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Home » Reforming Healthcare » 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, 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.