Friday, February 01, 2008

Health 2.0? Don't Get Me Started ...

A few weeks ago, Christopher Berry e-mailed me that he was launching a new site called DiabeticLive. I have been far too slow in updating my links section, but have since added it. Chris also runs diabeticdiscussion, which has an active message board and community.

The launch came just prior to the introduction of another social networking site, this time, which Kerri eloquently addressed the other day. The site has a very inviting feel and the members are quite hospitable. But as Kerri noted, "Another feather in the Health 2.0 cap or a real trailblazing network? We'll be the judges on that." and she's right. The real issue for me is that much as the nonprofit world has evolved with charities focused on every conceivable niche one could possibly imagine, to some extent, I think the same thing is happening with all of these social networking sites. I'm not big on this Health 2.0 stuff; to me, there are already so many out there and I cannot help but wonder if there's enough room for all of them to flourish. I think there IS, provided a few rules are followed.

I am the first to argue that competition is a good thing (in fact, I have written an entire article about the benefits of competition, which seems to be lacking in the insulin market right now thanks to lawmakers' inaction and penchant for endless conversation driven largely by drug company lobbyists), but I have personally reached a point where I no longer have time to be active on every site, and that's one reason I am concerned about the proliferation of all of these sites out there. I have started to confuse my login names, passwords and even site names!

To be sure, the founder of, Jens Christensen, seems like a really nice guy and I hope his site will flourish, in much the same way that Manny's TuDiabetes site has. This is only my personal opinion, but I would strongly recommend that Jens consider focusing on a particular niche which is not presently being served by the many sites out there. Perhaps his unique focus should be on the type 2 universe?! That's really up to him, but its certainly a strategy worth considering.

A while back, Gina and I had a conversation about the then-future of her (and Jon Schlaman's) site, DiabetesTalkFest (DTF). She mentioned that activity on the message boards had slowed down and she was thinking about doing something radical to help things along. My recommendation to her was to focus on the one area where her site really had differentiated itself: hosting online chats in the site's chatroom with people of interest to the diabetes community. I believe others told her the same thing. DTF was unique because it was created by people with diabetes, and therefore has a more objective perspective than some other sites. Also, DTF has, over the past few years, had a terrific ensemble of what I would describe as "diabetes luminaries" ranging from Nicole Johnson-Baker (of Miss America and dLife fame) to Linda Gonder-Frederick, from University of Virginia Health Systems, and one of the developers of Blood Glucose Awareness Training (BGAT) for people with hypoglycemia unawareness. In between, DTF has had guests from all aspects of life with diabetes, and the site's chatroom functionality and guest roster has enabled it to maintain a vital place in the diabetes community. It may not have the same number of members as TuDiabetes, but there is no question that the site has found its calling, and I think Gina and Jon have managed the site well to reflect changes in the world around us.

Interestingly enough, I also recently spoke with Kelly Close about possible changes they may be exploring for their diaTribe site. I told her basically the same thing I said to Gina. My suggestions to Jens (or anyone else who is competing in this arena) are as follows:

1) Find your niche, one which you and only you can address, and go with it.

2) Do not try to compete or overtake organic communities. Consider that a few years ago, another network called the Diabetes Blog Network, which aimed to become a "community is designed to help diabetes patients and their caregivers by creating a centralized destination for helpful, personal diabetes information" but it was no secret that commercial interests saw the rival Diabetes OC as their target. I remember Allison blogged about that, saying something like "I am hoping they will just disappear" or something to that effect (that was before she switched her blog from Google's Blogger to Wordpress, so I couldn't find the posting ... maybe Allison can refer me to it!). Regardless, that has largely happened because the Diabetes OC was the first, the original and the community had already been established. The lesson: don't enter battles you cannot hope to win!

3) Third, the whole point of these online communities is sometimes lost by people sponsoring these seminars. Its all about the community, not who can develop a fancier website or has the niftiest features. That is not to discount that features can and do count, but to push commercial interests over the interests of the community is one reason many such communities have tried and failed. I think working together is certainly the new mantra.

4) Finally, take advantage of these networks to promote your site, and what is different and unique about yours. Again, it incorporates all of these communities and work with, rather than against them, to promote what your niche is all about.

So, those are my words of advice. But Health 2.0? Please, I think that may be just a forum for discussing these self-evident truths!


Jenny said...

As usual you have put your finger on a growing problem. People continually ask me where is a good place to hang out online where they can learn a lot about diabetes. But I really don't have an answer because with all the fragmentation no online diabetes venue seems to have the critical mass that it takes to make an interactive environment worth visiting.

The advent blogs has really dealt a blow to interactive environments, because people who used to post long informative messages now blog. But the blogs don't spark the kind of debate and interchange of information that the old boards and newsgroups did.

I don't see any easy answer. I get a huge amount of traffic to my own sites, so the effort I put into writing them is worth it, but I miss the high level of interaction I used to experience when posting on the old diabetes newsgroups. The places I do post don't have the hundreds of messages a day that used to run through those groups, so it is hard to feel the same community spirit.

And the commercialization of ALL online fora is indeed a problem.

You are right that specialization helps, but what really used to make boards fun were the friendships people built. When there were fewer choices critical mass was much easier to reach.

David said...

Scott, I think you've definitely hit on an important issue. Competition is a good thing, but it needs to be done a certain way to be successful. The online diabetes community is close nit and directly competing by copying someone's idea is not going to make anyone successful. That's why a site like the Diabetes Blog Network never took off. It was unable to integrate into our ecosystem.

