to the CCR. When you begin teaching people to use the CCR and the institutions, what did you learn from watching them?

Dr. David Kibbe: That’s a good question. What we have learned is that many organizations in United States don’t know where their data are located. If you think about it, the Continuity of Care Record standard helps organizations create a single file about a particular person that says my doctors are these people and the conditions that I have are these and the medications I take and how I take those medications are these and so on.

What we have found is that in the case of both large and small organizations, they often don’t know where those data are and they often find that those data are very difficult to locate by provider or department. There is enormous inter-operator variability in where physicians store or groups of physicians store information such as smoking history or a colon cancer screening test.

This makes it very difficult for the established vendors with any reliability to go back to their customers and say, we can get these data out for you and put it into a standardized format that can then be sent to Medicare or Blue Cross Blue Shield or whoever it is who is going to do pay for performance.

(00:25:05)

So I think one of the sort of surprising things, we did a course on the Continuity of Care Records standard, one of the most prestigious organizations in United States, and the problem that they identified was that their allergy information was about 90% in unstructured format in dictated documents.

So, for them to access that allergy information on any particular patient meant that some human being had to go and read a document and then type that information into a database that would then be accessible to technology like XML for export to some place else.

I think that’s a real problem we have over here, is that we’ve had a culture of Health IT in which doctors can put the data wherever they sort of like. As a matter of fact, some of the major vendors over here have become popular and have sold a lot of their technology in part because they really haven’t enforced any requirements about where particular informational content is collected and therefore made available for structured abstract.

Dr. Mohammad Al-Ubaydli: That’s interesting.

Dr. David Kibbe: It’s getting a little bit into the weeds, but it’s a very big problem.

Dr. Mohammad Al-Ubaydli: What I was going to say, what did the institution do? Did they ask the patients and do they structure the information for them or did they just throw their hands up? What’s going after that?

Dr. David Kibbe: Well, in this particular case, they decided to associate with Microsoft HealthVault rather than Google, because Microsoft HealthVault was really disabled. That’s okay. Just send us your PDF, we will take it, whereas Google says, well, if you want us to accept a list of allergies, it has to come in a structured way, because we don’t have any people who are reading those documents and that aren’t going to retype this data.

This is a very fundamental split, if you will, or division within the Health Information Technology culture of the United States. What’s happening is under meaningful use and David Blumenthal’s regime at the Office of the National Coordinator is that they are sort of regrouping and they are saying, there are certain data elements about every patient that a doctor sees and particularly about a patient with high blood pressure or diabetes, for example, that ought to be structured. This is a new thing, but I think it’s a good thing.

Dr. Mohammad Al-Ubaydli: Interesting. When people begin to use their CCR, what do they worry about that they shouldn’t worry about?

Dr. David Kibbe: Well, the biggest issue over here I think, perhaps it’s global issue, it’s privacy and security. It’s sort of interesting to me to observe that some of the people who put privacy and security as a barrier to innovation, as a reason not to innovate are among those whose security and privacy has been mostly suspected.

Hospital systems in this country, for example, have been awful in terms of their loss of data, people being able to access information in hospital systems, and yet these are the folks that worry the most about Google and Microsoft keeping people’s privacy. So we have a sort of tension in this country where we are worried about privacy and security, but we are not necessarily always talking about the same thing.

(00:29:57)

Dr. Mohammad Al-Ubaydli: Okay, and tell us the flip side, which is what people don’t worry about, but they actually ought to be worrying about.

Dr. David Kibbe: Well, they ought to worry about whether the data about them is accurate. I think one of the reasons why there has been so much hesitancy and resistance to data liquidity meaning the ability of you or me as a person to get our data from Partner’ Health Plan or from Beth Israel Deaconess Hospital system is that those institutions are not sure that they really want those data elements to be provided to the patient, because information is power.

If I have information about myself and what was done to me or recommended to me by an institution or by a provider organization, then I have access to other opinions and perhaps evidence-based guidelines that might indicate that, hey, that wasn’t the right thing to do or there were alternatives that I was not apprised of.

So I think people need to worry a lot more about whether their information in hospitals and doctor’s offices is accurate and up-to-date and comprehensive. That’s I think a coming worry.

As Americans have to pay more for their healthcare, they are getting better at this. They are starting to understand that this information is really, really important in determining the decisions that are made about their health and they are beginning to have less trust, not so much about privacy and security, but whether or not what was done to them and the information that was gathered about them is accurate.

Dr. Mohammad Al-Ubaydli: Interesting! I always say that security is about two things; it’s both about preventing inappropriate access, but it’s also about ensuring appropriate access and that beyond a certain amount of complexity of your health, you need to know everything about your care, and you need everyone on your team to also know about your care and if the information is incomplete, then that’s dangerous medicine.

It’s no longer something you can ignore, but I find that actually most people if you ask them, would you like to have a look at your records, they say, no, why would I want to?

If you ask, do you think you have to look after your health, you think you have to look at your bank records, look at your credit information, they understand all those things, but they haven’t met the need yet to actually look in my health record information is really important. And I am wondering how much of a change there is around that.

Dr. David Kibbe: Well, I think, it’s happening. I think it’s happening slowly but surely for the individual person to look at his or her medical records. When the medical records are kept in an incomprehensible mishmash of Latin, French, Greek, and Arabic, that encodes, not to mention, code systems that are numerical.

That’s one thing and I think people are smart, and they know that a lot of health information is sort of encoded in this mysterious language that doctors use.

I think when people can look at their health information in terms that they understand and are helped to make decisions that involve translating that information into common layperson’s English or whatever the language is that they use, then that’s a different story.

So part of this is a translational issue and as primary care physician — you share with me this, but this is part of our DNA. I mean we’ve been translating to this, the results of a complicated test, but people are smart. They are learning, I mean think about it. The pregnancy tests that women can now purchase for themselves in the pharmacies are sort of green or red.

(00:35:09)

I mean it’s either positive or negative. I think we are beginning to move all health information into the sort of red, yellow, green kind of schema, which makes it easier for people to understand when they have a risk, that’s not eminent but needs to be dealt with, when something is really kind of impending and when, in fact, they don’t change their behavior or they do something quickly, they are going to get into big trouble.

There are companies in the United States, and I am sure in the United Kingdom as well, who are in the business of translating this information into something that people can understand and act on.

That’s part of this whole story because you can’t do that very well if you can’t get access to the information. Computers are very good at taking very complicated information and translating it into terms that non-experts can understand. But they can’t do that unless they can get at the information the first time.

In this country, we have something like 37 states that prohibit the individual from getting his or her laboratory results from the laboratory company.

Dr. Mohammad Al-Ubaydli: I mean we supported Health Data Rights campaign to amend legislation around that and I think — I mean does it look like that’s going to pass that the federal legislation will allow the patients to get the test results directly?

Dr. David Kibbe: Well, this came up at the Health Information Technology Standards Implementation workgroup meeting two weeks ago, and it’s at least being brought up as a major issue.

Why isn’t that I as a patient can’t get my laboratory results directly, but it has to go to the doctor first? Now they maybe granted. There are situations in which this sort of paternalism is in my best interest, but I would argue that 80% of the time getting the information directly to the person in a timely manner is the right thing to do.

Again, that’s something that’s being debated hotly in the United States right now. The good news about the CCR and the CDA, CCD, and the sort of argument about information standards is really not about the technology. It’s about the information and who gets to see it and who gets to control it.

I would say one of the very positive things about David Blumenthal and his leadership at ONC, and about the Obama administration in general over the last year is that we have seen the dialogue, the conversation about these issues mature rapidly, so that we are now talking about much more important things than we were a year before.

Dr. Mohammad Al-Ubaydli: Okay. This has been really interesting. Is there anything else that I should have asked you about? I hate to miss out more of your opinions?

Dr. David Kibbe: Well, no. I mean I am glad to talk anything with you, Mohammad, about anything of interest. I can’t think of — we are hitting some of the hot spots here.

I mean I think that one of the things that people don’t recognize in this country quite yet is that we are entering in a phase of regulatory control by the federal government of Health Information Technology.

It’s certainly not at the level of the FDA, control in medical devices, pharmaceuticals at this point. But over the next year, there will be federal laws that specify the criteria for certification.

This has now been introduced in a way that is kind of irrevocable at least for the next period of time. It’s as though that sort of the telecom industry environment is now permeating Health IT and I think that’s going to make major changes occur; some of them unpredictable, some of them good, some of them probably not so good.

Dr. Mohammad Al-Ubaydli: Well, I am calling you and recording this call using the Skype. So if we can get the same kind of disruptive innovation in healthcare as we got in telecoms industry then, Amen! Look forward to it.

Dr. David Kibbe: Yes, I will look forward to it.

Dr. Mohammad Al-Ubaydli: David, thank you so much for your time. It’s been real pleasure talking to you.

Dr. David Kibbe: Yeah, pleasure talking with you, Mohammad.

Total Duration: 40 Minutes

Full transcription provided by Tech-Synergy

Ms. Swan’s career has focused on research, finance and entrepreneurship, including founding a technology startup company, GroupPurchase, which aggregated small business buying groups. She was Director of Research at Telecoms Consultancy RHK/Ovum and previously held management and finance positions at iPass in Silicon Valley, J.P. Morgan in New York, Fidelity in Boston and Arthur Andersen in Los Angeles.

Ms. Swan serves as an advisor to research foundations, government agencies, corporations and startups and is active in the community promoting science and technology, and opportunities for women. She designs professional and educational simulations, including “Discontinuity Futures,” “Being an Entrepreneur” and “The Trader’s Pit.” Ms. Swan is the former Treasurer of San Francisco-based non-profit Equal Rights Advocates, an Advisory Board member of the Foundational Questions Institute, Lifeboat Foundation and Accelerating Studies Foundation, a presenter at the Expanding Your Horizons math and science conference and co-moderator of the Philadelphia and Boulder Future Salons, free monthly events discussing science and technology innovations and their implications. Ms. Swan speaks French, Spanish and Portuguese.

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Dr. Mohammad Al-Ubaydli: Welcome to the Patients Know Best podcast. My name is Mohammad and I am delighted to have Melanie Swan on the phone with me today. How are doing Melanie?

Melanie Swan: I am excellent, thank you.

Al-Ubaydli: So, Melanie, I saw you a couple of weeks ago, when you came to speak to the conference in Cambridge, and I was really interested in the genomics research that you were presenting. Give me a little background about your background and your interest in the area.

Melanie Swan: Sure. My name is Melanie Swan. I am an independent researcher based in Palo Alto, California, in the US. I research emerging high-impact life sciences technologies, and have been looking at personalized genomics as a key technology that’s going to be impacting researchers, public health, and individuals. I have specifically focused on emerging patient-driven health care models, as well as personal genomics and how one can actually make use of this information from an individual standpoint. I have been presenting some research, as you mentioned, at a conference at Cambridge and a couple of other conferences here in US at Cold Spring Harbor at the Personal Genomes meeting last week, and there is another meeting, NCHPEG, coming up in Washington DC next week.

Al-Ubaydli: I have to admit that every time I talk to you, there is ton of interesting things to tell me, but I am going to focus today just on the genomic side.

I was really interested that you had signed up for a bunch of companies that look at your genome, and you began describing the differences between them and the kind of possibilities through the normal person’s budget rather than researcher’s budget.

So tell me, if I am an individual today and I’m thinking about what I can do with my genome, what are the options available to me?

Swan: There are three categories of direct-to-consumer genomics options. The first category is tests for a single condition. This usually costs a few hundred dollars and might include paternity or predispositions for certain diseases like sickle-cell anemia or being a cystic fibrosis carrier. The second tier of tests is essentially looking at large amounts of your genome (600,000 – 1 million SNPs or places where humans may vary) and mapping your specific data to 30-100 different conditions.

These prices range from $100 to $1000, and have been coming down. Right now, there are five companies in this direct-to-consumer genomics category:  23andMe, which is financed by Google and Genentech, and four other companies, Navigenics, deCODEme, Pathway Genomics, and Gene Essence. As I mentioned, the prices of the offerings range from about $100 to $1000; 23andMe is offering a special price of $99 through the end of September 2009, otherwise their offering is $399, and the others range up to $1100 at the higher end for this service.

The third tier of service is whole human genome sequencing, and this is coming down significantly in price too, but it’s still on the order of $48,000 for the Illumina offering or $68,500 for the Knome offering.

I should mention that while $68,500 sounds expensive, this is down from $350,000 in less than a year, so you can see the Moore’s Law impact in the pricing, and for whole human genome sequencing, it is thought that perhaps $100 or $1000 offerings will be available in one to two years.

Al-Ubaydli: You mentioned Moore’s Law. I think you described to me the Carlson Curves that measure the drop in prices.

Swan: Yes, there is a researcher Rob Carlson who was formally at the University of Washington and he developed Carlson Curves, which are essentially the Moore’s Law analog for life sciences technologies. In fact he finds that in the life sciences segment, Moore’s Law doublings are happening much more quickly. For example, with genomic sequencing, the pace is moving at 10 times improvement per year in the capability of what we can do, versus Moore’s Law which is moving at 1.5 times per year. This is actually giving rise to many challenges in managing the information processing and transfer of all the genomic data that we’re generating now.

Al-Ubaydli: If we’re talking about genome sequencing, which costs, say, $100,000, and we are moving at an effective rate of 10, so how long until we’ll get to $1000 price?

(00:05:04)

Swan: Pacific Biosciences, which is one of the leading third generation DNA sequencing companies, based in Silicon Valley, says that their next-generation technology will be available in the second half of next year (2010), and that it will be $100 to $1000 per person for whole human genome sequencing.

Al-Ubaydli: Okay. So that’s next year. Let’s do this year’s futuristic outlook. Between the single SNP sequencing and paternity tests, and whole human genome sequencing, you find that middle run where there is analysis of the partial genome like with 23andme. If I get an account there, what can I do?

Swan: 23andMe offers sequencing for 111 different conditions, ranging from a variety of complex common diseases such as heart disease, Alzheimer’s disease, cancers and Type 2 diabetes. The company looks at research papers that are coming out on different genomics studies, and maps the SNPs in the studies to the conditions they cover. At any specific genomic location, a person may have the risk allele, essentially a typo, say a “CC” at a certain spot where most other people have a “GG,” meaning possibly being at higher risk for the condition associated with this SNP.

23andMe and the other direct-to-consumer genomics companies look at these different risk alleles or typos in your genome and merge them together for a composite risk score for a certain condition. Let’s look at Type 2 Diabetes for example. Right now companies are generally assessing 10 to 30 different SNPs to determine an estimate for your overall risk for the condition.

Al-Ubaydli: I think that’s the key. I mean, obviously there is something like cystic fibrosis having the sequence, it might tell me, I have cystic fibrosis or I don’t and that’s been around for a while and you may have the symptoms and may get the diagnosis. But this is more about risks for illnesses where different genes have different influences and it’s the combination of influences that may create your final risk score. It’s much more subtle than simply I do have cystic fibrosis or I don’t have cystic fibrosis.

Swan: Yes, it’s probabilistic information, the probability of developing one of these complex common diseases like cancer over a lifetime. One of the complaints against genomic testing is that perhaps it might be too difficult for individuals to receive probabilistic information, the percentage likelihood, as opposed to a definitive yes or no, like if you are a carrier for cystic fibrosis or not as in the example you mentioned.

In fact studies show that people are able to receive probabilistic information and the empowering part for individuals is that the probability aspect makes it actionable. Being at a higher likelihood for a disease means that it is not deterministic and that behavior may be able to shift the potential outcomes concerning a condition.

For example, in the case of Alzheimer’s disease, there are studies that midlife cholesterol levels correlate with Alzheimer’s onset, so an unfavorable allele for Alzheimer’s disease could be made actionable by aggressive midlife cholesterol management. A high-profile study from Boston University, the REVEAL study, determined that when people found out that they have the higher risk allele for Alzheimer’s, the ApoE4 mutation, they did take action. They took action in the form of increasing exercise and taking supplements, indicating that some people who are finding out probabilistic higher risk for conditions are interested in this information and take action as a result. This is one example that genomic information is useful to the individual, and that the individual may use this information as a basis for action.

(00:10:08)

Al-Ubaydli: So, I guess then what I am looking for is something that lets me log in and say, actually I have a gene that means that I can process fat quite easily. So, I can eat as much fat as I would like to, for example. But most people I guess, they’re looking for the risk factors that they should avoid this kind of food or they really need to do exercise, because they have a strong indicator of diabetes in their future.

Swan: Right exactly, you bring up the Type 2 diabetes example. If it is determined that an individual is at higher risk for Type 2 diabetes, no matter what age the person is, they could embark on a lifelong management program.

Some people suggest that the way personal genomics will matriculate into the public health system is with newborn whole human genome sequencing. Right now in the US, newborns are sequenced for almost 50 different genetic conditions which is unknown to many people, but this would be the logical place to introduce whole human genome sequencing when it becomes inexpensive. Then if we knew a newborn was predisposed, had a higher risk for Type 2 diabetes or other conditions, being in a lifelong avoidance program could be part of their general health plan.

Al-Ubaydli: So, that’s in a couple of years we’re thinking about when it could actually be cheaper to do whole genome sequences then not to do it in terms of the savings to the healthcare systems and patients health in the future.

