Significant Science

Before we begin, John, I’d like to give readers a bit of background on why they might find this interview interesting.

There has been a lot of discussion about the e-patient movement (embodied by e-Patient Dave, who is increasingly listened to by those of us who follow the Health 2.0 and Medicine 2.0 movements) and we seen the founding of the Society for Participatory Medicine and the launch of its periodical, the Journal of Participatory Medicine.

And we have seen news stories lauding the success of the online patient community, PatientsLikeMe and have read useful white papers such Kevin Kruse’s Patients Rising: How to Reach Empowered, Digital Health Consumers.

And yet, interestingly, amidst all the talk of the rise of online health we have also seen the closure of several online patient communities/social networking health sites. Trusera is one of those that shut down.

This brings me to you and MedHelp . You and I both attended the 2008 and 2009 Health 2.0 conferences. What strikes me most strongly was how much buzz there had been at the 2008 meeting about online patient communities and how that topic had pretty well disappeared by 2009 save for the predictable presence of one of the two Heywood brothers of PatientsLikeMe—in 2009 it was Jamie. In 2008, Ben. You and MedHelp were one of the few online health communities represented at the 2009 gathering as both presenter and in a booth in the exhibition hall. At the 2009 meeting, there was much more discussion of hardcore healthcare IT matters such as electronic medical records and of online health, represented by such services as American Well and Hello Health as well as the usual contingent of VIPS from Google Health and Microsoft HealthVault and coverage of various health tracking tools such as The Carrot.

But the online patient communities have fallen by the wayside for the most part. Rather to my own chagrin, as someone who worked in a medical library and who had urged medical librarians to make themselves aware of the increasing amount of health information seeking by consumers at online patient communities and what had appeared to be the increasing occurrence of such material in Google search results on queries on health-related topics, it appears that I grossly misjudged the staying power of such phenomena. I am turning to you as an expert and hardy survivor of the devastation in the commercial online patient community sector for your insights into what happened and soliciting your views as to the future of patient social networking.

I chatted with you at Health 2.0 2009 and was fascinated by what you had to say and I think your comments would make for valuable reading by those interested in the e-patient movement, healthcare marketing and anyone who works in healthcare (e.g., physicians, nurses, pharmacists, public health workers and social workers) as well as health economists and sociologists. And consumers of healthcare—which is the vast majority of the population.

Let’s start with the matter of terminology. I noticed in an email you wrote me that you used the term “online health community.” I just did a quick Google search on PatientsLikeMe, Trusera and OrganizedWisdom and saw such terms as “community-based personalized medicine platform,” “health-focused social networking sites,” “health 2.0 community,” and Web-based social network.” I usually use the term “online patient communities.” Can you help me out here? Is there any standard term? Why do you use the term “online health community?” And what make a “community?” For example, at Health 2.0 2009 Wayne Gattinella, President and CEO of WebMD, was of the panelists in the session, The Consumer Aggregators. But he objected to the term “aggregator.” And yet WebMD offers not only health news and tips but also communities (which it also labels simply “discussion boards” and “support groups.”) They seem pretty limited in functionality and features compared to the quite sophisticated Web 2.0 look of PatientsLikeMe. Could you please outline for us what you would consider a true online health community?

There is no standard terminology in part because each of the offerings is different. For us the term online health communities captures our communities well. They are online (including mobile) communities where people can connect with doctors (or other experts) or with others that share their health interests. Our site helps patients as well as those looking to stay healthy. In addition to communities we provide PHRs and the applications to manage your health.

Getting back to WebMD, how would you differentiate MedHelp from it? For example, I have just been poking around WebMD and came across this notice:

“Olivia_WebMD_Staff
Community Growth Update
Posted: Oct 09, 2009

Dear Members,

We recently announced that your WebMD Community is going to be expanding soon.

Here are some of the new offerings that are on the horizon:
• Create your own public and private spaces to connect with others.
• Easily keep up with discussions that interest you.
• Create your own polls.
• Quickly and easily share tips and resources with other members.
• Create individual profiles for each topic you join
• Get MORE feedback from high-level health experts.

We can’t wait to share these wonderful new community additions with all of you!

Be sure to direct any questions, comments, or concerns to us at webmdcommunity@webmd.net.