Elizabeth and I have tried hard not to steal anyone's concept or step on anyone's toes. There's a lot of people with diabetes out there and room for a lot of places to interact. In the long term, I think working together, building partnerships, and focusing on niches is in everyone's best interest.

In regards to issues about building a health ecosystem, we've had an altogether different problem lately. As we've edged toward 30 new users and 600 posts a day, it's become a lot harder to keep up with our community. Whereas it was once a big, happy family, now it's a big, happy, extended family with various clans. People still want to talk with everyone but it's becoming too hard to do so. You inevitably end up chatting with other pumpers, other t2s, or just hanging out in the chat room. But even chat can become hectic with 20 people online.

I've been talking to other people that run successful forums and it seems there's no easy solution to that type of problem. Big communities inevitably split into smaller ones. Perhaps that's a metaphor for what's happening to the whole O.C. as it grows. Once you reach a certain critical mass, there's a tendency for people to search for a smaller, more intimate environment.

I really look forward to hearing other people's thoughts on this topic.

Lyrehca said...

Very astute. I have wondered just where people find the time to check out all the different online diabetes communities as they seem to be popping up all over the place.

Scott S said...

Thanks for all of your comments, I think we're all thinking similarly about this development. I agree with you Jenny about how the proliferation has changed the sense of what online communities have become.

Also, David, you may be right about the group(s) fragmenting, but one of the things you and Elizabeth have done is enabled that to happen. Perhaps your next challenge is to address a means to move to the next level?! Just thinking aloud. For example, enabling widgets to include the Diabetes Daily Headlines, or perhaps headlines from everyone, or from a smaller group (type 1, type 2, parents of children with diabetes, healthcare providers, etc., etc.). One of your site's greatest strengths has been the fact that your "widget" (or code) has helped proliferate the Diabetes OC community, and perhaps that is the next phase. Naturally, I would not suggest eliminating the "scanning all blogs" option, but perhaps there could be new ones to "scan type 1" or "scan type 2" or "parents of children with diabetes" blogs? You are right that with 30 new users and 600 posts a day, the community has experienced some growing issues, and perhaps this is the next evolution? As always, I do think you've done a good job of not stealing anyone's concept or stepping on anyone's toes, but certainly there must be thoughts as to where things go next!

Scott Shreeve, MD said...


I generally agree with your take on the flourishing health social networking sites. Many people dismiss them as mere chatrooms, but many are becoming far more than that. In addition to the routine "you are just like me" connections, there are also serious health ramifications of self reporting reactions to meds, management regiments, outcomes results from therapy and related "collective intelligence" concepts wherein the site becomes more valuable as more people use it.

You also make a common mistake when referring to "Health 2.0". It is not limited to TECHNOLOGIES such as social networking, wiki's, information sharing, transparency (which is so, like 5 years ago [this is the normal adoption lag for healthcare]), but it is also indicative of an entirely new movement within healthcare toward a new way to interact with the health care "system" (no coordinated system of care exists outside of a few vertical integrated care delivery organizations like the VA, Kaiser, Mayo, etc).

So the Technology + Reform within health care is creating next generation health care system. Social Networking sites, like the ones you comment one, are merely one small manifestation of that. If it were limited to that, I believe most of us would say, "thats interesting" and move on to more interesting things.

Search Health 2.0 + Movement + Shreeve to find additional details regarding this stuff.

Anonymous said...

Scott, I signed up at this week and I admit to feeling a pang of guilt since I felt I was betraying my "loyalty" to TuDiabetes.

I agree that the these newer communities can survive as long as the focus stays on the community. This is what made me come back to TuDiabetes day after day. But I too have started to feel "social networking" fatigue and even my blogging has slowed down.

Maybe I just need to go sit in a cave for a week.

AmyT said...

Hey Scott,

Interesting post. We should talk. Health 2.0 is transforming the experience of being a patient, in many good ways.

Anonymous said...


Great post, as usual. The thing I have found most interesting about these blogsites is that everyone who is a patient can find others of like mind with similar problems.

I've always wondered why, unlike the ADA and JDRF, the purpose of one of these sites couldn't be to actually find a cure that no one else is looking for. For example, setting up a site with a non-specific set of guidelines where Type 1 patients can submit anonymous profile of events: i.e. medical history which they believe led to their diabetes diagnosis; exploration of pre-diabetic significant events (vaccination, illnesses, etc.) The forum, itself, would have to be "loose enough" that outside-the-box possibilities and theories are not eliminated from discussion. I would like to see ALL of the diabetes blogs go away because collectively--we can find a cure that has long escaped traditional medicine and their "inside-the-box" thinking.

Who better than a large group of patients with interest in a cure to explore the commonalities and like Sherlock Holmes said, "When you have eliminated the impossible, that which remains, however improbable, must be the truth." In other words, we might find, "It's elementary, my dear Watson."

Because of our present care-giving system, we get to exchange war stories regarding our complications, our poor choice of drugs, our inadequate care, our poorly-performing charities, our ineffectual government regulators. Bloggers can also gain insight into their care with the help of other patients, which is a good thing. Living in "Deliveranceville" certainly provides a different perspective than you enjoy, Scott. Blogs afford me a connection to a bigger, more knowledgeable base than anything I could find locally.


Bernard said...


Good post as always. I think your idea of each of this sites addressing niche markets or needs makes a lot of sense. Currently I've joined four diabetes networking sites. My main loyalty is still with, but the memberships at these sites overlap to some extent. So ignoring the new ones means that I may be missing something.

I guess it's like a lot of new phenomenon. Lots of fragmentation initially and then we'll see some consolidation.

manny hernandez said...

It took me a while, but here is a commentary I've posted finally about this matter:

Thanks for sparking such a great topic, Scott!