Swan: Yes. It’s thought that each person is likely to be at higher risk for one of twenty common disease condition like diabetes, heart disease or cancer and that an earlier detection of any one condition would save $100,000 for the healthcare system.

Al-Ubaydli: That’s pretty interesting, the kind of changes you can see coming in public policy, in schools and parents, and in the patients as they grow older. It would be interesting to have newborn genomic sequencing automatically done for them. You have actually helped a lot of people sign up for the direct-to-consumer sequencing services?

Swan: I wouldn’t say that. I do enjoy telling people about the services. I don’t know how many have signed up as a result, but I do know that, in general, the direct-to-consumer genomic services haven’t had a groundswell of adoption yet and that’s a challenge to the industry.

Al-Ubaydli: Well, I tell you what, you’ve filled me in on it. So I want to start using it. What advice would you give me, if I begin sending my samples and logging into websites?

Swan: Well, I think the offerings are fairly similar, so I would select one of the lower-priced services. I think that the 23andMe offering is quite attractive. It’s $99 through the end of September 2009. However, in that offering you don’t actually get your own data, but with the regular $399 offering you do.

With any of these services, you might want to select an offering that allows you to download your own data, so that you can look for yourself when a new study comes out regarding a certain gene, whether you have the risk allele for that. Also, with your own data, you will be able to upload it to open source resources like the SNPedia, which is one of the best resources for aggregating research on genes, together with NCBI and PharmGkb, allowing you to look up genes and the associated SNPs and possibly the risk allele letter. There is ample opportunity for entrepreneurs to develop many layers of web resources so that people can understand their genomic information.

Al-Ubaydli: I’m glad you mentioned SNPedia, because the first time I met you, sorry second time I met you, was at HealthCamp Maryland, where Mike Cariaso who is the creator of SNPedia, said randomly, by the way I can analyze anyone’s genomic sequence. You were in the audience and said, I have my own sequence, because you already had a copy downloaded and you ran your sequence through his database, and he began giving you analysis on the spot.

Swan: Exactly, it is amazing to be at a place and time in history where people have their genomic data easily available for analysis with web tools.

Al-Ubaydli: So, I guess that was about 15 months ago. I don’t know if you have checked the website again.

(00:15:03)

Were you able to see differences since last year in the kind of analysis that it gives you?

Melanie Swan: Yes, Mike Cariaso has been consistently adding new studies and new information to the SNPedia, and there are 35 public genomes on the site that people can analyze, which is more than in any traditional research database. Some are whole (or nearly whole) human genomes such as Craig Venter’s and James Watson’s.

Most of the others are people with 23andMe, deCODEme or other direct-to-consumer sequencing partial genome files that they have uploaded. It’s a nice place to do research to see the largest aggregated set of human genomes that is available right now.

You can upload your own data and make it public, as I chose to do, or keep it private and just review the report yourself. So the SNPedia is quite mindful of different tiers of privacy that people would like to have with their genomic data.

Al-Ubaydli: Incredible. And so the options I have, let’s just get back to 23andMe and the other ones. I know that the $99 23andMe version doesn’t let me download the data so I can put it into SNPedia. But if I went for the full priced version, it’s about $700 or something, is that right?

Melanie Swan: It is $399 for the version where you can obtain your data.

Al-Ubaydli: Okay, this is a bargain. So I’m going to forget about that for now, just get the sequence. But, is there a difference between say Navigenics and 23andMe? I’d heard that Navigenics initially started off with the focus on physicians being involved whereas 23andMe was more consumer-facing.

Melanie Swan: Yes. Some of the companies like Navigenics and deCODEme have both a consumer-facing offering as well as the physician offering. However the main distinguishing aspect between the consumer offerings is the number of conditions covered and the price.

Navigenics covers the least number of conditions, only 28, and they are charging $999, but this is down from $2500. In the Navigenics service, they offer a genetic counseling session, but the majority of customers don’t actually take them up on this. The next offering, deCODEme, offers 42 conditions for $985, and Gene Essence offers approximately 50 conditions for $1195.

So three of the five direct consumer offerings are in the $1000 price range, and they are covering fewer conditions than 23andMe who covers 111 conditions for $399. Then the fifth offering is Pathway Genomics, which covers 77 conditions for $249 but checks fewer SNPs, and you may not be able to download your data the way you can with 23andme, deCODEme and Navigenics.

Al-Ubaydli: Now what was interesting in your presentation was that even when the companies are looking at the same sequences, they are different in their interpretations.

Melanie Swan: Right. This is an important analysis, a study I’ve been doing, which is looking at multigenic condition risk assessment. For the interesting conditions, the twenty or so complex disease areas like Type 2 diabetes, heart disease, heart attack, breast cancer, prostate cancer, colorectal cancer, etc., there is not just one SNP, or typo, that would determine your risk for the condition, but rather there are several different SNPs associated with the conditions.

From a scientific standpoint we’re only just starting to understand the phenomenon of how many different genes and SNPs may relate to certain conditions and how they interrelate.

As a result, each of the direct-to- consumer companies has PhD researchers on staff to look for new research studies and decide what’s important. This means that there is no agreement or standard and that each company has their own overall risk interpretation for each condition. If you sign up with multiple companies, you may get different interpretations of your risk.

One of the most notable people surfacing this issue is David Ewing Duncan, a National Geographic author in his ExperimentalMan project and book, where he found that one service said he had a low risk of heart attack while another service said he had a high risk.

I’ve been looking into this more specifically to see how that could be.  I’ve found three different things. First, each company looks at different SNPs. The degree of overlap in SNPs assessed between companies, even at the same locus, is quite different.

(00:20:06)

Second, companies have different quantitative methods by which they assign risk probability. Different companies assign different risk values to the risk allele based on which different underlying studies they are referencing.

In addition, the companies also have another differing methodological step. Some multiply all of the risk allele values into one product to determine an overall risk for the condition and some weigh more important studies more heavily, using a weighted average composite to determine the risk of a certain condition.

Third, the different companies are using a different average baseline risks for conditions. In the total population, for example, deCODEme assesses a 49% chance of heart attacks to the average male, whereas 23andMe assesses 21%, so any personal estimate building up or down from the baseline figure is bound to vary.

In summary, you can see how these three factors, different average population risks, different SNPs and different quantitative methodologies can result in risk interpretations that are quite different. Over time, as knowledge solidifies, offerings could likely converge, and industry standards agreements would help meanwhile.

Al-Ubaydli: How were you able to find out the reasons for these differences? Did they share this information privately or is it publicly available?

Melanie Swan: Almost 100% of my data has come from public information. The transparency is nice; most of the direct-to-consumer genomics companies make lots of information available on their websites such as the different SNPs and research references that they’re using for the different conditions, and to a certain degree their quantitative methodology.

Anyone can go to the websites under the demo accounts area and look at examples of the different conditions. Again this is why I like certain companies. 23andMe, Navigenics, deCODEme and Gene Essence provide a lot of data as to the specific SNPs they assess for each condition.

Other companies like Pathway Genomics do not disclose what SNPs they review, which is much worse from the standpoint of establishing credibility in a customer-facing offering. Consumers need to see specific information to compare and validate the offerings.

Al-Ubaydli: Okay, great. So that’s one company off my list. I definitely support the openness that allows peer review. It must have taken you a long time to collect all this analysis, but I’m really glad that you did, so thank you.

Melanie Swan: You are welcome, it didn’t take that long and I think it could be a helpful analysis.

Al-Ubaydli: So, when someone who is new to a direct-to-consumer genomics website, what do they worry about that they shouldn’t worry about?

Melanie Swan: I think this is one of the reasons that there hasn’t been more adoption of direct-to-consumer genomics in general. People might be worried that genomics is only going to be negative information, things that they don’t want to know. Or they think they may know everything already from family history.

Secondly, people may think that the information is deterministic rather than probabilistic, and may not realize all of the actions that they can take, once they see the data.

Al-Ubaydli: Do you have any advice for communicating with family members about direct-to-consumer genomics testing?

Melanie Swan: Cultural norms haven’t been developed around genomic testing yet. Obviously, your genomic information came directly from your parents and it’s also going to be quite similar amongst siblings and other family members.

Therefore, it’s definitely good to think about discussing testing with your family before you do it, for example, would they want to find out the information you find out, particularly if there is something negative, since it may be the same for them? In my case, I discussed with my family that I was thinking about doing it, and they were quite supportive.

(00:25:00)

Then later I shared the results with them. We looked through my results and I pointed out conditions that were higher or lower risk, and that genomics is only a third of explanation of whether you will get a disease in many cases and that family history, behavior and environment may comprise the majority portion of your health picture. So that was really the context of the discussion when I shared it with my family, overall what can we do to reduce health risks.

Dr. Mohammad Al-Ubaydli: What do people not worry about that you think they should worry about when they start using these kinds of services?

Melanie Swan: Genetic privacy is something people think about quite differently. In general with technology adoption, there is an age tiering that goes on; different age tiers of people may think about and adopt technologies differently.

With genomics, there are three tiers, the 20s tier, the 30-40s tier and the 50-60s+ tier. The 20s tier is the Facebook generation, the social networkers, and in general they are not really concerned with genetic privacy at all.

However, for the other two tiers, the 30s-40s and the 50s-60s+, genetic privacy would probably be cited as one of the top three reasons why they might not participate in such a service.

However, I think that the notion of genetic privacy is Pyrrhic in the sense that we are shedding DNA all the time and it would be quite easy for somebody to collect our DNA if they chose to do so.

In fact, there has already been one lawsuit in the US in regard to a divorce settlement where a wife had her husband’s clothing genotyped and found female DNA that was not her own on it. So the notion of genetic privacy is silly, to think that we can protect that.

There are some interesting cultural reactions to genetic privacy. The UK Genetics Commission has out for comment right now a policy where it would not be illegal to collect somebody else’s DNA, but in order to sequence DNA, you would need to sign a qualified statement that it’s yours or why you have the right to sequence it. This is trying to govern genetic privacy on the sequencing end rather than the collection end.

There is another argument that DNA privacy is not even desirable. We live in an open society, not a dystopia like the example portrayed in the genomics-related movie Gattaca,   and the more genomes we can get sequenced, the more quickly we can make medical progress. Nobody’s genome is perfect, everybody has some potential disease conditions that will be increasingly actionable over time and perhaps we should work on these remedies and not be overly focused on the privacy issue as long as genetic non-discrimination safeguards are in place.

Dr. Mohammad Al-Ubaydli: That’s interesting. Just for the record, the lady who sequenced the genome on her partner’s clothing was later fired because was a state employee at the time and used state equipment to do so. Apparently she was an award winning biologist and a forensic scientist.

This is also an interesting warning in choosing your partner, but presumably hopefully in the next couple of years, the UK will begin making that kind of analysis illegal.

Melanie Swan: Yes.

Dr. Mohammad Al-Ubaydli: And you’re right, privacy should be at the analysis stage because it is unrealistic to try and ban it at the collection stage.

Melanie Swan: Another point I’d like to mention regarding consumer empowerment is that the research community and the public health community have been somewhat paralyzed by genetic and health privacy concerns, and that individuals can reverse this by making their own data openly available. This is the power of individuals having and controlling the use of their own data.

(00:29:58)

Researchers may not be able to look at the genomes of others without their permission, but there may be large public databases like the SNPedia where individuals have open-sourced or contributed their genomes to help with research, which is by the way, conducted by traditional professionals and increasingly any other interested party.

Another example of individuals granting permission to their genomic data could be dating websites where individuals could privately include their genomic information so that carrier status for recessive traits could be automatically assessed in the websites’ matching algorithms.

00:30:28

Dr. Mohammad Al-Ubaydli: A sort of Creative Commons License for genome sequencing?

Melanie Swan: Exactly, it is imaginable that $100 whole human genome sequencing would mean that many people would obtain their data and some portion would be happy to contribute it to public biobanks on the Internet. Even 1% of US adults contributing their data would make a significant health resource. This obviates HIPAA privacy concerns in the US since certainly healthcare professionals cannot disclose patient data, but individuals can post their own data publicly and this may be one of the biggest growing health resources.

For example, 23andme has 30,000 partial genomes in their database, vastly greater than US NIH’s 1,000-2,000 member GWAS studies, and these larger scale databases are already triggering new research findings.

Health social networks like PatientsLikeMe, an open source health community, has the biggest aggregated set of ALS patients in the world. At PatientsLikeMe, people with ALS or twenty or so other conditions come to the website, sign up with a name and picture, and often post daily information about their symptoms, remedies and so on. It is a tremendous resource for pharmaceutical companies or anyone researching ALS or the other diseases to have a pre-aggregated, pre-qualified searchable patient community from which they can source people for clinical trials or other purposes. Patient communities are also starting to run their own clinical trials.

This is another great example of the power of patients, empowered individuals posting their own data openly on the web.

Dr. Mohammad Al-Ubaydli: So just to clarify, when you showed me your 23andMe profile, you actually hadn’t put your identifying details on that, you put a different name. So you could share your genomic data to other people but you wouldn’t also compromise your privacy.

Melanie Swan: Yes, it’s an interesting point. When I first signed up for 23andMe, I used a pseudonym but I would now change that if I did it again. When I uploaded my data publicly to the SNPedia, I did post it with my name, Melanie Swan, and additionally I put a picture of me, so the people can see the phenotype too.

Al-Ubaydli: Okay. So you really actually like your genomic data very clearly identifiable. It was different in the beginning and you’d want to do it differently today.

Melanie Swan: Yes, initially I decided to use a pseudonym when I first signed up with 23andMe, but since then my views have become more open such that I am quite happy for my genome to be publicly available.

Al-Ubaydli: I know that the social network aspect of these genome sites is that you can look at genomes of other people and they can follow you too. Have you learned anything from looking at other people’s sequences?

Melanie Swan: Yes, I am friends with perhaps 30 or 40 people on 23andMe, we are sharing our genome at different levels.

There are two different levels, sharing ancestry and sharing full genomic data. 23andme is a Web 2.0 website with a Comment section at the bottom of many areas for community members to interact. People with certain conditions might find additional information and research on their own and add to the comments such as “recent ‘Nature’ article regarding condition X, here’s the link.”

Haplotype groups is another area where I’ve seen interaction in the social networking sense on the 23andMe site, people comparing genealogy information.

[Cross Talk - 00:34:41 - 00:34:51]

Al-Ubaydli: This sounds really interesting. Is there anything else I should have asked that you would like to talk about?

(00:34:57)

Melanie Swan: The reason I have been researching the direct-to-consumer space now is because I think it’s important and high impact. However, the reason I got into it two years ago was from a personal health perspective. Specifically, I have a risk of colon cancer in my family and I wanted to find out from a genetic perspective if I have a higher or lower risk, and use this  information in my decision of whether or not to have a colonoscopy as a preventive screening which wasn’t covered by my insurance plan.

So there is an extremely practical reason that drove my initial sign-up and I have since found genomic data to be interesting in many more ways. In my case, I found out that I did not have higher genetic risk, at least as far as studies that 23andMe is looking at, which we know may not be completely definitive from a scientific perspective yet, but that at least I did not have the risk allele for some known SNPs, information which  I then used in my medical decision-making process.

I have been to two different doctors with my data from 23andMe and the first one said, “I have no idea what to do with this” and the second one said, “genetic data isn’t clinically useful.”

Both of these instances made me realize that healthcare is really shifting and I think the traditional healthcare system will not be the ones to implement preventive medicine and that the PCP, the Primary Care Physician, may go the way of the stockbroker and the elevator operator; replaced by the individual directly accessing automated web services and electronic medical records.

It could relieve pressure on healthcare systems if automated web tools can take care of this first level of medical information and diagnosis that individuals need. A doctor could be just one aspect of the health advisory team of the future. In preventive medicine, there is a notion of n=1, that you do your own health management and even clinical trials on yourself. When n=1, you don’t compare yourself to other people in your demographic category, you compare yourself to your own history, where you were a month ago and over the last months and years. Looking at what’s happening with you, not what’s happening with the demographic average is where we are going from a preventive healthcare perspective.

Al-Ubaydli: Do you have any advice for 00:37:44 clinicians that you are going to bring this information to, they obviously cannot be specialized enough to understand this. They are not geneticists, but this is your PCP and they are going to have about say, 10-20 minutes with you. How should they handle you coming with that information? What’s the best way to do so?

Melanie Swan: Yes, right now most physicians tell patients that genomic information is not valid or actionable yet. What I think is going to happen is that genetic data will actually pass into the public health system easily. I think it will be in the form of tick boxes on the blood test menu that physicians order for patients, and interpreted in ranges.

Physicians are smart individuals and they receive 100-200 hours of continuing medical education in the US. For example, I am involved with some conferences focused on exactly this, presenting the key aspects of genomic medicine to physicians. With a minimum of training, doctors could be able to assess genetic tests quite easily and if somebody is at higher risk for a variety of factors, they may refer them on to a specialist more quickly or for more vigorous screening more quickly for breast cancer or prostate cancer for example.

I think that the genomic data will be rolled up into an easily digestible format for PCPs and that they will be able to incorporate this data into their care regimen without being clinical geneticists themselves.

That’s the end game with genomics in the next several years. Right now what might be useful for a PCP to facilitate the development of preventive medicine is to encourage patients to collect their health histories for input into electronic medical records, and engage in self-tracking, collecting ODLs, Observations of Daily Living, where patients say, keep a headache diary or a pain diary. Physicians are starting to recognize this as a valuable component of a patient’s healthcare record and that it can be incorporated in their care, particularly moving to preventive medicine where n=1.