Your WebMD Community Management Team”

That still sounds a little on the unexciting side. But it is interesting that WebMD wants to expand rather than eliminate the communities. And speaking of the matter of the elimination of communities on consumer health sites, I must say I was impressed with your wealth of knowledge about your now defunct competitors in the online health community space. I am going to throw some names at you and ask you what you know of the status of each site in general (closed down or thriving) and what the status of each says about the state of online patient communities: RightHealth, Healia, Revolution Health, HopeCube and MDJunction.

WedMD does a great job of providing medical information. Our key differentiation is our focus on personalized health information. We have learned that once people learn about the condition they usually have a lot of personalized questions e.g. how does a condition relate to me because I am pregnant and diabetic. That’s where we specialize. We have the world’s largest online communities and so you can find people who share your concerns no matter how rare they are. In addition, if you want to ask and expert a question you can ask one of the 200 doctors and experts on our site. We also provide you with the tools to track and manage your health. For example, if you are trying to conceive our ovulation tool will help predict when you are ovulating. Our tools can also be shared with your doctor to help improve the quality of care you receive. So it is our focus on personalized health information that sets us apart.

One of the things I found really fascinating and that was not really commented on at Health 2.0 2009 was the way OrganizedWisdom is now downplaying the role of non-medical people in the creation of its Wisdom Cards and how much OrganizedWisdom’s Co-founder and CEO Steven Krein kept using the word, “physician” as if he wanted to envelop OrganizedWisdom in the fold of orthodox medicine and medical authority. That was quite a switch from last year when the patient was all and the medical establishment was something that a savvy consumer consulted only after educating herself at OrganizedWisdom and immersing herself in WisdomCards.

MedHelp, by contrast, has extensive relationships with some of the leading medical centers in the country. Could you comment on this about face of OrganizedWisdom and how it now seems to be marketing itself more as a destination site for health search than as a health community? It seems to be having something of an identity crisis. To wit, it offers neither the ties to the medical community that MedHelp offers nor does it seem to have the wealth of resources that consumer health sites such as RightHealth and Healthline do—let alone the free and authoritative MedlinePlus of the National Library of Medicine.

What do you see as the future for OrganizedWisdom? In a way, has the rise of the e-patient movement actually hurt the online patient community sites in that as more and more health information becomes available consumers have come to regard the information on sites like OrganizedWisdom and comments by fellow users of sites such as the now closed Trusera as of little value compared to what they can get from recognized institutions that have extensive online offerings such as the Mayo Clinic .

I think Organized Wisdom will continue to evolve until they find their niche in health. For now, Organized Wisdom is now focused on the physician and it is ironic that PatientsLikeMe says they will never have a physician on their site. At MedHelp we see the value in both. Patients can learn from each other and from doctors, and, doctors can also learn from patients. We have had articles published by doctors based on insights they gained from answering patients questions on our site.

Let’s now turn to your own site, MedHelp. One thing that sets you apart from sites like OrganizedWisdom, which was founded in 2006, is that MedHelp has been chugging along nicely since 1994. Could you please comment on how it has managed to survive both the dotcom bust of 2000-2001 and the troubles that its peers have failed to overcome in the last two years? What accounts for your longevity?

The key to our longevity is delivering real value to our users. We don’t buy any traffic to MedHelp and so we focus on delivering understanding and meeting the needs of those that come to our site. We have spent time on each condition and have built the necessary communities and applications, and partnered with the doctors and hospitals to support it. We have found that by doing a good job of meeting the needs of our users they back and tell others about us.

Please tell us about your affiliations with a pretty impressive roster of institutions and organizations (e.g., Johns Hopkins, the Cleveland Clinic, Mount Sinai). That is quite different from PatientsLikeMe which has a resident neuroscientist on staff and a nurse, but otherwise is very much a user-generated content site. Could you please discuss the relative importance to your users of such ready access to medical experts and do you see a threat to online patient communities in the rise of actual online health care such as via American Well and Hello Health or might the rise of online healthcare actually help sites like MedHelp and WebMD in that users could consult sites like MedHelp and get a basic medical opinion from one of your resident experts on a discussion board/in a forum and if that medical professional suggests that the patient get actual care the user could simply then bop over to American Well and consult a physician within minutes via video hookup, phone or other fairly immediate means? Do you have any plans to partner with American Well in this fashion? Alternatively, do you see MedHelp as getting into the online healthcare space by leveraging your existing relationships with Johns Hopkins, Mount Sinai etc. to create a service much like that of American Well? MedHelp does not seem to offer direct email access to the providers who host the forums. Do you foresee bumping up, if not to the American Well video model, as least upgrading to something akin to the Cleveland Clinic’s (which MedHelp is already affiliated with) Remote Second Opinion Service?

