Can Professional Medical Societies Further the Ideals of Participatory Medicine?

Professional medical societies are not quite like the secret society Skull and Bones at Yale University, but they may well look that way to many patients. In most cases, their sole reason for being is to serve their members in a pretty narrowly defined way. The services generally include continuing medical education programs, an annual meeting, promoting research, advocating for public and political awareness of the value of the specialty, resources to support clinical practice, and more mundane perks like access to group insurance (malpractice and otherwise). Define the mission of the society a little less narrowly and it’s not hard to see how that mission can be aligned with that of participatory medicine. We often argue in this blog that full participation of all parties in health care will yield better, more efficient care. Such care will benefit the members of a professional society. Further, patients are taking part in research not just as guinea pigs, but as organizers and directors. This benefits the societies’ research missions. But, are medical societies poised to understand this, and if so, how do we guide them?


The answer to the first question is yes, for several reasons. First, medical societies understand that the Internet is a critical tool for marketing and advocacy. Thinking about the Internet in that way, as “Web 1.0”, most societies have unwittingly added young technical staff who realize that there’s been a shift to Web 2.0. They may not be digital natives (most digital natives are still in high school or college) but they are willing to challenge the conventional wisdom linking this technology to marketing. Secondly, clinicians themselves may have a higher than average rate of technology adoption. The same doctor who resists use of the electronic medical record at work, may well use her Blackberry to network with friends about hobbies, use the Web to contribute to blogs, have GPS integrated into her phone, etc. etc. Thirdly, some professional medical societies are using services like those of Inspire.com, to create and maintain interactive groups for support of members as well as patients interested in learning more about their illness. Finally, I’ve witnessed a subtle move in the direction of participatory medicine at the societies of which I’m a member. The American Academy of Neurology, publisher of the journal Neurology , has promoted for several years it’s “patient pages” that present important research findings to the general reader. Additionally, just over one year ago, the AAN totally revised it’s web site under the guidance of a very talented and forward thinking group of Editors and Staff. So, how do we guide a group like the AAN, and others, poised to embrace Web 2.0 and participatory medicine?

Let’s say that comments to this entry will be read by leaders and technical staff at medical societies everywhere. If so, the impact could be substantial. After all, these societies have money and incentive to change the way health care is performed. I’m hoping for a lively discussion. To get things moving, I will present some principles that I think should guide the next generation of online services at professional medical societies. With any luck, they are all wrong or incomplete and great new ideas will emerge from this discussion. Here are my starting guidelines:

  1. Don’t even think about supplying “expert content”. Yes, the society’s members may well be real experts on specific medical topics. Whether you like it or not, it’s probably those very members who have been contributing to the myriad health content sites like A.D.A.M, Healthwise and even the National Library of Medicine and specialty sections of NIH like the National Institute of Neurological Diseases and Stroke. The private and public sector is already on it, and doing quite well, thank you.
  2. Develop tools to facilitate the creation of a different kind of knowledge, the knowledge that comes from collaboration between patients and providers. Tools that promote interaction make “expert content” more useful to all parties, clinicians included. Sub-specialty wikis of medical knowledge contributed by patients and clinicians should abound on your society’s web site.
  3. Open membership to and engage patients; in the workings of the society, it’s offerings at conferences and online.
  4. Help keep members and patients organized. Use the bully pulpit and zeal of the society membership and the academic reputation of the society to become the entry point to resources of all kinds relevant to the illnesses of interest to the society. Don’t delude yourself into thinking only the society’s resources are valuable, but partner with and link to all resources to support patients with the illness. Supply context for the resources, and ways to organize and track them. Experiment with tagging and filtering. Compete with Google!
  5. Foster community though partnership with the rich network of online groups and discussions that are already in progress. Respect those conversations, join them, and take part. Don’t oppress them. Create and foster social tagging and networking so that patients and clinicians talk together.
  6. Make research transparent. While recognizing the gifted scientists that are certainly members of the medical society, encourage patients to get involved and even take charge. They are often motivated by life and death concerns, medical researchers rarely bring that urgency to the lab or clinic.
These are just a few starting guidelines. I would love to hear how others would advise a medical society to proceed.

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6 Responses to “Can Professional Medical Societies Further the Ideals of Participatory Medicine?”

  1. Susannah Fox says:

    Dan, thank you for pointing to the “patient pages” on the neurology.org site. I found the articles to be informative and well-written, so I wonder if you could elaborate on the difference between this type of expert content vs. what we might find on A.D.A.M.? My guess is that your first principle refers to general expert content (we can rely on general sites to define an aneurysm) not a review of a new journal article (someone dealing with the aftermath of an aneurysm would appreciate hearing about the evidence base for preventive screening tests).

  2. Ted Eytan says:

    Hi Dan,

    Susannah guided me to your post which provides hope for professional society participation in Health 2.0. I have a question for you – what is the origin of the creation of professional societies? Why do they exist? And based on this, is participation compatible with the “why?” of their existence?

  3. Dan Hoch says:

    I’ll respond to two posts with one. Susannah’s question first, then Ted’s.

    I think the beauty of the “patient pages” is that they put recent research topics in context. Content on ADAM and others is (hopefully) de-jargoned medical textbook content. I’ve edited for ADAM and I can say that getting rid of Jargon is my goal, dumbing it down is not.

    Ted raises a really good question, but I’m not sure the origin of the professional societies is really relevant at this point. (in other words, I don’t know why they exist). I suspect the original reasons are similar to the present reasons, to advocate for their members and to create an environment for communication between members (e.g. an annual meeting, sub-sections to connect members with similar interests, and a membership directory). Of all the possible reasons, the one I think is a more recent addition is to support the practice of the subspecialty.

    It’s this latter reason for the societies that I think is most compatible with participatory medicine. Clinicians are now being asked to focus on the patient experience (call me Pollyanna, but I think this is really happening). As they realize that patient satisfaction, safety and quality of care are important, they turn to their professional society for tools or services that will help them. I’ve seen this at the Academy of Neurology, where in a focus group about the Academy’s patient site (I’m not going to direct you there, since it is in serious need of modernization). The clinicians in the group were very interested in seeing their Academy supply tools, information, and support for patients. They knew that if they could direct their own patients to a high quality site that supported some degree of self care, it would make the clinician’s life easier. At least it’s a start.

    But, back to the issue, if we get a society’s attention, and the leaders are willing, what should they do to champion a participatory approach?

  4. Interesting subject – I’ve often heard that professional societies originally came about as an exclusionary thing, but given that they exist today, it’s possible for them to become a generator of value in a non-exclusionary way.

    In this instance, as Dan suggests, a society can become the vehicle for spreading a new paradigm.

  5. Susannah Fox says:

    FYI, there are a couple of good comments on The Health Care Blog’s cross-post of this essay.

  6. Bern Shen says:

    Interesting point about getting the inherently elitist professional societies to embrace the wisdom of crowds.

    As we all know, docs & researchers are clearly experts in many facets of disease but patients have lived experience & sometimes life & death motivation. Diana Forsythe, among others, has pointed out how differing points of view & assumptions can even unwittingly get baked into the design of intended solutions.

    There may be a connection here with patient-directed research (e.g., Cure Alzheimer’s Fund, Myelin Repair Foundation, Michael J. Fox, et al.), which is emerging as a real force to accelerate translation of research to actual products.

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