(00:40:23)

I think any manner of self-tracking that patients are doing, and self-data collection and self-education should be encouraged, and for individuals to seek additional resources on the web and to be rigorous in their analysis since this could be useful for their health. There is a key change occurring in that individuals are starting to perceive health as a self-responsibility rather than the responsibility of the physician.

Al-Ubaydli: I fully agree. I mean, I’ll say that the normal physician has about 1 hour/year with their patient and there is another 8,000 hours if that person has to just be alive and continue with their lives. And if you can get the patient to help you out to collect data during that time, your consultation is much more efficient and also you can integrate a lot more useful data than you can just by asking the patient during that one hour that you have with them.

Melanie Swan: Absolutely, there was a Pew Internet study, The Social Life of Health Information, published in June 2009 finding that 61% of Americans look for health information on the web.

So, it’s clear that we are already in an era of information seekers, all patients are potential health information seekers and physicians should expect that this would be a component of a patient’s knowledge and activities.

Al-Ubaydli: Well, Melanie I really appreciate you helping me to become such an information seeker. I am really excited to sign-up now.

Melanie Swan: Thanks.

Al-Ubaydli: We’ll prep the links to the papers that you mentioned on the website. Thank you very much for being on the call.

Melanie Swan: Excellent. Thank you very much for the opportunity Mo.

Total Duration: 42 minutes

Full transcription provided by Tech-Synergy

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Dr. Mohammad Al-Ubaydli: Welcome to the Patients Know Best podcast. I am here with Michael today. Michael, thanks very much for joining us.

Michael Stollar: It’s a pleasure. Aloha!

Al-Ubaydli: Aloha! Michael, tell us a bit about your background.

Stollar: Sure. Well, I have been with the Hawaii Blue Cross Blue Shield plan known as HMSA, Hawaii Medical Service Association, for the last 23 years. And prior to that, I was a Peace Corps volunteer in the beautiful Kingdom of Tonga further down in the South Pacific. And I am originally from the East Coast of the States, from Boston, and I am glad to be out here in Hawaii, particularly when February rolls around.

Al-Ubaydli: Well, then at another podcast, I am going to ask you about Tonga, I am guessing you have a ton of good stories.

Stollar: That’s wonderful.

Al-Ubaydli: But today, I was very interested in the social media work that you are doing with HMSA. Tell me what you are doing there?

Stollar: Okay. Well, first of all, we are in the middle of a transformation of our entire health plan here. Recognizing the sort of looming changes coming to healthcare in the United States and in preparation for reform efforts, in just our general strategy and understanding that the system is not sustainable as it currently is, we are looking to change ourselves and realign, with all the stakeholders in the sort of the healthcare ecosystem up here, so that we can end up with a more sustainable system.

So, part of that transformation includes changing ourself and we realize that we need to — as a major player in that ecosystem, we need to be more collaborative, we need more innovation, we need more creativity. So for me, of course, it fits the bill on many of those attributes very well.

So we’ve undertaken some tactics which introduce social media as a means of changing our own culture and then reaching out and changing how we interact with all of our stakeholders.

Al-Ubaydli: Okay, so it’s interesting to me because everyone says they want to do more innovation and everyone says they want to more collaboration, but you are actually doing this. So, what are you doing with, I guess, your patients, your providers, all of these stakeholders you are working with in social media what are you doing with them?

Stollar: Okay. Well, we are at different stages with different stakeholders and included in those stakeholders are our own internal employees recognizing that we have to change and sort of figure out how to deal with all of this before we just go broad based, across the spectrum of all those stakeholders. But let me give you some ideas of the different things we are doing with the different entities.

So internally, we have begun, we have introduced blogs, wikis and forums as pilot projects and we have just had an explosion of the information sharing and collaboration and ideas; some controversial, some not, everything from management practices to how to Go Green internally, to discussions on healthcare reform, to IT policies, you name it. People now have a means to talk about it and I think we had a lot of pent-up opinion out there that really had no place to go.

So the introduction of these tools, these three tools, initially has really led to a lot of good openness and sharing and that’s something we want to reward and continue to develop because our next step will be to take blogs, wikis, and forums out live to our stakeholders and to the community in general.

So, this has sort been a preparation phase with those tools. In two weeks, we are about to introduce internally an idea generator’s application from Salesforce and that then lets people submit ideas that lets other people vote on those ideas and comment on those ideas and it provides a workflow application for management to then vet those ideas and make sure that they get addressed and for those that are valuable to be implemented and for management to feedback to people on the idea generation.

We intend to take that out in public as well, probably in the second quarter of next year. We have begun twittering.

(00:05:15)

Al-Ubaydli: Okay, but what’s your Twitter ID?

Stollar: Well, we have a number of them.

Al-Ubaydli: Okay.

Stollar: So, we have number of them based on the subject, so we have one for our senior program called Akamai Living. We have, one for our discount program called HMSA365, we have one for our ‘Island Scene’ magazine which is a health and information magazine for all of our membership. We have one for health pass which is our Health Risk Assessment program and we are slowly moving into — and we are just tracking in general what’s going out on the Twitter world. We have those accounts and we are just slowly sort of some or more active than others.

I think the ‘Island Scene’ is particularly active, since it’s publishing articles regularly. I think it has a fair number of followers or at least beginning to get those followers and have real exchanges with them.

So, we are just, I would say, in the infancy, we haven’t yet, although we do have plans to have a general sort of customer service account out there. Not where we will service people, but we will help them find the right places to come into the servicing sort of matrix we have, simply because we can’t get into the service issues all out to public because of HIPAA regulations.

Al-Ubaydli: Sure. So, this is, instead of an employee calling their phone number, for example, they would start talking to you on Twitter and getting help that way or how does that work?

Stollar: Well, it works in variety of ways. On the service side, sometimes it’s just other people having exchange about, I wasn’t able to find a doctor or I don’t understand, maybe it’s someone else’s exchange that we can then follow up on.

For instance, recently, we have a group of teachers who left us as an account and we identified some conversations they were having and when they were able to come back to us, their leadership invited us back in as an option. We were then able to Twitter to these people who were interested in those conversations and address some of their concerns, answer some of their questions and guide them to other information.

Al-Ubaydli: It’s a really interesting example. So that’s for the members, I mean, you have mentioned also all the internal tools you have for the employees. So why do they find those useful instead of the water cooler (ph) or the previous chains of command they had.

Stollar: I think, out here we call it the Coconut Wireless, and I think it’s build very much in play. I think the advantage now is that one, more people can be involved. Two is, if management or anyone for that reason wants to get out a consistent message that isn’t sort of rumor mongered or you know the old telephone tree where everything sort of changes. These tools provide a leg up on all of that in terms of consistency and reliability. We have also, just before I forget, introduced a YouTube account or we have a YouTube channel, if you will.

Al-Ubaydli: You have a channel?

Stollar: Yes.

Al-Ubaydli: Okay.

Stollar: And it’s called HMSA Now on YouTube. And we have a variety of customer service videos, we have information about HMSA, we have information from other organizations about general healthcare topics, we have all of our video advertising, we have Teen Video Award videos out there, we have lots of different information and video for that is out there. Some of it, customer service related, and some of it, general health information.

Al-Ubaydli: I am just thinking on the site, you may have actually got quite a few videos.

Stollar: Yes.

Al-Ubaydli: And so, as your employees begin using all these tools, what do you advise them?

Stollar: It’s really interesting because we are, we have a small group of employees who are very anxious and very involved to use these tools.

(00:10:00)

We have a great silent majority of people, and part of it is just our culture out here. Hawaii has a very unique culture as you might imagine. Being loud and open is not part of that culture. So for some people, it’s been a challenge to get them to open up to share opinions, and one of the things we did do as a starting point internally was we allow people to post on the blogs, just the blogs anonymously for now.

That seems to help. There is a lot of people who now post in such a way and there has been a lot of discussion actually about, is that valid, should we allow that. But right now, we figure that it’s the best way to sort of get people used to sharing their ideas and opinions. We have had some controversial topics, and it was fascinating to see how the crowd or the masses of people sort of reacted and controlled the subject.

I think some of our senior management, initially when the controversy rose, was a bit concerned. I mean, we sort of theoretically knew we would face this some day, and it popped up fairly early, and –

Al-Ubaydli: It always does.

Stollar: It always does, and it was handled beautifully by just people in general and management didn’t need to do a thing.

Al-Ubaydli: That must be interesting for management to witness but it took care of itself, I mean it’s a tool that can be used to take care of other problems in the future.

Stollar: Absolutely. There is a lot of people who support, are very supportive of what we do, and they jumped right on the issue and they sort of isolated and made arguments. We just have to sit there and watch what happen, and have faith that it would happen.

Al-Ubaydli: Are you able to share, because I don’t to ask you to discuss something that’s embarrassing to the HMSA. Are there any details you can share about that or I can move on to my next question?

Stollar: Well, let’s just say that we have folks coming from the mainland who have a very different perspective on work and relationships and how things get done.

Al-Ubaydli: Is it the 00:12:39.

Stollar: Yeah, three years in Tonga took care of that.

Al-Ubaydli: Okay.

Stollar: But, mainland folks who tend to be more brash and open in your face, and they made some commentary about the local approach to things and it really was right at the edge of where they should have been, but people jumped on it, and they address the issue.

Eventually, the individual apologized and I think came to a better understanding of how things are done here in the way to get things done here. So that worked out really well.

Al-Ubaydli: It’s very interesting. I remember here about the CIA have their wiki and they created their wiki so that any CIA employee, who is working in a different part of the world, they can kind of quickly understand the local culture. I think the big part of it was that they allowed anonymous editing.

So that people can speak and say things that would be normally embarrassing to say, but actually quite important for you to understand. Apparently, it’s tremendously useful now to keep it at all levels. Everyone finds it very useful, but precisely for that kind of group editing.

Stollar: Yeah, I can believe that. It’s really quite helpful. We’ve had less controversial issues come up when we get that same sort of editing. Another example of our cultural hesitancy to be out there and be open and then you face — we tend to have several times a year, a couple of large management meetings with our strategic or tactical planning or review. In our last one, we introduced a wall, a texting wall, where people could –

Al-Ubaydli: Oh I see, (Voice Overlap)

Stollar: Yes. So during the meeting as speakers were talking or discussions were taking place or exercises were going on, people really opened up, up on the wall which, of course, is anonymous versus — because maybe they weren’t so comfortable expressing that verbally.

(00:15:06)

So at the beginning, I mean that’s not where we want to be long-term, but it’s a beginning of people building some trust in the tools and in how I believe management is going to react to different ideas. I think there had been a more traditional, paternalistic sort of management approach that’s part of our cultural transformation, because if we can’t do it internally, how are we going to do it externally to change the healthcare system.

Al-Ubaydli: So, what have you learned from watching the employees in management use these different tools?

Stollar: Well, I think, first and foremost is what we’ve touched upon already is that you can trust in people. I think, secondly, that the number — that there is a tremendous amount of creativity and energy that if we can just sort of harness it properly, is going to just lead progress forward, and that it’s been sort of dormant or we’ve made it dormant, but it’s there. Now it’s time to unleash it and just figure out how to do that properly. I think that’s the most exciting part of all of this.

I believe that then feeds a changed mindset for people and makes us very attractive place for younger generation to come to work. That’s something we’d like to achieve as well. Ultimately, prepare us in such a way that we will be flexible and creative enough and fast enough to deal with just this grade unknown, we’re all about to enter into with healthcare.

Al-Ubaydli: Yeah, that’s a huge mandate. It’s been funny watching things ever from the UK. I was in the States after a year ago. But when you guys have debates, you guys seriously have debates. Are you ready in place watching it?

Stollar: The way our media channels now are all sort of so politically out there, it’s — I’m impressed that you called them debates not as yelling matches, although parliament is pretty interesting too.

Al-Ubaydli: (Voice Overlap) I think the parliamentarians are supposed to take pride in their politeness, but I haven’t witnessed it.

Stollar: You haven’t witnessed that, yeah.

Al-Ubaydli: I haven’t. I think, it’s just kind of obnoxious to each other. But let me ask you, I was going to ask you about when using social media, what do people worry about that they should not bet — I think, you’ve already begun answering that by management, for example, thinking they all do intervene, but actually, the problems begins to solve themselves.

Stollar: Right. I think that’s true. I think, the next — we’ll take it up to the next level of worry, if you will, as we go public. So, as you know, health plans are pretty easy targets for people. We pride ourselves on the fact that we’re a nonprofit. We pride ourselves on the fact that we have a very low, probably the lowest, if not next the lowest operating expense of any health plan in the country.

So we pride ourselves on all those things, and think we have a model that others could follow on how to do it right, but that was still a target. So when we go public, we know, and I think there is some trepidation that we are going to get hit with the usual accusations and unhappiness of certain element of people.

I think, one need to be and will be prepared to address those issues and concerns and do it in such a way that then we can move on to, hey, there are other ideas out there. People want to share ideas. They want to talk about subjects and not just be out on the attack all day. That’s the chasm we want to leap over and get to, where we really are now having meaningful exchanges.

We’re helping people solve problems, they’re helping us solve problems and it’s a real collaborative effort. Other things to be afraid of, I think, we are feeling pretty comfortable right now with social media. I think, we still have a long way to go in terms of using it to its fullest.

(00:19:59)

Particularly on Twitter, we just need to learn how to go from being a corporate entity to having a real human voice and personality on the other line or on the other end of the account, because for so many years, it was just here as a corporate response and nobody wants to deal with that. They want to deal with real humans and real ideas and real exchanges and culturally, that’s one of the things we have to continue to work at.

Al-Ubaydli: It’s interesting when you mentioned that kind of text that will inevitably come and to get public, but I’m reading about that there’s a nonprofit that was documenting on the Google Map and ever saying that your government employees are doing it. So they fill that portal here, they picked up some garbage there. And thing is people who are looking their websites, I mean they’re going to the websites to kind of document the things that weren’t being done. But actually, they come over and I think they actually — I wasn’t aware that my government was doing that. I wasn’t even aware that they were doing stuff all day, everyday.

So you kind of hear about health insurance companies always and they did not need coverage. But actually, I think that if you kept up the public, it will become transparent to people, just how much you do everyday and how much work all your employees are doing everyday.

Stollar: I think that’s a great point and we have a push on transparency and I think that if we do it well, people will see the very things you’re talking about. I think we can make the case easily and show them quantitatively, set denials are not part of our business model and that people are actually trying to help improve the health and the lives of people here and show them all the work that’s being done. So, I think you make a great point.

Al-Ubaydli: So, let’s get to question nine. I mean what should people actually be worrying about that they tend not to at the moment when they were 00:22:02 new to this?

Stollar: I guess it would strike me as you need to have managements stay in the course. If you’re going to buy into this as a strategy and not just technology for technology sake, we’d have a little bit of that and that’s been something we’ve worked hard to overcome. It’s crucial that if you dive into it, you have to really work to stay the course, you have to believe in it, you have to put the resources on it to make it successful.

It maybe difficult, especially for the financial people, to see the initial return and sometime — you have to start talking and things that are different than return in different ways. I think you have to start talking in terms of expectations, in terms of the change in society and the comfort level of people in general with the new tools and that if you don’t begin to take advantage of these tools to fulfill your strategy, you will miss an entire emerging market segment. I think that’s something to worry about. It’s — yeah, go ahead –

Al-Ubaydli: Well, I didn’t ask you at the beginning, I do apologize. But is your role in — as one of your many of roles in HMSA to actually train people how to understand these issues or are you just a captain who’s maybe been charged with using the technologies? How is the organization going to –?

Stollar: I would say, I’m a bit of both. So, our job is to make it so that people understand the issues and that the issues both with the technology and the issues we’re dealing with in healthcare, internally and externally, as well as just keep pushing a little bit on the envelope here on what we’re doing and how we’re doing it.

Al-Ubaydli: I think it’s pretty cool. Advancing, I 00:24:17 really interested in what you’re doing.

Stollar: I guess the only thing I didn’t touch on was some of the other tools we’re using, we’re helping departments here develop their own video capabilities. We’re moving into more shared meeting and streaming of events out to all our employees. So if we have a speaker come in, I mean those are applications, you mentioned some of the external stakeholders.

(00:24:52)

Having some of our trainings that we hold and some of our presentations, particularly for the physicians and being able to stream those, because it’s very hard for the physicians to get away, being able to stream those and/or capture those as whether they are video capture or PowerPoint captures or podcasts or just any other media where physicians at their convenience can go and get this information.

That’s something that we intend to move into very strongly and similarly on the employer’s side, but that often takes a lot more — that’s easy to do just during the business hours of the day. So, I think there’s a tremendous amount of application for our physicians who just can’t get to these things during regular business hours.

Al-Ubaydli: Yeah, I think they have been 25:43. So you’re actually pushing teaching materials to practicing clinicians about dealing with it, is it on how to deal with HMSA or CME (ph) products or what is it?

Stollar: Yeah, it would be two things, it would be both issues of how to deal with HMSA, so sort of the administrative issues, how to file or whatever new things are coming. But it would also be things that would relate to issues on care delivery, evidence based medicine, changes in delivery models like the patient side of medical home, all sorts of information that we can put out there to help people understand where, how things are evolving and what’s changing, at least, from our side, and putting things out for input on their side in the delivery system.

