The Wisdom of Patients Report

The California HealthCare Foundation published a report the other day entitled The Wisdom of Patients: Health Care Meets Online Social Media (PDF) which is a nice overview of the current state of Health 2.0. The report is four chapters long: Social Networks Come to Health, What is Health 2.0?, The Business of Social Networks and Health, and What’s Next for Social Networks and Health? More inside…

The author, Jane Sarasohn Kahn, reviews the multitude of reports and survey data that have been published about what consumers are doing online in regards to their health. The first chapter is just a brief overview of what is social networking, the backbone of Web 2.0.

The second chapter seeks to help us define Health 2.0 and focuses on the concept of the “power of collective wisdom.” Repeating James Surowiecki’s contention that crowds often may be smarter than individuals, the author suggests this is the underlying power of Health 2.0 — all of our minds put together work better than any one of us. Perhaps because professionals most fear misinformation being exchanged on social support groups, this is the focus of those who examine such groups.

Both authors however miss perhaps the most powerful aspect of all — the emotional and psychological support that people receive when engaged in a social, group environment. When dealing with life-threatening illness or disease, such psychological components can often be just as important as the information itself. Sadly, as is so often the case when people start throwing around terms like “Health 2.0” and talking about the “collective wisdom of crowds,” the psychological and emotional support components of these social groups isn’t even mentioned in the report.

Chapter two also discusses “lessons learned” about the convergence of health information and technology. The first lesson is about privacy concerns of consumers, but only mentions in passing that privacy and social networking are virtually incompatible with one another. Many social networks in health don’t restrict search engines from indexing their content, so a simple search on anyone’s user name means I can conduct a pretty thorough health history search on that person. Consumers aren’t even always aware of this trail of health breadcrumbs they’re leaving around the Internet and are surprised when they learn it’s been connected to their real life identity.

Other lessons learned including the fact that this remains a legal gray area for organizations to become directly involved in (in terms of liability concerns), and return on investment remains hazy at best (even huge mainstream social networks like Facebook and Myspace have yet to find significant ways to monetize their businesses). The report also notes that health insurers and doctors’ organizations may see little use or benefit by encouraging patients to talk with one another — it will only undermine their own authority. Indeed, this is usually one of the concerns of most doctors who hear about these networks, along with the concern about misinformation being spread by such groups.

E-patients want to learn to become better informed about their choices, and to an existing healthcare business or professional, that could be dangerous. Information is power, as they say, and traditionally information about how healthcare works in the U.S. has been cloaked in secrecy — How much does this test cost? Why aren’t you ordering this test? Why did you recommend this procedure over another? Health 2.0 networks seek to open up the health industry and help consumers get real answers to questions such as these.

Chapter three is a brief 2 1/2 page dive into the business of Health 2.0 sites and starts with advertising. Advertising and sponsorships easily remain the primary revenue drivers for all health websites, including those such as WebMD and RevolutionHealth. Even patient bloggers and other Health 2.0-oriented websites (such as Diabetes Mine) support advertising, because it helps pay the bills in a way that no other model has proven to work. Other business models, such as information aggregation and private labeling (which is really just organization-specific advertising that sponsors a specific service) mentioned in the report, are far less proven and are embraced by only for a handful of companies in this space. Time will tell whether any business model that doesn’t have advertising or sponsorships at its core will be successful long-term.

The final chapter in the report breaks out the usual crystal ball to try and foretell what is going to “stick” with consumers in Health 2.0 in the future. Health ratings is the first bet, which is a pretty safe bet given the dozen or so websites and organizations that already offer such ratings. Health ratings systems have been available now for over 5 years, so there’s already a pretty good track record for them for things like medications and treatments. The real question will be to see whether ratings for doctors and hospitals will be as successful.

Another prediction is that doctors and patients will be peers in the same social network. has such a platform, and it’ll be interesting to see how it will grow in upcoming years. A related prediction is that social platforms will be “knitted together” to offer more collaborative opportunities amongst existing social networks.

Collaborations may produce unlikely combinations that, together, may help to disrupt existing models of healthcare. This is certainly possible, as it has been hypothesized in the past that such combinations could be game-changing. But as with the boom, we have plenty of examples of where such combinations never amounted to much in the claimed synergies (most famously, Time Warner and AOL). Such partnerships often seem more hype than reality. The report notes that GE is planning to leverage multiple media outlets in this manner, yet it seems like this is just another example of Big Corporation driven healthcare and bears little resemblance to what most people think of when they think of Health 2.0.

The last few predictions, about entirely new health companies created just to take advantage of the Health 2.0 trend, mobile phone possibilities, and new patient opinion leaders, are safe bets, but not anything really visionary. Startups are common online to take advantage of any emerging trend, virtually every business plan includes a mobile component, and patients have been opinion leaders in certain areas for some time now.

Finally, the implication in “The New patient Opinion Leader” section that old-style online virtual support groups didn’t result in “practical solutions to chronic health challenges” really seems to be off the mark — indeed, such support groups remain the most popular and widely used forms of communication amongst patients online today. The Internet is a big place and can support all styles of groups — those looking for something new and more socially-oriented, and those who feel comfortable with their existing social networks using more old-style tools (such as forums or mailing lists).