Providing our users with access to the best doctors and hospitals has always been very important. We have partnerships with most of the top hospitals such as Cleveland Clinic, Partners Healthcare, Johns Hopkins, Mount Sinai, National Jewish, etc. We have had some of these partnerships for over a decade. Users can ask our doctors questions on our site and if they want a more detailed review then we work with the second opinion services from our partners such as Cleveland Clinic and Partners Healthcare. We also provide health chats where a doctor communicates in real-time with users around a specific condition. It would be hard to provide one-on-one real-time access to the physicians at these top hospitals but we will continue to work with them to provide for the best experience for the physicians and the users.

One thing I noticed as I browsed through the entries in MedHelp’s ALS community is that many of the posts tended not to be by people who have been confirmed to have ALS and who are longtime members of the community (as is the case, for the most part, with the ALS community on PatientsLikeMe), but people who are experiencing worrying symptoms and fear that they may have ALS

Does MedHelp, thus, serve a different niche than does PatientsLikeMe (i.e. the worried and possibly ill as opposed to the longtime chronically ill of PatientsLikeMe)?

Speaking of PatientsLikeMe, as much as I admire the Heywoods, it does seem that they are so much liked as speakers and respected as figures of note in Health 2.0 and e-health circles they don’t tend to be asked tough questions like their burn rate. Do you think that PatientsLikeMe really merits its positive press? After all, don’t MedHelp and patient support groups such as ACOR have many times the number of users? Could you please provide a few numbers so as to put things into perspective? You say on your homepage, for instance, “Monthly visitors: 9.0 million.” Can you elaborate on that? How does it compare to WebMD?

According to the US ComScore numbers, WebMD has 18.4 mm uniques and MedHelp has 5.6mm. That makes WebMD 3.3 times larger than MedHelp.

However, our health communities are by far the largest and we have the largest offering of consumer health applications.

Could you please discuss your business model? MedHelp features some pretty straightforward advertising on its site. Is that perhaps better for users vis-à-vis transparency than the rather opaque finances of PatientsLikeMe? (To its credit, PatientsLikeMe does make clear that it has relationships with pharmaceutical companies.)

Yes we have advertising which is very transparent to our users. In addition, it is important to be profitable in order to be able to keep our services free and be able to serve our users for years to come. I cannot comment on how PatientsLikeMe makes money as I don’t really understand it.

How do you differ most notably from WebMD? I noticed, for instance, that you both now offer advice on pet care and that you both offer personal health records. Do you every worry about trying to do appeal to many audiences and diluting the focus on healthcare?

We were one of the first to offer Pet Health and have been offering it on our site for a few years. It was a result of discussions with our users who expressed how important it was to them. In fact, we spoke to a user who skipped buying their own medications so that she could afford to buy medications for her pet. As a result we created the Pet Health communities and got Veterinarians and Behaviorists to help answer their questions. It grew from there to people using the PHRs to track their pets’ health information. We are now working with our users to take it to the next level.

Was it a hard decision to begin to offer personal health records or is that now becoming an expected feature of any consumer health site? What are particular concerns when offering that service?

Offering a PHR was a natural extension of our health applications. People were tracking various aspects of their health using our tools and wanted to including all that data in their PHR. So we combined the two to create an iPHR (intelligent PHR). The iPHR provides you with the tools to actively manage your health.

How you do see MedHelp in a year? In five?

The people who use our site are very passionate and we will continue to innovate to deliver better personalized health information. We will continue to expand our communities, work with doctors across more specialties, and increase the range of health applications we provide. We would also like to do more internationally to help serve other parts of the world.

Finally, who are your heroes in healthcare, technology, business and in any other field?

My heroes in life are my parents. I was born in Ethiopia and our family left during a difficult revolution. After leaving Ethiopia we moved around the globe and as we grew up we went through different circumstances. We experienced both times when we could offer help and support and times when we needed it from others. Through all of this my parents managed to keep my four siblings and me safe and healthy, they managed to instill in us values that I treasure till today, and they provided us with an education that opened the doors to the world for us. What they achieved continues to inspire and guide me through life.

Thank you for your trouble.