Al-Ubaydli: It’s really interesting. Michael, this has been great! Thank you very much for you time.

Stollar: It’s been a pleasure.

Full transcription provided by Tech-Synergy

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Dr. Mohammad Al-Ubaydli: Welcome to the Patients Know Best podcast. I have Fred with me on the line today. Fred, it’s great to have you with us.

Fred Eberlein: Pleasure to be here.

Al-Ubaydli: Fred, tell us a little bit about your background and how you got started in ReliefInsite.

Fred Eberlein: Well, my background is in Information Technology going back to the late 70s when they started off working for great company called Control Data Corporation, no longer around. They were a pioneer in scientific computing.

So I have been deeply involved in IT in various facets of it from hardware to software, from academic to business. Of course, you know, in my lifetime and all of ours I think one of the great cornerstones or movements in the IT has been the Internet, which has really taken computing to a whole another level.

Around 2000, I broke away from my traditional background and working for others and ventured out of my own and at that time I initially invested in a small company in Virginia doing work in fertility planning and it was shortly after that; that I came across an opportunity in pain management.

It so often has been the case in healthcare, the protocols, the tools, and what not are there, but the automation has been lacking. And what I identified was the tools that are currently in place have been for about 30 years in pain management for helping patients to record key aspects of their pain.

So I identified that as a working protocol, but I also learned, much to my surprise, and I guess therein might be opportunity that none of these had been automated.

So that’s what brought about my interest in ReliefInsite. It was initially just a concept back in June of 2000 and I began to researching and actually filed first. The idea was to file some patents in September 8, first patent, in September of 2000, and went forward from there.

Al-Ubaydli: So you have the website ReliefInsite that kind of allows the automation of collection of data about pain?

Fred Eberlein: Yeah that’s correct. What we are doing –

Al-Ubaydli: Go ahead. Sorry.

Fred Eberlein: No that’s okay, if you want to finish the question.

Al-Ubaydli: You know, I am just going to ask, so what does the company do on the site? What do people do using that tool?

Fred Eberlein: Well, first of all I should point out this is a secure HIPAA compliant website and it’s opened to patients. Our main website at ReliefInsite.com is free to patients and providers. Patients, once they’re registered and in course of the registration, they identify their primary pain. They can actually record and registration of the five pains altogether which is not uncommon for many of our users. I am sorry to say.

They also indicate diseases and other conditions they have, but essentially what they do with our services is to record the pain location on body maps that we have in Flash. For each location, they can indicate pain intensity. Then they record other key aspects of pain tracking such as characteristics of pain and symptoms, the impact that is having on lifestyle.

So we have this series of scales that patients use for recording impact on lifestyle and we also track medications and treatment.

So this is all recorded. We’ve worked hard to keep it quite simple so that patients can pick this up and use it and we work to make it intuitive. There is always room for improvement in that regard.

What really is important about this though is that we take all that information and we aggregate it in our reports module, it’s called Reports+ and that’s a key part of this survey.

So we aggregate this information to show longitudinally that is across time how the patient is doing and we compare pain levels with lifestyle and the impact the pain is having and symptoms and other.

All the variables that I mentioned are charted and graphed into standard or customize reports and the patients can see that information. It helps them to understand better their condition. They can save it in PDF format, print it, bring it with them to their doctors and they can also share the same reports online securely with their providers, family members, friends, and others. There is no limitation to the amount of sharing they could do.

(00:05:09)

So that’s kind of a quick overview of the service. On the provider side, providers as they say can also register through our site. It’s free to them and they can push invitations to patients. And when they do that, there is a link in the invitation or as if in an electronic invitation and when the patient who receives that invite comes to the website to register. They are asked if they want to share their reports with the provider that initiated that.

The provider name is shown, and they just need to click a box. And that then shows that patient’s name in the provider’s console. So when they log in, the provider, they can see all the patients that are using the service. All they have to do is click on the patient’s name to be taken into the reports.

This is a big value for providers not only because it helps them from a clinical standpoint to see longitudinally how the patient is doing, but it’s also a minimal amount of work for them, because this is a patient populated record. The information is populated, provided by the patient. It’s a data bank of information securely kept and backed up by ReliefInsite, that the provider can get to it anytime if they want to see that.

That can be very practical, very helpful for them to review that information. They may be providing consultation over the phone to patients. Or certainly to have that information available which they can print out before the patient comes in. Of course, they can incorporate these reports into their electronic medical records or to the patient’s chart and hard copy.

Al-Ubaydli: How does this improve existing process? Because the patient could already tell the doctor, I have pain in my hand and the doctor could always ask the patient, show me where you have pain. Now, why does looking at a website and all the data that the patient is entering, why that’s an improvement over the already existing workflow?

Fred Eberlein: That’s a good question. In the case of acute pain, in other words, I just happened to slam the gate on my middle finger, as I did a few years ago, what you just described is adequate. I go to the doctor, obviously the finger is swollen and very painful and of course they assess it and provide me pain medications and treat the finger accordingly. So, for an acute case like the one that I just outlined, that approach is fine.

For chronic pain, which is really what we are targeting here, so it’s good you raised this question that will draw the distinction. Our services principally for patients with chronic pain conditions. Of course, chronic is long term pain, and very often these are complex pain conditions, not even — I would say low back pain is not considered a complex condition, Fibromyalgia may be.

But any of these complex or I should say chronic conditions, it’s important to monitor them across time to really see first of all how the patient is getting on, how it’s impacting their lives and how are they responding to treatment, whether that’s biomedical treatment or complimentary alternative medicine, exercise, what have you. It’s important to be seeing how they are fairing. It’s important for the patient to see that.

So, we don’t recall so well how the med helped six months ago, nine months ago, or the exercise program. It’s hard for us cognitively to map that out our minds across time. So we are helping to document that and that documentation through ReliefInsite tells a story and that story is very important to the patient and the people treating the patients.

So again, big difference here between acute and chronic pain patients, and ReliefInsite is predominantly a tool for treating chronic patients or helping people with chronic pain to get better treatment.

Al-Ubaydli: Now, I am glad you brought up the sort of looking back another six months, because I was thinking only yesterday when I was with nurse, I have a genetic immune deficiency and I keep a symptoms diary for my nurse of when did I have coughs or cold and so on. Previously I would just go and say and she would ask how things been going and I’d say it’s been okay or I have had a couple of infections. But because I kept a diary of the last six months, yesterday was the first time that I could sit down her say, I had three colds. There was one that was bad, it required antibiotics and the other two were fine. So I am actually — I am okay.

(00:10:08)

This was the first time that I felt I should actually tell her accurately what happened. I suppose you are just following what happened every six months. Then I also — you once mentioned to me that even if you know clinicians don’t look at the data, just the act of documenting the patient history is a little bit therapeutic for the patient. Is that correct?

Fred Eberlein: That’s true and I must say that’s been one of the pleasant surprises that we’ve witnessed since releasing ReliefInsite which incidentally was commercially release in August, 2007.

We had a beta for about 50 months prior to that. But yes this is a very good point. I have been pleasantly surprised by the number of patients that have commented to us about their feeling of empowerment for lack of a better word. Obviously that’s a popular phrase, but they describe it other ways. Some indeed, for them it’s empowerment.

But irrespective in all cases, it’s been this self — this feeling of control and through control they have less pain. Now pain is in the head. It’s certainly a biological thing, there is no question about it, but how it’s interpreted is really at the essence of the patient experience.

So it’s very gratifying to know that control, documenting it, seeing it, understanding it helps. I think of about 10,000 patients, we had one and it’s true you should not preoccupy with your pain.

We had one who said stopped using it or using it less, because it made them fell more pain. So I just need to be objective about it and the majority of cases from what we have seen, and this is anecdotal, we have not conducted any studies on this in other words, but from the majority of feedback that we have gotten and I am going to say, it’s not overwhelming, but I would say we have had 30 or 40 or more users who have written to say things of these nature where documenting has made them feel better, made them feel more in control.

I have actually had some said they enjoy sitting down to do this, which is remarkable. We had one case of the user saying that they felt that it exacerbated the situation. We know that can be true and it’s something we caution users, do not preoccupy yourself with your pain.

Al-Ubaydli: Now the user interface is actually quite nice. It’s quite a nice experience to sit and click through things. But it’s based on standard tools for pain measurement. Is that correct?

Fred Eberlein: That’s right. Yeah, we didn’t want to — I am an entrepreneur IT person as I said at the outset, and being aware of the sensitivity within the medical community to everything that’s happening on the Internet and many approaches that are out there that are really not scientific, we did not want to go down the path of trying to better tools. What we wanted to do was automate known and existing standards and methodologies and protocols.

So that is exactly what we have done here. Everything that’s in our site is based on pain research and we update that as required, although there hasn’t really been a need for changing any of the logic in that context. Because, they said most of the logic protocols for pain management have been in place for about 30 years.

It still backs actually to a gentleman Ron Melzack from McGill who has a PhD, did a great deal of work in the 70s in this area. He is retired now, I think partially retired. But Dr. Melzack started the work in this area and others have built on it.

So we have researched this, we have worked with clinicians in understanding it and we have adapted it in ReliefInsite and of course for working on the Internet. The power of this is aggregating the data, as I was saying earlier in reports and having it timestamped. That’s been of the big, big drawbacks to the protocols being on paper. When patients have been asked to keep journals of their condition, they are very often questioned, not believed by the provider, and this is not mocking the provider, because they see everything written out in pencil and they speculate that.

(00:15:08)

Jane Doe just did it this morning in the parking lot. Sometimes it’s just that Jane Doe likes pencils. So, one of the problems when treating people with pain is that, you haven’t had time stamped records. We overcome that. Everything we have in our system is time stamped and whoever is looking at the records can see when the entries were made, they can see how many entries were made, how many were deleted, how many were changed. So, that’s one of the big benefits in doing this in an electronic form.

Additionally, of course, there is mapping out across time, because even the paper versions of the same don’t allow one to map this information across time longitudinally. You will have to take those forms individually and plot them out somehow and not only is that time consuming, it’s error prone and extremely impractical.

Al-Ubaydli: This routine testing, I mean, you have already began touching on the worrying to get patients that just to be careful, not to use your site to remind you of your pain rather than documenting your pain? In general what do you advise people as they begin using your product?

Fred Eberlein: I didn’t get the last part, what do we advise people what?

Al-Ubaydli: When they begin using ReliefInsite, what do you advise them?

Fred Eberlein: Well, I am sorry. What do we advise them? Well, we have –

Al-Ubaydli: Sorry [Voice Overlap].

Fred Eberlein: No, no, it’s thrown in my ears, I suffer from Tinnitus, so I have a slight hearing disability. But we advise our users and it’s written in our user guide also at the very beginning, not to preoccupy themselves with the pain, because that can exacerbate it and it is a very much the psychological state as it is a physical state from all my understanding of pain.

Now, what we do in the process of registration too is we have a reminder schedule. So the patient can create reminders. We don’t allow them to do more than one a day, although they can override that if they want. They could have up to three a day. It might be relevant to say, in the morning at 9 I want to remember to score my pain and at noon to record my meds and then in the evening to record my lifestyle.

But, basically within the app and the registration process, we are recommending one a day and not less than one a week. That recommendation is based on whether that patient is undergoing treatment at that time or not. If they are undergoing treatment the time we recommend one a week. So, that’s what we advise patients to do. We also advise them within the app to be realistic in their measurements.

There is a tendency for some people on the scale of zero, no pain to ten pain worst than you can imagine to exaggerate, and one can speculate as to why people exaggerate. Sometimes they have other motivations which I really won’t get into it this moment, but we do try to get them to be as realistic as possible and recording their pain and recording the impact of that pain to just keep it clean, solid record. They are going to get better treatment that way and so those — among the things that we advise the users to do.

Al-Ubaydli: Then from the clinician side as they begin working with patients like this, is there any advice that you give them?

Fred Eberlein: I am sorry.

Al-Ubaydli: With the doctors and nurses who begin using ReliefInsite with their patients. Do you have any advice for the providers?

Fred Eberlein: The advice for the providers is actually, I guess ties in with the last point for the patients too is, now that you have this record, share it, bring it with you to your appointment and share it with your doctor, because this is very, very much about improving communication between providers and patients, that’s the cornerstone of our mission.

(00:19:43)

In a like way, yes, to providers is encourage your patients to use these things. Look, go to this site, register. It’s as easy as — it’s two pages to fill up, all you have to do, the overhead is minimal, I say pages are shorts screens that ask for — address and create a password and then the second one for the provider is to give information about their practice. That by the way populates our find a provider list so that the patients existing or new patients can find healthcare providers and link up with them via ReliefInsite.

So, I encourage the providers to go and use it and to see how easy it is and just to make their patients aware of it, because unlike EMRs and so many other things out, there is the overhead involved in this is really minimal, it’s close to zero, beyond what I just said, the registration and making your patients aware.

Now, we have some providers in fact that will have their administrator, use our invitation module for firing off invitations to their patients, and that’s quite easy. They only have to put in the patients first, last name and email address and the email invitations are already prepared. The provider can edit that, if they want, but it’s quite simple and it just says, I recommend you use this service for tracking your pain, a few more words and then in that mail in embedded a link. I mentioned earlier the recipient of it, the patient clicks on that link and it takes them into registration and there it says, do you agree to share your reports with Dr. Jones?

So, we really have worked hard to keep this simple and particularly for providers to give him a lot of value with really about as little overhead as could be possible with keeping any kind of a patients record and it’s free. So, it’s hard to lose.

In our space, the pain management, the last point I would want to make here in support of providers, it’s very important to have documentation. There was the notion for some years within I think the provider community that if you didn’t have documentation, there was nothing to prove.

Well, in the court of law, it has turned out that; that thinking is bad and dangerous, because what happens when a medical doctor is put on the stand, one of the first questions are going to be asked is where are the records and if they don’t have records, then the question is going to be, well, then you must not have cared for the patient very well.

So, it’s very important for them to have records. It’s very important for them to track and in many jurisdictions it’s required for them to have records regarding prescription of opioids. Obviously, it’s a lot of ramifications with that, but we have not only state governments, but the US drug enforcement agency and others that are very keen on monitoring these things.

So, this is another value to any medical doctor who is prescribing opioid to their patients to have them use ReliefInsite for tracking that and I think the other final thought on this is that, if the patient is recommended to use the service and they are not using this service, again the medical provider has that arguments. But we have been trying to engage the patient, this is a tool we recommend they use, they didn’t use it. We made our best efforts.

So, one way or the other it’s I think for the medical doctor, in no little situation using our service and again if it’s free. So go for it.

Al-Ubaydli: I am going to just check back to, if the provider keeps the record because the patient uses the website with them, is there a danger that that provider would be locked out of assessing their record. So for example, the patient revokes access by the provider and how does the provider make sure they always have long time access or a copy of the data, so they can protect themselves medico-legally?

Fred Eberlein: Now, that’s a good question. A very good question. You are absolutely right. Certainly, in our web service that’s patients centric and that’s what we typically recommend. There is a lot of our business by the way is around and it’s revenue part of ReliefInsite is derived from customizing our service for our clients. An example of that is the recent site we developed for the pharmaceutical company UCD for helping patients with rheumatoid arthritis. That’s been a revenue model for ReliefInsite.

So back to your point, you are absolutely right, the patient at any time can within, what we call, our sharing partner module deletes anyone that has access to the reports.

So the way the provider gets away around that is to, as I mentioned earlier, you can save to your computer a PDF version of the report. So that would be the wise thing for any provider using our service that wants to have a lock on that record, at least historically. Like, you can’t obviously guarantee that going forward, because again the patient can delete it anytime, but at least that they go in and they see, there is an entry or maybe no entry for that patient in the scenario I described a moment ago, they can create a PDF report, save that to their computer, attach it to the EMR, if they have EMRs. That would be the way at least of maintaining some record which they have control of going forward.

Dr. Mohammad Al-Ubaydli: [Audio Disturbance - 00:26:05 - 00:26:25]

Fred Eberlein: You know, Mo, I am sorry, you are breaking up there. I didn’t hear what you are saying. Obviously, this is a Skype connection. So –

Dr. Mohammad Al-Ubaydli: [Audio Disturbance - 00:26:35 – 00:26:41]. Stay on the line, I will call back with a 00:26:46 in one second.

Fred Eberlein: Do you want to do that, you can just put it into the message box on Skype, the chat, I should say.

Dr. Mohammad Al-Ubaydli: Oh, yes. Okay. What did you learn from watching your customers?

Fred Eberlein: Okay, what did we learn from watching our customers? Well, we’ve learned that we can never make service too simple and that we could do more in that respect. We have also learned, and I don’t want to sound negative, because this is a generalization, but there is not a tendency for people to read. So again, that drives us more towards making the service that we offer as simple as possible.

We could do a better job, it’s not just the user’s fault. We could do a better job of making it easier. I think we have done a good job, but there is room for improvement and providing more animation or videos and things like this.

So those are a couple of, I guess, criticisms I would have of ourselves and what we need to do to better address the consumer. The upside is what we have observed is that consumer likes the service. They, as I was saying earlier, benefit from this and it is true as I was saying that there was a feel of control and empowerment, but most often, it’s going back to what our mission is, and that’s probably the best thing to hear is that this helps them to communicate with their doctor. It helps them to make much better use of the time they have and that the doctors like these reports. The doctors enjoy or appreciate getting this accuracy from their patients.