If you’re interested in an update on the Health 2.0 space, the 17 page report is an easy, quick read and has a few insights worth your time. It is probably a report better read by people who have little information about this space, and need to get a good, short overview of it — like a manager, director or VP who thinks their company or organization needs to know more about Health 2.0 in order to leverage it or address it in some manner.


Posted in: patient networks





5 Responses to “The Wisdom of Patients Report”

  1. John, your posts this month are forcing me to slow down and be more reflective. That’s tough in the blogosphere, where there is SO much to visit. But I think you’re right about the risk that flinging buzzwords leads the crowds (consumers and meta-consumers) to overlook what else is going on that isn’t named in the buzzwords.

    From my experience you’re certainly right about the value of having a support community. The Feb 19 post about friends, family and surgical outcomes illustrates it too.

    I suspect, too, that this is a big part of the value of having continuous care from a primary physician we feel we can depend on.

    I wonder if we can evolve a model (a diagram of some sort) showing the aspects we see: the collective wisdom part (fostered by broad access to others’ experiences, via the read/write web), the documented value of connectedness, the (documentable?) value of feeling we have access to our physicians outside of the appointment room.

    But I’m not so sure about your suggestion that developments like going mobile being just same-old same-old. Sure, in the world of Web 2.0, that’s routine – but health IT is positively *crusty* compared to modern uses of the web. That will eventually change, but from what I see, the vast majority of (for instance) patient interfaces are far from being accessible by mobile.

    Good post – provocative, as they say.

  2. The idea that valuable and often life saving information exchange requires to be web mediated is probably the biggest mistake currently made by many of the strongest proponents of the Health 2.0 concept.

    There remains only one universal internet-based application and it is not web-based. Email remains the only way anyone can communicate easily via the internet. All the smartphones can now deal with it in simple and usable ways, unlike the still-clunky mobile web-browsers and their inability to universally render a given web page.

    All of this explains why we have constantly tested many very exciting web-based services over the last 15 years and have consistently decided that ACOR remains firmly email based. I am sure that in the future we will add many mashups and innovative services to our offerings but they will not replace the practicality and universality of email -mediated exchanges.

    We are proud to use the simplest technology to help patients become educated and empowered. As Clay Shirky so rightly says: “Communications tools don’t get socially interesting until they get technologically boring.” Just remember that email was revolutionary and deemed a modern gadget just a few years ago. Like the telephone before: “The telephone is little better than a toy, it amazes ignorant people for a moment but it is inferior to the well-established system of airtubes.” Saturday Review, 1878.

    We also consistently notice that the quality of exchanges taking places through many of the ACOR email communities seem to be at a far higher health literacy level than what can be found in many web-based social networks. Of course there is the famous exception, the communities, where the health literacy level is very impressive. But there is a lack of validated data to confirm what we, the people managing email-mediated medical communities for 15 years, know to be true. Maybe we should do a better job at explaining the depth of the knowledge present in many of them.

  3. Susannah Fox says:

    Since Gilles brought up Clay Shirky, I can’t resist quoting from the conclusion of his recent post titled “Gin, Television, and Social Surplus”:

    I was having dinner with a group of friends about a month ago, and one of them was talking about sitting with his four-year-old daughter watching a DVD. And in the middle of the movie, apropos nothing, she jumps up off the couch and runs around behind the screen. That seems like a cute moment. Maybe she’s going back there to see if Dora is really back there or whatever. But that wasn’t what she was doing. She started rooting around in the cables. And her dad said, “What you doing?” And she stuck her head out from behind the screen and said, “Looking for the mouse.”

    Here’s something four-year-olds know: A screen that ships without a mouse ships broken. Here’s something four-year-olds know: Media that’s targeted at you but doesn’t include you may not be worth sitting still for.

    The other snippet of media that’s worth your time is this Deloitte podcast (ignore the narratrice’s intro — the actual researchers are genuine & full of insights):

    Embracing Disruption: How Consumers Are Transforming the U.S. Health Care System

  4. Jane Sarasohn-Kahn says:

    John, Gilles, all, Thank you for hosting this rich discussion on my paper, The Wisdom of Patients. I certainly did not intend in the paper to marginalize the importance of social support for health online. I have personally benefited from groups online as both patient and caregiver, and will continue to do so…as will legions of other people around the globe. I believe as mobile platforms continue to be adopted and applications created (from iPhones to new-and-improved cel phones that, as Susannah Fox recently said, young people can use like Swiss Army knives) the potential for health support is unending. My point wasn’t to dismiss social support, but to recognize that the technologies enabling social media allow people share information on clinical issues and aggregate beyond small groups and anecdotes. This doesn’t take away from emotional support — it adds to the larger community benefit. Gilles’ point about demonstrating the effectiveness of email-mediated medical communities is a good one. I look forward to learning more. JSK

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