How Social Networks Are Changing Patients … And Medicine

Posted by: in Healthcare Insights, Social Media Insights & Trends on April 28, 2011

I still remember the first time I logged onto Google Health. I dutifully inputted all my minor ailments and lab values and hit “save.” And then nothing happened. There was no medical advice, no additional reading, no pointers on what to do with all of the information. The service wasn’t anything more than a repository. I played with it for a day or two longer and never logged in again.

Still, it made more sense for me to tell Google about my health problems than to stick them elsewhere on the web. Forums — often chock full of wildly inconsistent information — weren’t for me. And I had little desire to bombard my Facebook or Twitter community with my medical record for personal reasons: my personal and professional relationships on those network don’t revolve around my medical history. (These issues were well articulated by a research team from the University of Michigan last month.) Given the inadequacy of existing tools, there was a need for a resource that was as serious about data as Google Health, but also one that was serious about community.

That need is now being filled. Two announcements in the last week have underscored the big way that online patient networks are coming of age.

Yesterday, researchers from Children’s Hospital Boston published a study in PLoS One that showed how information voluntarily provided by the TuDiabetes community could be used by researchers. The study’s goal was to track a measure of diabetes — hemoglobin A1c — and the researchers found that the value reported by users matched the level for people with diabetes that the government collects. But unlike the government data, researchers can interact with the TuDiabetes population, allowing a level of feedback that can’t be achieved through standard population-based research.

On Monday, the research team at — perhaps the most robust of the online patient networks — published an article in Nature Biotechnology that found that lithium did not slow the progression of Lou Gehgrig’s disease. The study drew on the submitted data of 447 patients on the site and refuted earlier research that suggested a benefit. What’s more, PatientsLikeMe has now opened itself up to patients with any medical condition (previously, it had been restricted to a select set of diseases, including multiple sclerosis,  mood disorders and Lou Gehrig’s disease), expanding the patient pool and creating the potential for more research collaborations down the road.

To be sure, there are limitations to using non-randomized, non-blinded, self-selected patients and self-reported data, and no one should suggest that data gathered from these communities can or should replace other studies. But they provide an interesting augmentation to more traditional tools.

The problem with Google Health was that I never got anything back for my use of the tool. There was no benefit to me — or anyone else — from keeping my data locked up. And there wasn’t any benefit to sharing on Facebook, either: my friends are very dear to me, but I don’t trust them with decisions about my health. TuDiabetes and PatientsLikeMe make sure that there is a benefit to participating: in addition to the support of a community, the data that’s gathered can be used to answer medical questions that are important to both users and society at large. It appeals to our best instincts.

That’s a sustainable model for the future, and kudos to those two communities for bringing us closer to that future.

[UPDATE: Some other smart takes on this week’s news:

By: Brian Reid

Brian Reid is a managing director at W2O Group, where he oversees influencer relations. He is a former journalist who believes content really is king.

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7 Responses

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  1. Brian, thanks so much for connecting the dots. This post is another example (along with the 2 you cite above) of why I tweeted, “Oh, thank goodness, here come the bloggers.” Amy Marcus of the WSJ gets it, as do some other MSM reporters, but people like you REALLY get it and can help other people understand the importance of these publications and developments.

    “I don’t know, but I can try to find out” is the default setting for people with health questions (and the thrust of the last 10 years of Pew Internet’s health research).

    “I know, and I want to share my knowledge” is the leading edge of health care (and what I’m focused on now as a researcher). Peer-to-peer healthcare is happening and it is being driven forward by two forces: 1) the availability of social tools and 2) the motivation, especially among people living with chronic conditions, to connect with each other.

  2. Brian, I echo Susannah thanks for connecting the dots. And as always, Susannah’s comment adds a equally valuable addendum. Your summaries are timely for me. Thank you.

  3. Thanks for the link Brian. I really think this a such a rich area for study, and not only for clinical outcomes, but in trying to find out how people interact with one another online, their motivations and barriers for sharing potentially sensitive health information, and how to build spaces that can be mutually beneficial for the users and healthcare writ large.

    You make a great point that I didn’t immediately consider: “The problem with Google Health was that I never got anything back for my use of the tool.” We know from the success of social media that that return value is really the crux of the issue. Our job is now to figure out how we can start making health care a two-way space for patients. It’s becoming clear from these two examples that we’re getting off on the right foot.

  4. An insightful article.

    I bring this up because I think this is closely related: And I believe this is a sustainable model!

    (disclaimer: I work in the company)

Continuing the Discussion

  1. Clinical research in patient social networks | #prismSA linked to this post on May 8, 2011

    […] “How Social Networks Are Changing Patients … And Medicine” from WCG CommonSense […]

  2. Pew’s New Data and What it Means for the Future of Health Info | Common Sense linked to this post on May 12, 2011

    […] patients connecting to each other more (and garnering benefit from that interaction)? I’ve staked my claim that this is one of the trends that will influence the future of medicine, and Pew emphasized the […]

  3. Why We Need Google Health (or the Idea of a Google Health | Common Sense) linked to this post on June 30, 2011

    […] — as I’ve said before — shoving data into a user-controlled health database wasn’t all that appealing. In […]

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