So that’s what we have learned from the patient that the model works, that there is a need for this and not just with themselves, but with the providers, and that it does foster better communication and better treatment. That’s what this is all about. So I think what we have learned in a nutshell is that it works, it has a need, and we just need to work on building that out and making it more relevant and easier to use.

Dr. Mohammad Al-Ubaydli: So what do people worry about when they begin that they should not worry about?

Fred Eberlein: Yeah, that’s a good question. I think, first of all, I can’t really speak with authority about what they worry about, but I do think from comments you get, and it’s very interesting if you look at age groups, but the older the user is, the tendency is the less they seem to understand the working of the Internet.

(00:30:07)

There is, and justifiably always, a concern about privacy of information. But sometimes it’s those same users that will write you an email and say, I forgot my password, but I think it was, and they write the password and the email. Of course, we encourage patients or users never to do that.

So I think some of the worries that the user have in this medium, and this is fortunately, as time goes by, a fewer number of users. Five years ago, amazing number of people, more on the clinical side than on the patient side saying, oh, you know, my patients don’t use the Internet. We rarely hear that anymore, though sometimes it still comes up.

We know this is not true. People have assumed that, oh, those lower income folks can’t afford computers. Well, maybe not, but they buy an iPhone that might be a refurbished iPhone at Wal-Mart. So fact is that as you will know the Internet is here to stay, people are using it increasingly for everything, and becoming comfortable with that.

So there’s not so many worries as before. Again, security is always a concern and people should be cautious, but they should also temper that cautiousness with some pragmatism. One of the points we say is, look, if you are concerned, don’t — just close too much information. We have comments areas, free text areas where patients can write in whatever they want and I think it is a note of caution for everybody to be careful what they write down and I think sometimes we are not cautious enough with that.

I am thinking more about information getting into the hand of an insurer, sadly enough who might deny certain coverage to a patient, because whatever; a family member was suicidal. We’ve heard incidents like this. I think they are prowling. They are immoral, but they happen.

So we have some contradictions here, but these types of worries I think people should have, they don’t show enough or perhaps respect enough and the other ones I say are more on the technology side, which are diminishing over time. So I think we need to refocus our worries in short, I think, more about what we are documenting and what we might saying that could work against us in the future and less so about somebody hacking into the account.

Dr. Mohammad Al-Ubaydli: That’s interesting note. I was speaking to a security expert from the University of Cambridge the other day and he was just pointing that actually, the most likely security risk isn’t the hacker a thousand miles away; it’s your relative who gets access to your password and they have far more interest in your records than a — it’s a very tiny number, but they have more interest in your records than the hacker. So it’s kind of setting up a system so you understand how to maintain your privacy, how to take control of your healthcare.

So this has been really interesting. Is there anything else I should have asked you?

Fred Eberlein: No, but just on this last point of security, because it is an intriguing one. I think it’s absolutely true what you heard and I just know from my experience in business, most of what is hacked or leaks out of an organization occurs internally, very often it’s passive. Something we know in the business world, a salesman who has just been let go, leaving the office with his laptop or her laptop with all their leads and prospects on that. There is a great bunch of information leaking out of the company.

So there is a lot of passive loss of information. We wouldn’t call it hacking, but even malicious things of this nature do happen internally. So I would entirely agree with this assessment, although I can’t say I have done any studies in that area, but it likely is someone close to that patient that can be getting to that information.

(00:34:52)

Now just on that note, by the way, one of the features that we have in our service is the default, the patients can override it, but it’s the automatic logging out. So if your session is inactive for 15 minutes, it will log them off and blank the screen. We imagine in this scenario where our user might be actually making entries from their office and get up to go to the bathroom and forget to log out. But it can also be an important in any setting to have that kind of a feature.

We have implemented some other security features as well within our service. Many websites today will have you register your username as your email address or you have a username you can’t change. In our case, the users can go in and when they do register, it is the email address, they can override that. They can create another username that’s not a working email address, but simply a syntax of an email address, as another level of security.

So I just wanted to add that in. Security is very important to us. We are HIPAA compliant. We are backing up our system daily. We are looking at traffic coming in and out of the servers using intrusion detection and other types of tools to ensure that only the folks that have accounts can get to them.

So far the records have been pretty good in that regard, but you have to stay and be guarded all times from those things. But aside from that, I don’t think there is anything we have missed here. And I thank you very much for your time, Mo.

Dr. Mohammad Al-Ubaydli: Thank you, Fred!

Full transcription provided by Tech-Synergy

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Dr. Mohammad Al-Ubaydli: Welcome to the Patient Know Best podcast. My name is Mohammad and I am delighted to be here today with Dr. David Rearick. 00:08. Dr. David, could you introduce yourself as we begin the podcast.

Dr. David Rearick: Well, good afternoon Mohammad. It’s nice to be with you. For our listening audience, I guess I would start that my background is like yours, a physician, a family physician and practiced in the States for 20-plus years, and then decided that I wanted to move my practice individuals to corporations and practice really the 00:36 population health management. So I went on and got an MBA, and the last 15 years of my career I have spent really on the insurance consulting side of medicine, being medical director in the Southeast for a while and then currently I am medical director to 30 different benefit brokerage firms throughout the United States, and I help their clients which are primarily employers reduce their healthcare costs by improving the health status of their population, of their workforce.

Al-Ubaydli: Okay then, I was really interested basically to notice that you had created a radio show? It’s on www.goodhealth.businessradiox.com. You had quite a few interesting guests. How has it been going?

Rearick: Well, it’s actually going very well. That is a kind of sidelight that has developed out of our work with corporations, and as you said, the show is called ‘Good Health is Good Business’. It’s a show focused on health as a business competitive advantage, and we have had some great, great guests on our show. People that are experts in the area of health and wellness and productivity. We usually highlight a guest every week as well as review of the weekly wellness news, and usually a wellness tip for any committees that are looking for new activities or tips to run their wellness programs. So thank you for asking.

Al-Ubaydli: What kinds of things have people been able to learn from listening to the radio show? What kinds of things have your guests been able to teach?

Rearick: Well, you know every guest that we have on the show, we do ask a single similar question to every guest, and that is, what is your advice, your best advice to drive engagement of the workforce into a health and wellness culture? It’s interesting on how our guests which are experts in their fields all have a variety of different answers, but I think that our listening audience is taking away some excellent ideas on how to get engagement, because if you don’t get engagement by your workforce, no matter how good your programs is, you’re not going to make a difference in the health status of the population.

Al-Ubaydli: The company that begins to work with you on a wellness program, how do they get engagement? What do you advise them?

Rearick: We normally get engaged actually to manage the companies’ health and wealth or benefits. That would include of course their health insurance, their vision, their dental, their disability, maybe their 401 (k). We manage that entire product portfolio for the companies that engage us.

Healthcare is, of course, about 70% of all of that work. It’s the big guerrilla in the room and when they do engage us, we try to incorporate incentives by a variety of characteristics into the actual benefit plan. So we drive the population to be engaged in a wellness program. Let me give you an example of that.

We may set out for a company and say, if your employees want to have health insurance, you require Mr. Employer that it be mandatory that they complete a health risk appraisal. If they undergo biometric testing, which would be a blood drop from their arm, then they would earn a premium differential on what it cost them out of their paycheck every month for their health insurance.

So by doing those types of things we get a very high percentage of the population engaged in a company’s wellness efforts.

Al-Ubaydli: So just be clear, the biometric test that the employer asked the patient to go through, none of those results go to the employer, they just go back to the employee, and just the act of giving that information to the employee is useful to the employee and to the employer?

(00:05:09)

Rearick: Absolutely, yes. There are certainly federal laws under the statute HIPAA that precludes the employer from getting that information that’s referred to as private healthcare information. So we are usually the keeper of those keys as an outside independent consultant, we manage that process, and we are sure that the employer is HIPAA compliant and does not have access to private healthcare information.

However, the employee does have it. They usually get a private independent report, and we would also coordinate with their disease management company, which could be another outside vendor, to help identify from the results of the health risk assessment and the biometric testing which individuals would be the most appropriate to make an outreach to help them control their diabetes, their heart failure, their asthma, their lifestyle risk factors, i.e., obesity, nutritional deficiencies, lack of exercise, and at least contact the member and try to get them engaged in a program that is available and being paid for by the employer. But the employers themselves do not know anything about the person’s private medical history or even who gets an outreach to and invited to join a disease management program.

Al-Ubaydli: Now it was interesting to me when reading your book that the very first part that begins with just explaining to the employer that the improvement in the employee’s health, obviously it’s good for the employer, but it’s also the employer’s responsibility, because the hospital doesn’t care, even the health insurance company does not have any incentives in improving the employee’s health. It’s only the employer that both has the financial wherewithal to make it happen and the incentives to make it happen. Could you talk us through that?

Rearick: Oh, yes. As you know in the United States healthcare system, we primarily have an employer based system unlike most of Europe and other industrialized nations, but approximately 68% of all people that have insurance, get it from their employer. Because the employer is picking up 75% to 80% of the bill for all medical care, it’s really only the employer who is the actual payer who is incentivized to their population healthier.

In our system in the States, we have very much of a fee-per-service type program for medicine. In other words, the more you do the more you get paid, if you are a provider, i.e., a physician or hospital, an ancillary provider. Unfortunately, that has tendency to drive up our cost, and when you are payer, the employer, that’s not a good thing. So the employer is truly incentivized to control unnecessary utilization of healthcare services and the best way to do that is to get their employee population healthy.

Al-Ubaydli: So as the employer begins to do that, what do you advise them as they begin to work with your company and begin using the services?

Rearick: Well, there is one critical area for any employer who wants to be successful in developing a health and wellness culture within their organization. That single most important factor is Chief Executive Officer buy in. The officers of a company must have a vision of health and wellness, if any program like this is going to be successful.

Without the vision and direction set by upper management, it’s very difficult to get middle management on board. It is certainly difficult to get the plant workers on board, the union on board, the wellness committee forum, the budget approved, and so many other things. So I do believe that vision by the CEO is critical and there has to be a desire for management to want to invest in their human capital, if a program like this is going to be successful.

(00:10:09)

Al-Ubaydli: So, as you watch different employers begin to use your services, what you can learn from watching them do so?

Rearick: Well, I think number one, we have sold programs and implemented programs without the CEO’s approval, and we have seen them for alternate sale. We have also seen employers who wanted to simply offer some type of a gift certificate or a $50 incentive to complete a health risk assessment or complete biometrics, and see those programs suffer because the incentive is large enough to change behavior.

We have seen programs that start well, but lose their steam because they do not run regular wellness programming throughout the year, and only do it during the open enrollment, at time when people choose their benefit program. That’s a critical mistake also. You have to have a regular series of wellness activities and challenges throughout the year, if you are going to change the culture.

And the other thing that we have seen, many employers try to do is rely on an external vendor, a wellness company, a disease management company, to try to change the culture of their own organization, which is never really possible. No external organization can change the culture from the outside of any organization. It has to be changed from the inside.

Al-Ubaydli: Basically if the employer doesn’t take it seriously, then the employees aren’t going to take it seriously.

Rearick: That’s very true. Well put.

Al-Ubaydli: Okay. So what do employees worry about that they did actually have to worry about when they begin these kind of programs?

Rearick: Well, I think the employees worry about the privacy issue. They wonder why my employer is doing this. Are they going to use this information against me for termination or maybe to cut back on workers or lay-offs? The employer often times worries about do I have the internal resources currently and staffing to help support a program like this.

And the CFO worries about, is the investment in time and resources going to give me a pay off. So that’s a whole different topic in its own, but certainly the return on investment on a healthy and productive workforce is far more than the savings that you get in direct medical costs. The real advantage is in the areas of productivity.

Al-Ubaydli: So that’s employees not usually take time off and 13:14. They are working well because they are fit and — they haven’t gotten health problems slowing them down.

Rearick: That’s right. If you have a healthy and productive workforce you should see your absenteeism improve, your presenteeism which is people are actually being at work, they are present but they aren’t very productive. For instance, the person who shows up with a bad flu or with a migraine or is depressed, that’s presenteeism. You should see that improve. And in general you should see your workforce actually turn out more work in the same amount of time.

Al-Ubaydli: And then what about the reveres and what should people worry about that they often cannot do?

Rearick: What should — you mean the employees worry about that they normally don’t.

Al-Ubaydli: Yes, and the employers I guess. Is there something that they don’t think of, that you have to remind them of, so that this works well for everyone?

Rearick: Well, I think you do have to convince them that the real advantages of a healthy and productive workforce is not in the reduction of their healthcare premiums and the reduction in direct medical cost, but in the improvement in productivity.

So that’s an area that does need to be managed and measured. I think employees often times don’t realize what the true benefits of health are. And that the real beneficiary of health is the person who has it, not necessarily the employer.

(00:14:54)

That point is often times, I think, lost on the employee when a program like this is being put into an organization, financed by the organization, paid for by the organization. The real beneficiary is really the member who engages.

Al-Ubaydli: So what kind of tools are useful in setting this type of — obviously I am most interested as to 15:19 tools, but what kind of information management tools help this kind of program be delivered to its best?

Rearick: That’s a great question, because if you don’t have the right tools and you don’t have the right metrics to measure, you don’t manage the process. We are a big fan of what gets measured, gets managed; and what doesn’t get measured, doesn’t get managed well.

So you need data, and the data that you really need to start with is the aggregate data from your health assessment, which is basically normally an online profile that every member completes. That allows an aggregate employer report to Board of Personal Health Care Information that basically outlines what the cost drivers are within the population. What are the issues that the population has? What percentage of smokers, what percentage of people are sedentary? Who has uncontrolled blood pressure, elevating cholesterol? The numbers.

So now you know what your issues are and you can track that. We frequently track the average number of risk factors within a population and the average risk factors per member. Most members have an average risk factor of anywhere between 3 and 4 risk factors per member.

We also track the financial measurements of the per member per month financial cost for medical and pharmacy claims. We also look at the utilization statistics for 1000 members for the major chronic diseases within the population as well as the in-patient days or hospital days for each major chronic disease and the ER visitation rate for each chronic disease.

We also look at the quality of care that the population is receiving. Therefore, if we are looking at the diabetic population, we will be tracking the number of diabetics to get a Hemoglobin A-1c on an annual basis. The percentage of those that are getting their annual eye exam, percentage that are on an ACE or an ARB medication to prevent renal disease, uncontrolled blood pressure.

We will look at the number of diabetics that are admitted. How long their length of stay is? All variety of metrics for the various diseases that are driving the employer’s cost structure.

So that type of report which we produce quarterly and then within annual CFO scorecard gives the employer a real view of what’s going on with its population.

Al-Ubaydli: That’s pretty interesting. And how can they start using that program? Which website should they visit?

Rearick: The best site to go to is our company website which is — our firm is called Strategic Benefit Solutions and our website is sbs-benefits.com, or if they decide to visit our radio show and listen to some of the podcasts on productivity and health, they can go to www.healthybusinessradio.com.

Al-Ubaydli: It’s pretty interesting. I am just adding those links to the podcast. Is there anything else you would like me to have asked you that people need to know about?

Rearick: No. Just pray across in America that we get healthcare reform completed this year and there is something worthwhile.

Al-Ubaydli: We have a whole team who wants to get this done, it would be fine. Okay. Well thanks very much David.

Rearick: You are welcome. Thank you very much Mohammad.

Full transcription provided by Tech-Synergy

Maria Sipka (twitter feed) is the CEO and founder of Linqia, a company whose investors include Esther Dyson, who is on our advisory board. The Linqia marketplace helps monetize social networks by attracting valuable partners. I interviewed her because she can teach clinical teams a lot about creating and managing online communities for and with patients.

Download to the interview or read the full transcript below.

Dr. Mohammad Al-Ubaydli: Welcome to the “Patients Know Best” podcast. I’m very lucky to be joined here today by Maria Sipka.

Maria, tell us a bit about your background, because it was very interesting for me to learn about the work you’ve been doing.

Maria Sipka: Well, thank you first, and thank for inviting me to share some of the knowledge and experiences that I’ve had over many years. My background in the last five years has been in online communities, building online communities and helping brands and companies and individuals leverage community tools to achieve their objectives.

Prior to that I spent ten years in the offline world. The online world is, I guess, fairly new to me; but in the first ten years of my career I focused on helping clients acquire relationships, either with customers or members, and also on how they were able to keep those customers and members.

So currently I’m the CEO and Founder of an online marketplace for online communities called Linqia, and we are passionate about driving value into these communities and making sure that communities thrive and grow and serve the needs of so many people around the world.

Dr. Mohammad Al-Ubaydli: Well, thank you, Maria. I mean, the reason I wanted to talk to you is exactly those communities. So as healthcare gets more complicated and as patients deal with more and more clinicians, and clinicians deal with more and more patients, as well, the community becomes really important as a new tool that helps people work together, and online it’s really where the community building is beginning to thrive. So walk us through some of the things that … some of the new technologies that are available when you’re working with communities online.

Maria Sipka: Well, the actual definition of “communities” can be interpreted as many ways. People know them as clubs, as groups, as forums, chat rooms, social networks. What it really boils down to, any number of people, whether it’s two people or millions of people, that come together to form a gathering for a specific topic, interest or need. We see them as a fairly flat structure or a flat system. Control doesn’t work terribly well within a community environment, especially in the online-community environment, because people can join communities quickly and they can leave communities quickly.

So what’s extremely exciting with online communities today is that everybody is equal: they can participate, they can raise questions, they can contribute to existing topics and spark discussions around interests that prior may have been extremely challenging due to geographic, economic or even language barriers.

Dr. Mohammad Al-Ubaydli: But the fact that people work together as a team rather than like the centralized, hierarchical previous approach is a bit of a switch for clinicians. So previously the doctor or the nurse would speak, and the patients would kind of obey the orders; but they’re a lot more participatory right now.

We have a presentation from you that we’re gonna put on the podcast website, so you can look at it; but could you walk us through that, because it’s really about how do you actually make this happen?

Maria Sipka: Most definitely, and you hit on a very important point there and that is the patients. With the emergence of social media or what we term as Web 2.0, what’s happened is that it’s enabled anybody in the world to have a voice, and what we’ve seen is that the patients are actually in the driving seat today. They have the voice; other patients are listening to each other. And so it’s one of the challenges and opportunities that’s presented itself is the possibility for all of the other key stakeholders to participate in that experience. We’re talking the clinicians, the doctors, the pharmaceutical companies — I mean, anybody, the carers — anybody that has an interest together, it’s made possible today with social media.

And so what’s really important and the presentation that we’re going to go through is specifically in the area of community-building and how communities play a role within your relationship ecosystem. I like to use the word “ecosystem”, because it also fosters that concept of a flat, non-hierarchical structure where one element impacts the other, and so if you put too much pressure within one element or there’s too much control, you run the risk of that ecosystem breaking down. And so with online and with social media and with communities, it almost self-regulates itself.

(00:05:13)

And so what I’d like to do is just go through the whole notion of community-building. This presentation is very much for beginners; so if you’ve already well advanced and you’ve created your community and attracted members and it’s thriving, I’m confident you will be able to pick up some insight. But this presentation is very much for the newbies or the beginners that are like, “Where do we start? How do we enter this space of social media, specifically within community-building? How do we build a community, or how do we join an existing community, and how do we participate? you know, how do these communities play a role of in our relationship ecosystem?”

So I’d like to start out firstly by making a very powerful statement, and it’s one of the biggest misconceptions amongst traditional marketers or advertising agencies or anybody that’s been in a position of influence, and that is that whilst communities are an extremely powerful distribution channel, a place where you can certainly influence the members of the community, it’s very important to note that communities are rarely new to direct selling.

We’ve often dealt with a number of brands and individuals to say, “I want to create a community so I can sell more, or I can get people to fill out surveys” or just focused on their end objective, which is extremely important; but understanding that a community is an ecosystem, the last thing you want to do is waltz into this community or create a community and start selling something, because you’ll frighten people away. You know, people want to … people really that join a community or create a community want to feel like they’re starting a shared experience where it’s a trusted place, there’s transparency and that people are open to really discuss what’s important to them and share what’s important to them. So –

Dr. Mohammad Al-Ubaydli: Sorry, may I?

Maria Sipka: Certainly.

Dr. Mohammad Al-Ubaydli: I was just going to add that for clinicians, this is a really important point to make, because they don’t want to participate in a commercial environment where they feel like they’re trying to sell their clinic or they’re trying to show for more business.

The participatory approach or relationship ecosystem is really about different people helping each other out, and that may well lead to more patients coming to your clinic; but you’re not there to advertise your clinic and not there in direct selling.

Maria Sipka: And communities work the other way around. The more you add value, the more information that you share, the more you enable people to connect and really develop their relationships, the likely result of that will be some kind of a sale or commercial outcome; but that really comes in 99% of cases on the tail end. You do a great job of the first bit, you know, and then the rest will fall together, because at the end communities for clinicians or for businesses do need to clearly demonstrate some kind of ROI, some kind of Return on Investment.

I’m not talking about cash, but there does need to be some set objectives and you need to monitor and really determine whether you’re meeting those objectives, because if you’re going to be investing time into building a community or joining an existing community and sharing, then there does need to be some benefit for you; but within a community, we like to see it as a relationship conduit.

So it’s a place where you can establish and deepen relationships, and it’s very much an authentic experience, unlike traditional advertising or focus groups or … you know, okay, that’s still taking place today; but you’ll find the most successful communities on the Internet are those that really foster relationships and people feel like they can share.

So in terms of community-building, we’ve identified — well, actually we didn’t identify this, a site called Awareness — they do a lot of research in this space — identified eight different types of communities, and as a clinician you could fall into any one of these eight different community types.

So the first different community type is a corporate-voice community. A corporate-voice community facilitates a dialog with your audience in a personalized, humanized voice that builds trust through ongoing conversations. So it’s very much intended to dialog and converse with whoever it is: it could be your patients, it could be doctors, or it could be carers, or it could even be other clinicians, okay? So a corporate-voice community is where you can participate in a dialog.

(00:10:14)

The second type of community is a user-generated content or micro-site campaign community. That’s where you can build demand for your products and services. It could be through a contest, it could be through a survey, it could be through some other viral marketing program. This is typically for brands that want to sell a product or service, not necessarily do research. It encourages interaction amongst the users through the content that they submit, and they vote on the submissions of others. So it’s a way of being able to see that community with some kind of, we call it, a content or an asset and enable the community members to interact with that by the voting or sharing, and it gives you direct, immediate feedback. But what’s absolutely key in a user-generated content community is that 98% of the content should be generated by the users. Your role is to spark or inspire the users to actually create that content.

The third type of community is an enthusiast community. An enthusiast community typically increases brand awareness by stimulating a common passion in the audience while encouraging members to share thoughts and ideas. So if your key stakeholders are particularly enthusiastic or passionate around a specific topic, then you can create a space where people can — those key stakeholders can start to share their ideas and thoughts; so it’s bringing people closer together and increasing the conversations on a much more frequent basis.

The fourth type of community is an association or a subscribers community. So the purpose is to increase like customer satisfaction through an exclusive velvet rope-type community, so they’re typically closed communities or not even visible to customers, association members or subscribers. So this is particularly relevant when the key stakeholders that you’re looking to create a community around are extremely pressed for time. They have many other choices where to participate, and you want to offer something very unique and compelling, and one of the reasons why that physician or that clinician would join your community is because you’re offering something exclusive. It doesn’t necessarily mean exclusive in terms the film or the music industry. You know, exclusive might be that you have access to do content or something that people would want to join and participate in a discussion around.

The fifth type of community is a loyalty community, and the purpose of a loyalty community is to enhance customer or member loyalty by communicating and rewarding these top key stakeholders. So if you have people within your community and they are consistently contributing and really adding value to your cause or your topic of interest, then you can also create a community to be able to reward these people and give them some form of status. It could be that they become moderators in your community. It could be that they get to attend special events. You somehow find out what are their hot buttons and provide them with means to motivate them to participate, because what’s really important when you create a community is you don’t want that community purely to sit on your shoulders. If you can distribute the moderation and the participation amongst the community, then it becomes a very thriving opportunity for people to share and it’s not totally dependent on you or just a few people. So loyalty communities are a great way to be able to identify those champions and keep them engaged.

The seventh type of community is a peer-support community, and a peer-support community is sort of touching on what I’ve just mentioned, and that is reducing customer service and support costs by providing a vehicle for community members to solve others’ problems. So if you create a community for patients and they start to discuss a specific topic, you’ll find that the community will start to help each other. Again, you don’t want the one-to-many approach; you want the many-to-many, where everybody can help each other, and they are some of the most thriving and valuable communities that are out there, because you’re actually enabling, people are still compelled and inspired and motivated to help others, and then those that are being helped can also find ways to overcome their challenges.

(00:15:07)

And then the last type of community is an event community. So an event community builds and maintains buzz leading up to and following an event. So if you are currently organizing gatherings amongst a few or many people, then you can actually create a community that keeps those conversations ongoing, and as well as generates enthusiasm leading up to that gathering. What we find with event communities is that often a lot is shared and discussed when people physically get together. It might be a presentation, or people might be referencing books that they’ve read or people that they’ve come across. Well, community is a great way as a repository to then — you know, whoever shared something of value, they can go back to that community and actually upload it into that group and say, “Hey, everyone, I’ve just shared this presentation that we went through” or “Here are some of the outcomes of the survey that we did” or “Here’s some insights from the experience that we had”.

So they’re the eight different types of communities that you’ll typically see throughout the Internet, and I would say that specifically what would be related to you is communities around perhaps the association and subscribers, the peer-support communities and the event communities would be the three communities that would be most relevant to those that are listening to this podcast.

Is there any comment that you wanted to make on that, Mohammad?

Dr. Mohammad Al-Ubaydli: Yeah, I was going to say that’s a really nice classification, and I think the three you picked out are the ones that I was thinking of, as well. The new one that I’m also noticing is six, the innovation community, in that we’re seeing now patients who are both, you know, giving advice on new medications, but also contributing to the production of those new medications. So you’re seeing patients who are also creating groups, that are fundraising, that are allocating resources and then stepping forward when the clinical trials are around. So they’re part of the process of creating that new innovation that cures the disease itself; but, yeah, the three that you’ve picked out are really particularly interesting to clinicians, I believe.

Maria Sipka: Well, thank you for those observations; very relevant. And what we’ll move on to in terms of the next slide is to give you a little bit of a pulse-check on what’s happening within communities around the community space around the world. All of you will no doubt belong to at least one social-network channel. It could be you could be a member of Facebook, you might even be a fan on MySpace of a particular band, or you may be using Twitter by listening or participating by sharing. There are so many different channels out there, and I have no doubt that you belong to at least one of them.

Specifically within communities in social networks, today we have over 2,000 social networks. Five to ten years ago or five to seven years ago, there were only a few, and that’s really where the masses congregated; but, today, there’s been an emergence of many, many, many social networks, and what we’re seeing is the emergence of niche social networks around nurses and, even if you have a look at a nurse community, it could be in specific languages or specific fields. So we are finding that people no longer want to be part of a generalistic community; they will be to maintain their friendships or their professional contacts who are LinkedIn. But for those that are really wanting a valuable experience, they will choose to either create or join a social network or a community of purpose that’s highly relevant to their field or their passion, or their hobby.

We’re finding that within these social networks, we have around about 160 million communities. Most of these communities, 95% at least, have been created by the members themselves; so they’re volunteer-led. One important point I should note is that not all 160 million-plus communities are active or alive. We estimate that only 5% of them are actually interesting and would complete our assignment.

So in the social-networking space we have around about 950 million members. They currently belong to a social network, and keep in mind that there are roughly 1.6 billion people who are online today. Of the 6 billion that are in the planet, we have 1.6 that are currently online, of which 950 million belong to a social network, and at least 350 million people belong to some kind of community.

(00:20:06)

They say that the average number is around about five; you know, typically a person that belongs to a community and gets what a community is about and somehow receives some form of value, whether they are part of a tech community or something around an iPod or even a patient group, they will then join at least five other groups that match their interests and needs.

Dr. Mohammad Al-Ubaydli: So just to come back to the comment that the vast majority of the active communities that are user-led, so a clinical team is much more likely to join an existing patient-led community than they are to create their own community for such patients.

Maria Sipka: Exactly, exactly. and we’ve found that professional communities that are created by professionals, like clinicians, companies, brands, those type of communities it’s the other way around: 95% of them are alive, they are thriving in one way or another, simply because they are tied to business, some form of objectives, business objectives. It is very different from a member that belongs to Facebook that is passionate about golf that creates a golfing group. That community has a 95% chance they could be (glitch) a community that’s created by a professional has a 95% chance of having (glitch), has all the … whether it’s (glitch) come forward and one of the acts we got (glitch) we got, because you (glitch) their patients, your blood, to keep it going.

So in terms of what we spoke about before, how we started different presentations in that community, shouldn’t be seen as a sales channel, but rather a relationship conduit. Another way to see community is (glitch) way to teach with your kids, because in communities patients are live. If you take a look at what you’ve traditionally done before, what you’ve been exposed to before is that you had somebody, an individual or a company or an organization with an objective, whether it’s, say, to promote an event, create a loyalty program, promote some kind of new information about a service or product or to do a survey or to create a focus group.

Traditionally, how that process has happened is via some form of a communication channel. It could have been via an email database; a mailing list, whether it be sending letters or email addresses; it could have be by an advertisement or picking up the phone. You know, communication really in the old days, or how we classify as Web 1.0, was quite rigid, you know, and the reality was that all of the people that they were communicating to, whether it be two or three or thousands, all of those relationships were locked in like a database. You know, the people were unable to communicate with each other; so they’d participate in this survey and weren’t able to share their experience around participating in that survey; or if they attended an event, yes, they could talk with one another at the event, but then there was no before or afterwards.

So it was very much a rigid, one-way channel, and what’s happened today is that those databases or those relationship groups have been brought to life, you know, and what we see today is not a one-way channel, but rather a collaborative channel so that you can actually release any type of message or spark any type of conversation, and immediately you can start seeing the results of that through communities and other social-media channels.

And what’s happened is that — and this is what most of us are grappling with — is that the rules have changed. Because of this level of transparency and immediate feedback, suddenly those that are actually releasing that message have had to deal with a completely different set of rules.

One of my favorite cartoons in the presentation is that if you talk to people the way advertising talk to people, they’d punch you in the face. And that’s how severe it is within social networks and communities and sites like Twitter and so on. People just don’t like being manipulated or influenced or sold to. And so what we need to understand is how to operate and play within this whole new ecosystem of social media where suddenly users are the ones that really have a say in this ecosystem.

(00:25:27)

So what I’d like to –

Dr. Mohammad Al-Ubaydli: So, Maria, the — I guess that the traditional way that if you’re a hospital, for example, you would have the Communication Team releasing press releases and they’re the ones also talking to … they’re the kind of public-facing Communication Team.

Now they can’t do that; now it’s gonna be the clinicians who are communicating with patients in a public forum through a community website. They’re the ones that are actually the Communication Team, and it’s more distributed — it can’t be centralized — and they’re talking the way they normally talk to patients; they haven’t had the professional advertising way of talking.

Maria Sipka: Exactly, and it goes even a step further than that. Clinicians are the closest people that can relate to the masses. You know, the masses don’t want to hear from the Marketing or PR executive; of course the Marketing and PR executive has a very important role to play in all of this, but we’re finding with any type of company or brand or any user group, the people want to talk to people that they can relate to.

And so, you know, the step further that it goes to now is that the clinicians are actually reaching out to the influencers within this social-media ecosystem, and those influencers could be prominent people that have a lot of … they could be patients; but those specific patients have influence over many other people. They could be bloggers, you know, and those bloggers could be the patients that have decided to share their experience by blogs and by Twitter and they’re the mass and have a huge following. The clinicians are reaching out and identifying these influential people — we call them influencers — and then sometimes those people are the ones that then deliver that message.

So it’s almost like, you know, we’ve got a game of Chinese Whispers here: you’ve got the Marketing Department that then communicate with the clinicians, and the clinicians communicate with the influencers, and the influencers are the ones that communicate with the members. And it’s fascinating to see how that message is transformed, and it evolves when the Marketing people finally get around to monitoring, “Okay, well what’s actually being said here?” that’s where the greatest insights and innovation come from, because that’s where you truly listen and understand what are the needs and what are the interests of these key stakeholders that we’ve traditionally been talking to, not talking with.

Dr. Mohammad Al-Ubaydli: So the Marketing group, it’s more that their role is training or sort of cascading expertise, because there still are some risks of when you’re talking online with patients, because everything you’re saying is archived, is stored, and if you say something wrong then it’s available for people to talk about. So do you switch to a training role as you go to thinking about the stakeholders and what they would want?

Maria Sipka: Yeah, well, what we’re finding is that executives such as Marketing, Communication, PR, they’re responsible for identifying the tools that are out there; they’re responsible for monitoring what’s being said; they’re responsible for somehow digesting that information and gathering various different stakeholders — whether it be community members, whether it be clinicians — and sparking a conversation as to, “Okay, how do we respond to this? What does this mean?”

So they’re also involved in understanding what are the rules and regulations and guidelines that are out there, because specifically within the health industry it’s a minefield. We’re speaking with some of the world’s global pharmaceutical brands, and some of them have done nothing because they’re just so scared to take that step and risk being fined or put into the spotlight as having broken the rules. And so it’s very important that the backroom or the engine behind is feeding the right type of frameworks and guidelines and tools in order for that community to really thrive. Does that make sense?

Dr. Mohammad Al-Ubaydli: It does.

(00:29:58)

Maria Sipka: So one of the approaches that I like to take when going through some of the basics of community-building is that we start off with taking off our professional hats. So if you are a marketeer or you are in PR — okay, most of you are clinicians — or whether you’re in Market Research, just take that hat off for a moment and put yourself into the shoes of your key stakeholders. So picture the type of people that you would like to be conversing with that you would either like to join a community with those people or create some kind of a community.

We’re specifically going to focus here on community-building, and we’re going to go through a journey to understand the role of online communities within your relationship ecosystems; and how the relationship ecosystem operates is, it’s a cycle, okay? And this cycle can actually be applied to different community types that we went through earlier.

With any type of community-building initiative, there’s always … you start off with defining your offering, okay? So what is it that you’re thinking of offering to these key stakeholders that you’re wanting to gather and really questioning is there really a need for this offering, because often we find that, you know, we’re convinced that there needs to … a conversation or a gathering needs to take place around a specific topic. We don’t do anything to validate that, so it’s a very, very important to question is there really a need for what it is that we’d like to offer.

And who are your key stakeholders; you know, how are they currently segmented? I’m not lumping them all into one bucket, you know; there might be four or five different members of your community. Mohammad, you might have more of an insight into, you know, when we think about a community of clinicians, who would be the different participants that you would see that would be engaging within this community?

Dr. Mohammad Al-Ubaydli: So you have, obviously, the clinical team, which the doctors, the nurses, the allied professionals; but also you’ve got the patients, and you’ve got the carers for those patients, and finally there might be some social support, as well. So the people who are preparing the social-care package along with the clinical one.

Maria Sipka: Okay, so you’ve got roughly anywhere between three to five key stakeholders that you’re addressing.

And the next question once you have identified them is, how do they currently behave? You know, this is to gain an insight and understanding of how they could potentially participate within your community, understanding how they can behave. If you’re targeting carers that are around the clock taking care of patients, then is a community really going to be valuable within their day-to-day activities; how are they going to find the time to participate; and what’s going to be relevant and meaningful to them?

To understanding how these key stakeholders currently behave and the relationship that they potentially have with this online medium is important, because then you can plan around that and find touch-points to engage those people to make it a very relevant and meaning experience to them.

So this first stage, or phase one of defining your offering, requires that you research; you speak to these — you identify the key stakeholders, you speak to them; you find out what’s important to them. You might have some ideas as to what you feel is important, validate that with them and create a crystal-clear image of what it is that you’re going to be offering the type of experience.

It’s very similar to if you’re setting up a restaurant, where you can imagine what type of people are going to be visiting your restaurant, what kind of food they’re going to be eating, are they going to be there for two or three hours or just a half an hour. You know, it’s really creating that crystal-clear picture.

The second phase of the community-building process is a very important one, and that is setting your objectives. So once you’ve started to paint a picture of the offering, then ask yourself: what does success look like? You know, in order for this community to be successful, what are the different things that need to happen? Out of our potential key stakeholders, if you’ve identified 50 or 100 or even 1,000 people, then how many of those people would you like to join your community and at what stage? They’re not going to suddenly join from day one; it may take twelve months or even two years to engage those people.

So, understanding how many people are going to be part of your community; then also painting a picture of success around their interactions: are they simply going to be digesting information. If so, how will they respond, you know, and what percentage of people will respond. Typically within communities, most people are what we define lurkers: they will come in, they’ll browse around, but they won’t participate. They will click on articles, which is one success indicator; but they won’t necessarily post new articles or respond to others.

But still there does need to be a healthy level of, say, 5% or 10% of your community that are continually contributing, because otherwise you’ve just created another communication channel that relates to what we call Web 1.0, which is just a blasting tool of information. You know, the aim is to get people to participate.

So, you know, over what period of time? Communities on average, depending on what type of community and how challenging or easy it’s going to be to engage those key stakeholders, can take anywhere between six months to two years to mature. You know, what we’re seeing today is that people will join communities, and they need to see that there’s some level of consistency in order for them to come back and contribute over again, for it to become a part of their life in some way. And so realizing and managing expectations from the outset as to how much time you’re going to give in order for this community to grow is extremely important.

A community that I saw, I witnessed being created last year, was a community called Business Fights Poverty. It was created on NING, which is a free social-networking tool where you can instantly create a community, and now this community has over 5,000 members. It’s deeply ingrained within the community leader’s day-to-day activities; however, he’s not the only one that’s contributing in this community. Lots of 5,000 members are not certainly contributing on a regular basis.

If you have a look at this community and see the activity stream, you have a very healthy level of community members that are participating on an ongoing basis. So he was able to achieve his objective within 12 months in a very proactive way, where he integrated this community into his day-to-day communication with his various different stakeholders that he identified.

Thirdly, you know, how are your goals, how are your community objective tied to your business goals? We spoke earlier about Return on Investment. In order for you to justify spending time in this community and potentially even gathering more resources, which could mean some level of cost, then how are they tied to your business goals? If it’s around research? Then, what type of research looks successful to you? Is it based on the number of people that participate in that research; or if it’s about innovation, then how have you been able to measure the activity that relates to new innovative ideas? And so clearly being aware of what your business goals are, they need to be aligned with the objectives of your community; they go hand-in-hand.

And finally, how and when will you measure success? Many of the tools that are out there enable you to measure activity on a daily basis, okay? So you can measure, you know, how many members belong to that community; you can measure how many people are clicking on specific posts or topics that you’ve posted; you can measure how many are replying to posts. So the average community platforms and tools that are out there will enable you to measure.

You can do a little bit of a pulse-check on a regular basis if you want a highly active community; otherwise, we recommend that you measure the success at least on a monthly basis and then determine what do you need to be doing more of and what do you need to be doing less of, and then implementing those changes and again monitoring that the following month to see what impacts change or not.

One example of measuring success that we’ve implemented within a community that we launched is that we find that when we post topics within our community — that could be a new job, or it could be an event, or it could be a question that a member has posted — we will then promote that through Twitter.

So we will say, “Hey, does anybody have any answers to these questions?” or “Is anybody interested in this job?” And we find that that increases our number of traffic. We will have 40 to 50 people visit our community every time that we’ve broadcasted something of interest via the Twitter channel, depending on how many followers we have.

So there are different ways that you can adjust how you go about doing things, and then just do more of that once you find what works. As they say, you can’t manage what you don’t measure. So measurement is absolutely key within this process.

The third phase of the community-building process is developing your community plan. So it’s sitting down with the people that are going to be important within this community. They could be any one of your key stakeholders, they could be a patient, a carer, a physician and a number of clinicians. It’s important to gather as many people as possible, because whoever gathers at this stage, they’re your early supporters and they can play a key role within your community.

As part of the community planning process, there are a number of different areas that you need to address; but the most important one is, do you have a budget to create your community? and what I mean by “budget” is not necessarily in dollar values, but it could be how much time you’re going to invest. Time is as good as money, and so what type of budget can you realistically contribute towards your community-building initiatives; or if you decide to join a number of communities, how much time and money would you allocate towards that.

Once you’ve identified your budget, then identifying what type of resources you’re going to need to manage this community; and resources fall into two categories: you have internal resources, so your internal resources could be yourself and your colleagues and potentially even what we’re seeing is engaging the Legal Department to make sure that we’re abiding by the latest rules and regulations that are out there; it could be touching base with your Marketing or PR or Communication. And so what type of resources are going to be necessary; and what does that mean in terms of their time and what action items or responsibilities they may have either as a one-off or on an ongoing basis.

And then the second bucket is the external people. External people are absolutely key within the community-planning process. External people could be potential patients that would like to moderate a forum or can moderate reviews; they’re the people that evangelize and really provide that level of support to the members that are going to be joining your community.

We’ve often also seen that people that create communities engage external partners and suppliers. So anybody that you have a relationship with, how can you engage them in this community and give them some kind of a role and manage them on an ongoing basis. When I say “manage”, it’s more like really inspire them and motivate them to contribute.

The third area — and we’ve briefly touched on it before — is the technology aspect. Will you be building this community, or will you be using an existing technology? I wouldn’t recommend building at all unless a company or organization that has extremely deep pockets, which not many companies do today. Why reinvent something that’s already been created? There are over 120 different providers of community platforms and technologies. Some of them are completely free, like NING. I’ve seen even some companies create their communities in groups within existing social networks where there already exists thousands, if not millions, of their potential key stakeholders.

So I’ve seen on business communities formed within LinkedIn, within Zing. You could create a patient group or community within patient-related or health-related social networks. So this is a very key question, and often we’ve found that those that invest heavily into the technology, unless there is a strategic reason why it just has to be that way, you really should put 95% of your focus into actually creating the community experience, because unfortunately we’ve seen many companies spend literally millions of dollars on creating their communities, and by the time they’re ready to launch the community, they’ve run out of budget. Then 12 months to two years later, they’ve had the headaches to deal with, and they haven’t even got their community off the ground. So you really need to think twice about how you’re going to draw about your image, and I would highly recommend that you use an existing platform and one that’s free to start with.

The next element –

Dr. Mohammad Al-Ubaydli: Can I just, just to repeat that –

Maria Sipka: Yes?

Dr. Mohammad Al-Ubaydli: – the whole aim is if you do have millions of dollars, you should really spend it on the connections that you have who build the strategic content for the community, as opposed to developing software or building your own platform.

Maria Sipka: Exactly, exactly.

Dr. Mohammad Al-Ubaydli: So we’re coming to the kind of ingredients of the community, you’re kind of laying them out; so can you just repeat those for us? It’s on the last slide, again, starting from the transparency.

Maria Sipka: Yeah, so we’re talking about the cycle to create communities and the first –

Dr. Mohammad Al-Ubaydli: Yeah. So go ahead, I’m sorry.

Maria Sipka: Yeah, and so the first phase is defining your offering; so being very clear about what it is that you’re going to offer to this community that you’re going to create.

The second step is setting your objectives, and how are they aligned with your business objectives?

The third stage is the community-planning phase; so, creating a plan. If you don’t have your own plan, you become a part of someone else’s. So really putting the energy and effort into the planning. And then there’s three other phases that we’ll go through. So I can run through those a lot more quicker because I know we’re running out of time here.

Dr. Mohammad Al-Ubaydli: Uh-huh.

Maria Sipka: Okay?

Dr. Mohammad Al=-Ubaydli: Yeah, go ahead; I’m sorry (laughing).

Maria Sipka: So just to finalize on this third phase of the community plan, where will you gather content? As with traditional media, content is king; it’s the substance that sparks and generates conversations.

So if you’ve created a community around a specific topic, then being able to feed that community, continually with fresh, engaging, compelling content is absolutely key.

And then the fantastic thing about social media, a benefit about social media, is a lot of this content already exists on the Internet. You can actually go to YouTube, you can go to Flickr to get photographs, you can go to SlideShare to get slide presentations, and you can see feed a lot of this content into your community without you having to recreate it from scratch. Of course, you can also use your community to feed with your own content; so if you’ve created a research paper or you’ve written a blog article, then your community is the place where you can feed this and spark conversations.

And finally addressing is there any potential to draw sponsors to your community? If you were to create this community and the more innovation focus there is and you’re able to acquire a gathering of people, then who would be interested in sponsoring this community? And sponsorship may not necessarily be in cash, it may be in kind: it could be offering an event venue, or it could be offering exclusive content; it could be the opportunity to drive more members into your community. So really think about sponsorship and what type of value you could provide and they could provide to you.

The fourth phase of community-building is the acquisition and uptake. So this is the stage where you go out and engage these key stakeholders that you identified earlier, understanding how they’re segmented will enable you to, number one, identify where it is that they currently hang out, okay? Sometimes you might need to go and approach these people offline through a telephone call, at an event; or they may already exist within existing groups online, or they could be a Twitter following. These people could already exist, and tailoring and customizing an approach on how to go and identify where these people hang out and how to reach them is something that needs to be defined before you actually take that action.

And when you identify these people and you reach out to them, understanding what are the different carrots you’re going to offer: what’s going to compel those to either invite their members or themselves to actually come and join your community or group? You need to give them a good reason; you don’t just say, “Hey, we’ve created a community around X, come and join”; “Hey, we’ve created a community around X, and this is the value that you’re going to find if you come and join us.” So part of the acquisition and uptake stage is making sure that you’re very focused in who you’re going after; that those people are highly targeted; and that you’re offering an authentic experience for them to join.

The fifth phase of the community-building process is the result and pulse-check phase, which we went over earlier. So this is where you’re really establishing and generating some kind of return on investment of money or time. So when is it that you know that you’ve achieved success? If you’re monitoring on a daily or monthly basis, you’ll quickly determine whether you’re generating success or not.

How does your community fit into the life of your key stakeholders? You preempted it in the first phase, but are you really playing a role within their life somehow? If these people are returning and spending 5, 10, 20 minutes within your community, then you’re a part of their life; so understanding how you are a part of your life is important. It gives you an opportunity to then create some kind of a formalized referral if membership grows is one of your objectives and you’d like to attract some more people into your community.

If you’re a part of your members’ lives, then there’s a high chance that they will invite others. So why not formalize that process of invitation, either through tools or through incentives or simply just asking, “Hey, do you know anybody else that would like to join this community?”

If you’re creating a larger community, then — and this is something you need to check with IT or your Communication Department — is how does your community integrate within your existing customer relationship-management system. And at the end of the day, the results and pulse-check, the proof is in the numbers. So make sure that whatever tool that you do use, you’re able to track the success.

The final stage is retention. So once you’ve attracted all of these people, you’re keeping them engaged, you’re seeing the success factor is there; then if you’re in it for the long haul, how you’re going to retain your members’ interest. How will you keep these people engaged and deepen those relationships? Will you offer some kind of incentives? Will you incentivize evangelists within your communities?

People love to meet offline, so if there’s a possibility that you can create some offline events, then you’ll find that people will develop deeper relationships, they will refer more and they’ll come back to your site more often. So engagement is and retention is a very important consideration, because once you’ve got that final phase figured out and you’re successful in that, you can then start the cycle all over again and perhaps introduce additional offerings and then go through that relationship cycle again.

What’s important to keep in mind when building communities and going through these six phases is that create a checklist and ensure that your community is maintaining high standards. And what we mean by “standards” is that we’ve found the most successful communities have a high degree of transparency, engagement amongst many members and not just a few. There’s consistency; so, you know, you say you’re going to communicate once a month, then you communicate that newsletter once a month. If somebody posts a topic, then you respond to them within 24 hours. Consistency is something that’s very rewarding for members.

The ability for the members to be able to collaborate amongst one another, celebration is key. so if you’ve achieved something successful within your community, then celebrate that success; promote it through a newsletter; feature it on the homepage; create a discussion; celebrate members and the various different activities.

And the last two points are simplicity: keep it very simple. There’s nothing worse than joining a community that has too many bells or whistles. Start with a very simplistic approach, offer less, find out what it is that the members are looking for and then start to test that out and add more and more as time goes by.

And then finally, measurement: the ability for you to measure the contribution from yourself, as well as the members, that enables you to really benefit from this ecosystem that you’ve created or the community that you’ve created.

Dr. Mohammad Al-Ubaydli: Maria, I really appreciate this, partly because for clinicians they’re not really sure how to communicate with patients online, and partly because no one’s really sure. It’s kind of a new medium, and so I really appreciate the expertise and experience that you’ve brought. It really kind of breaks it down for everyone involved. Thank you.

Maria Sipka: Thank you.

Total Duration: 55 Minutes

Full transcription provided by Tech-Synergy.

For his PhD, Paul travelled the UK testing patients with rare forms of ALS/MND, specifically the genetically inherited familial form of the disease, and progressive muscular atrophy (PMA), which affects only the lower motor neurones. As an adjunct to his main project Paul also carried out the UK’s largest survey of depression and anxiety in MND from a 12-month consecutive sample from King’s College Hospital and collaborated with Dr Martin Turner on a neuroimaging project using PET. He completed his PhD thesis in three years and passed his viva with no corrections; a rare achievement.

During the three years of his PhD he became heavily involved in supporting the Motor Neurone Disease Association; helping to raise £30,000 of donations, writing information sheets, training healthcare professionals, and giving talks to local branches. He has spoken at a number of national and international conferences, and has twice won the British Neuropsychiatry Association prize for best speaker. More recently, Paul was employed by the Parkinson’s Disease Society under Professor Richard Brown on a three year project to investigate depression in Parkinson’s disease.

Paul joined the PatientsLikeMe team as a consultant in 2006 as a moderator in the forum, drawing on his experience at the BUILD forum. Working remotely from London the role quickly expanded to include curation of the treatment and symptom databases, carrying out scientific research, and designing new communities. As the company has grown, the R&D team has grown with it, to include 5 PhDs and 2 RNs working full-time on improving patient outcomes, the only team of its kind in the world.

The son of an IT marketing consultant, Paul has always been at one with technology and interested in communicating ideas. He was the webmaster at the BUILD (Building User Involvement in MND) project, the UK’s largest forum for people with ALS/MND, for five years. He also created the research volunteer database “MindSearch” at the Institute of Psychiatry. Paul has consulted for UK GRAD, an organisation involved in teaching transferable skills to PhD students, and was founder and editor-in-chief of a web based magazine for PhD students in the UK.

Paul is happily married with two cats.

Listen to the interview or download the MP3 file

RareShare was co-founded by David Isserman and Eric Steel in early 2008 on the idea that there is a better way to bring together patients, families and healthcare professionals to share knowledge and personal experiences about rare medical disorders.

While rare disorders may seem to impact only a small portion of the population, together they affect over 30 million individuals in the United States and Europe alone.

Due to the comparably low level of occurrences of individual rare disorders, there is often a lack of information and support for patients and their families. Our communities are designed for people to share experiences, explore treatment options and find support among others affected by the same disorders.

David Isserman is an experienced entrepreneur with a passion for building companies. Over the years, David has amassed a broad range of knowledge working in the technology, consumer products, retail, biotech, and public relations industries. Prior to founding RareShare, David founded Isserman Consulting, a successful communications and strategy consultancy that advised early-stage companies. Before that, he was a co-founder of The Selling Block, a company specializing in asset liquidation for businesses, which he sold in 2006. David holds a Bachelor’s in Business from the Indiana University Kelley School of Business and is currently an MBA candidate at Columbia Business School in New York.

Eric Steele’s background centers around the financing and operations of high growth technology firms. Prior to RareShare, Eric founded ForePoint Networks, a wireless internet service provider delivering high-speed connectivity throughout rural Indiana. Eric has extensive experience working with angel and venture investors and has assisted in closing multiple rounds of financing in both management and consulting roles. Eric is actively involved in the community and sits on numerous boards ranging from entrepreneurship to community outreach.

Notes

• 30 Million People – http://rarediseases.info.nih.gov/AboutUs.aspx
• SCLS – http://www.rareshare.org/communities/systemic-capillary-leak-syndrome
• AMN – http://www.rareshare.org/communities/adrenomyeloneuropathy
• Nutra Pharma – http://www.NutraPharma.com

Read the transcript

00:00:00

Dr. Mohammad Al-Ubaydli: Welcome to the Patients Know Best pod cast. My name is Mohammad and today I have with me David Isserman from RareShare. I read about RareShare a few weeks ago on TechCrunch because they noted how far the company had come since its launch and I was really interested about the focus of the founders and in particular the background of David himself, so David thank you very much for joining me here today.

David Isserman: Thank you for having me on.

Dr. Mohammad Al-Ubaydli: And would you like to just give us a little background, tell us who you are and how you got started with RareShare?

David Isserman: Sure. So first of all I appreciate you having me on the pod cast today. It’s nice to be able to talk about RareShare and let people know what’s going on and also answer any questions that maybe outstanding about what we are doing and what we plan to do in the future. So with that being said just to give you a brief background about myself, my name is David Isserman. I am a graduate student at Columbia Business School in New York. I am studying for my MBA and my background is then consulting and entrepreneurship. I, well before joining Columbia Business School in August I was a full time consultant. I worked in strategy for Bio-Tech companies and also for consumer products companies mostly early stage, start up worked out of Boulder Colorado and I basically spent most of my times helping these companies develop products, launch them, communicate with shareholders, investors and do a lot of public relations and so on and so forth and so one of my clients was a company called Nutra Pharma Corporation and they are a small publicly traded company that’s developing a treatment to several different diseases including

00:02:00

multiple sclerosis and a rare disease called adrenomyeloneuropathy which is abbreviated AMN, and while I was working for Nutra Pharma basically I, one of the projects we were working on was a patient educational website and it was, it was designed to help educate the public about AMN and about what Nutra Pharma is doing and what is, what is currently out here for treatments which there are none, so its fairly a short page on that but really talk about diagnosis and anything and everything that you could deal with adrenomyeloneuropathy and once that site, went live, one of the things that we had on there was an e-mail address that people could e-mail in just suggestions on basically improving the site and so on and what ended up happening was I was the recipient of those e-mails and upon launching started receiving e-mails every week from people all over the world asking me if there were other people I knew with this disease and if there is any way to connect with them or to find out more information about what they are doing, that’s working, what’s not working and how they could really just better their lives while living with this disease. So with that I decided to, I started looking into whether or not we should just add a message board to the AMN website and I decided that it probably wasn’t, going to be as useful as creating a new site on my own outside of Nutra Pharma that basically was scalable to every rare disease that was out there, and so that sort of was the inspiration for creating RareShare and that’s, that’s how, that’s how it started.

Dr. Mohammad Al-Ubaydli: Now you have the idea while

00:04:00

Working in the company but you started RareShare completely independently and this is by you and Eric Steele is that correct?

David Isserman: That’s right yeah so Eric Steele is a good friend from under grad and he was interested in working on this as well, and so what we decided was we launched it completely independently from Nutra Pharma although Nutra Pharma provided their blessings to start this and they understood the importance of what we were working on and they offered to help in anyway they could and we really appreciated that and yeah it was started independently, its basically privately funded by us and its continuing to grow and yeah so that’s really, that’s really how it started.

Dr. Mohammad Al-Ubaydli: Now what I find interesting is that even though you were dealing with one rare disease, you were actually getting lots of messages from all over the world because if you look at the whole globe and even though the disease is rare in every population, it still adds up to a lot of people and then you have a statistic on your website that if you add up all of the rare diseases from the USA and Europe we are looking 30 million people?

David Isserman: Yes, so that is there are two things going on there. One is just to talk about the statistics first. The answer is “Yes”. The NIH has a statistics that says there are 30 million people and there are about 1500 of these rare diseases, not including sub types and sub sets of these diseases but that is an astounding number. If you just sit there and think about it between the US and Europe you know it could be one out of every 20 people that you meet has a rare disease and which seems

00:06:00

like a lot of people if you think about it for being a rare disease but what happens is individually these diseases can be broken down into, into their different groups and they individually, they are very small numbers. So it is an amazing thing but one of the reasons that RareShare is working is because we are basically creating this portal for people to say “All right we want to be able to connect with other people, where do we go, what’s out there?” Well why don’t we start at RareShare, and so what’s happening is we are creating this network effect where people are going to RareShare and they are joining their disorder community and it’s, they are posting online on the discussion forms or contributing information, tips for living with these disorders, things they can do and a perfect example that is a community called a disease called “Systemic Capillary Leak Syndrome” and there is a community on RareShare that currently has 15 members. There are about 100 cases worldwide of this disease and out of the 15, we have one of the members is a physician from Mayo clinic who is the leading expert on this disease and the thing about the — what’s happening there is this ultra rare, ultra orphan disease we are actually, we are actually tracking a big portion of those patients who come in, join RareShare and communicate with each other and help each other, support each other, while they have this and they can learn from each other and learn from each other’s experiences and so the network effect for RareShare is very, very important as it is with any social network but we don’t have to have a million people to have our network work. We just have to have two and that’s, what so important about RareShare

00:08:00

And what’s so interesting about it at the same time.

Dr. Mohammad Al-Ubaydli: That’s powerful I mean I remember when I first say your site I hough it was, it’s a long tail of healthcare and that you have these hugely fragmented communities of the patients, but now they could aggregate and you are right it just takes two for this to be useful it doesn’t take a million. So you have already mentioned one example which is that clinicians can go online and there are world expert in very small population of patients and some other patients who do not necessarily have to be next to that patient, and that physician in the Mayo clinic it could be patients from all over the world and they could now access that expert and the expert can now access these patients for the next round of trials, what else do people do with your product, what kinds of things do they do on the RareShare network website?

David Isserman: So there are a lot of options that people have when they join RareShare and just to reiterate, this site is completely free. It’s open to everyone and, and anyone can join and everyone is welcome to join whether it’s a patient, a family member, a friend. A student researching a disease, or a medical professional, whether it’s a physician, or a nurse, or some one else in the field, a researcher that has an interest in the disease, anyone else, anyone and everyone is welcome. So with that being said what could happen when someone joins RareShare. Basically the first thing they have to do is they have to fill out a, they have to fill out an online form that basically is a sign up and I just, I just want to bring this up for one minute only because I want to reiterate also that users remain anonymous and the, there is an area where they…

00:10:00

Where you can enter your name and that’s optional, that’s going to be, you can ignore the “ballot me” section and that’s optional as well, and so basically the name and e-mail just are never shown publicly, never show in your profile it’s only your user name. So people can remain as anonymous as possible and we can appreciate the sensitivity of the, of the members and so that’s why we just want to reiterate that but with that being said what happens is when someone joins RareShare, basically they are able to go on and they can contribute information whether its everything from synonyms to tips with living with the disorder or it could be prognosis information, treatment information, diagnostic testing information any and all that information can be contributed by its membership. So its sort of a Wikipedia style set up although its different because when you go and you submit that information it does go into a moderation to which, which is looked at by hand just to make sure that there are no, there is no spamming on the site and once its approved, it does go through and the changes are noted. The other option that that people have when they join is they can go on and use these discussion forums and the discussion forums are specific to each community. So if you go to the adrenomyeloneuropathy community, that’s going to have a completely different discussion forum than the Systemic Capillary Leak syndrome. So what happens is you can go on and you can post and as, a traditional message board you can post and threads and new threads and reply to old threads and such and that’s really sort of the starting of the foundation of what RareShare has to offer its members. It is really a way to connect, what, there are couple of

00:12:00

additional things that healthcare professionals can do and it doesn’t necessarily have to be healthcare professionals, but if you say run a foundation for a certain disorder and you are a considered an expert on that, one of the things that you can do is you can opt to become the community expert for that particular disorder. So what happens is you basically apply to RareShare and you let them know little bit about your background and why you think that you are knowledgeable enough and capable of performing the duties as a community expert and then what happens is they are basically the person in that community that helps guide other members of that community to additional information whether its, you know they could, whether its certain Pub net articles that are published or whether its clinical trial information, you don’t provide medical advice that’s not really what that’s about, its really about guiding people to get as much knowledge as possible about their condition. So those are some of just, some of the things that you can do with RareShare currently.

Dr. Mohammad Al-Ubaydli: That’s interesting, that it’s a life line. So I guess one of the things you advice people when they begin to use the website is you are not there to give medical advice. Could you give some rare bit of advice that you give people as they beginning to play with the website?

David Isserman: Sure. So one of the things that we tell everybody which probably about half of the people listen to us when we say this but when you join RareShare the first thing you ought to do is you ought to go on to your community and post a discussion forum, whether its just to say hello or whether its, its to introduce yourself if you feel comfortable doing that or if its, if there is some of other questions posted and what we found is that, is that communities that post

00:14:00

Discussion forms attract a lot more attention. Those people that are sort of sitting in the sidelines come out and they, they interact and participate and that’s really where you can gather all of your knowledge is through these discussion forms, I mean certainly there are things that that are going to be added to the site such as tips or additional disorder resources, things like that or treatment options that are currently, currently going through the FDA process, but what’s going to happen is through these discussion forms, you are going to, you are going to get a lot of first hand knowledge and about living with your disorder and you are going to be able to answer these questions, excuse me your questions are answered and so one of the things that we just we strongly encourage people to do is once you join RareShare, post a discussion topic and let people know that you are out there and you want to participate and that’s, that’s really, really important and we do see that we see that with lot of these communities as soon as one person starts posting everybody starts participating and that’s, that’s sort of key.

Dr. Mohammad Al-Ubaydli: Well I stand guilty because, I actually, I read this today and I haven’t posted in discussion forums yet but I shall do so as soon as we I finish this phone call.

David Isserman: Good yeah, good right away.

Dr. Mohammad Al-Ubaydli: I think, but presumably from watching all these discussions, you have learned a ton. Tell us some of the things you saw, you learned from watching people on the site?

David Isserman: Sure. So one of the, I mean one of the things I keep talking about are these personal experiences and personal knowledge about living with these diseases and that may be discounted a little bit if you have a, if you have a disease that’s common, but when there is little research about your disease

00:16:00

its very hard to know what to expect and very hard to know how to cope or to deal with certain symptoms that occur because of this disease and so one of the things that I have seen a lot of on these discussion forms are discussion about coping and how to basically how to deal with these symptoms and what to expect in two years and six months and five years and 40 years. So its really matter of, sharing this personal knowledge and these experiences that people are having and you know you can take it for what its worth and that is you know free information but at the same time you can take it and you can look and you can say okay now I know more of what to expect in six months when you know with this progressive disorder you know I can know what to expect in five years or in ten years or how best to cope with this symptom or that symptom and what people are doing and what’s helping. The other interesting thing that I have seen a little bit of is people are actually you know sort of telling other people that there are certain things that you can do which can help reduce the symptoms of certain diseases whether its, you know nothing, nothing very medically oriented but things like you know walk for 30 minutes a day on a treadmill at a 8% incline helps, helps decrease this symptom, you know that so this you know there are things like that are being talked about online, so its really that issues…

Dr. Mohammad Al-Ubaydli: It’s interesting you know that, just knowing what would happened six months or two years I think we take it for granted today with common diseases because common diseases tend to have some treatments

00:18:00

But you know back in the 19 century few happened in medicine. One is, possibly for the first time doctors were saving more lives than they were killing but then the second thing is which was really powerful is that they began giving true prognosis to people. So they couldn’t treat your illness, they couldn’t cure your disease but they could tell you that this is going to happen over the next five years or your going to have to suffer with this for the next 20 years and that was very powerful we take it for granted today because we have so many treatments and cures but to someone with a rare diseases and orphan disease having that kind of time line especially from other sufferers is very valuable?

David Isserman: Right, right yeah I think that our members feel the same way with that kind of information.

Dr. Mohammad Al-Ubaydli: Let me ask you, yeah go ahead sorry.

David Isserman: I was just going to say one of the other things that that is little bit off topic but it also goes back to few of the points I made earlier and that is people don’t have to join RareShare in order to, in order to see the information that’s on the site and that sort of goes along with our social mission and that is to connect these individuals, but it is more helpful when you join because then you can participate but if you are just sort of interested in sort of being an observer, we do see a lot of people observing. We wish that they would come in and participate but at the same time we respect the that they are observing the discussions and so don’t be afraid to just come to this site and check it out and browse and see what’s out there and the other thing I want to bring up is something that a lot of people are saying and that is that their community is not listed on RareShare. We currently have about 745

00:20:00

Communities and I said before that there are about 1500 rare diseases. So we are sitting at, we are sitting at about half. What’s happened is we originally put up a, about 400 communities and we have since had requests to add additional communities to the site and what happens is when people go and they search for their community and its not listed its says suggests a community and we encourage people to suggest a community. Its usually up within, 24 hours or less and we just, we just there, we just want to make sure that we are adding communities that people want and so that helps us a lot. So if you go under RareShare you don’t see your community listed just suggest that we add it, we’ll add it and that will start the process of attracting additional members who have that disorder and make sure o join because when there is, when there is one member that really, that really creates a snow ball effect for other members and to join and participate and so this [Voice Crossover].

Dr. Mohammad Al-Ubaydli: I can tell you I did try to [Inaudible] the site and I did request and which need to be added but if you are to not join or they just watch what’s going on as part of that larger set of features you have to maintain people’s privacy and so you participate as much as you would like but you are allowed to participate with full anonymity and privacy if that’s what you would like to?

David Isserman: Exactly. Yeah I mean people have the option I mean this is a very sensitive subject that we are dealing with and so we want to take as much as many measures as possible to make people feel comfortable and safe on the site and that’s why we allow people to remain completely anonymous. We also — that’s also why we have this moderation cue because we don’t want; we really don’t want spammers coming on

00:22:00

And sort of ruining communities. So we take, we take away pride in basically allowing people to use the site as much as, or as little as they want and you know again these, make sure to suggest these communities that if you are an observer and you don’t see your community suggest anyway and will get it up there so.

Dr. Mohammad Al-Ubaydli: And then you have already answered the question I was going to ask you which is what do people worry about that they shouldn’t do. I guess then, one is security and privacy and you already on that and then the other one is what happens if they just get spam but you have the moderation there as well?

David Isserman: Yeah.

Dr. Mohammad Al-Ubaydli: What should people worry about they don’t think of?

David Isserman: Well one of the things that I’ve mentioned before besides the, besides being able to be as anonymous as you want is that the site is not backed by a pharmaceutical company. So we do want to make sure that that’s out there and reiterate that point that, so people know that it is privately funded and its just privately funded by the founders not by a third party, and its, its really being built for its members. It says it’s as a social enterprise its, which means that to us it means that we want to fulfill our social mission first and then create a business that’s financially self sustainable and so one of the things that points about brings into is we are going to be looking at ways to become self sustaining, so that we don’t rely on third party donations or anything like that and so we have full control of the site and so we are very, you know again we are very sensitive about the subject and so what we want to

00:24:00

what people know is that you know we are basically in very early stages of deciding how to make that financially sustainable, or sustainable but again its, members first and business second and that’s, that’s really the point of this is more filling profit than it is for profit and so we want to just reiterate those couple of points and again the fact that it is not being backed by a pharmaceutical company that’s being backed by its founders.

Dr. Mohammad Al-Ubaydli: That’s right and is there anything you wish I had asked you?

David Isserman: Well maybe just one thing that I want to bring up and that is the site is the logo at the top of the page says RareShare and underneath it’s says beta and what that really means some people have written in to ask that means you guys are just trialing the site and only going to have it up for a few months and then shut it down, the answer is “No, absolutely not” What we are trying to do here is that we want to reiterate that people, that the people should expect that the site is going to be continued to be improved and developed and beta just sort of is the marker that that says that that is not a finished product. We are for working on several different, several different new features for the site you know such as bringing in articles from Pubnet or bringing clinical trial information, allowing users to create personal journals that could be public or remain private for a family only. We are also looking at ways to collaborate among specific disorder communities within RareShare creating an umbrella group that encompasses a lot of these different communities that are very similar in character and so there are

00:26:00

Lot of things that “in the pipeline” so to speak that are going to be integrated into RareShare in the coming months.

Dr. Mohammad Al-Ubaydli: That’s good o know. David, thank you very much for telling us about the site and I do recommend it greatly and I look forward to its future and thank you very much for your time today.

David Isserman: Thank you for having me on and I look forward to talking to you again in the future.