Using professional societies to advance participatory medicine

Dan Hoch is a neurologist based at Massachusetts General Hospital
and an assistant professor at Harvard Medical School. An early
developer of online resources for patients, Dan helped found Braintalk.

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. These services generally include continuing medical education programs, an annual meeting, promoting research, advocating for public and political awareness of the value of the specialty, providing resources to support clinical practice, and more mundane perks like access to group insurance (malpractice and otherwise).

If you 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 on the e-patients 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.

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.

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

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.

6 replies »

  1. Get involved and take charge! Couldn’t have said it better myself.
    What there is a real lack of is practicle support for the simple changes in stress management, diet and lifestyle that can create real change in quality of life.
    I worked in a large hospital for many years and then spent many more seeing people in their homes. Simple change is effective, and manageable with support.
    Biggest factor I saw was frequently unmet oxygen requirement with activity. Nothing else is effective if this simple element is missing.
    Yes I say, create content.
    Lots of useful content.

  2. I would love to see that as well. We can’t even easily print out paper based information to hand to our patients, let along direct them to sites that they will find helpful (a choice of media on that site, including video would be even better!)
    This is a great idea about how a medical society can add value, and it makes me rethink my first tenet (“don’t even think about creating content”). Right now, there are few if any sites offering multimedia medical information and given that everyone processes information differently (text vs. audio vs. visual, etc) there is a need for it.

  3. Great discussion. I am wondering however why a society wouldn’t want to post expert info irrespective if it’s already out there or not. Others mentioned the reputation of Medical Societies – it’s strong – a validation of whatever information is presented. And the neat thing about the internet that is if you hear the same thing from several reputable sources it must be correct. So I believe medical societies have something to add in the realm of expert content, and of course there are all kind of innovative ways to add the content – one which I think can be powerful is videos of Physician leaders explaining the complexities of health care that the often don’t have time to do in the office setting. I would love to see Physician take out their prescription pad and say “I would like you to go to http://www.anymedicalsocityhomepage.org and watch these three videos – one will give you background on the disease I am diagnosing you with and one will explain the therapeutic regime I want you to follow and the last explains the prescription drug I am asjking you to take”.

  4. Great points from both Josh and Carolyn above. Many Ix and EMB “tools” presently come from a mix of sources. If you are in a large or hospital/institutional practice, you may have payer, institutional, commercial for profit or home grown versions of these tools. Your society may or may not be competing to offer up similar tools. If you are in a small group, loosely affiliated or not affiliated with a large institution, your professional society may be your only route to this information. Plus, as Josh points out, in terms of evidence based medicine summary statements and guidelines, the reputation of the professional societies is often outstanding.
    I also agree that clinicians would readily embrace convenient, point of care, tools supplied by expert colleagues at their professional society. At a focus group at the Academy of Neurology, this was one of the messages I heard. Now, if those colleagues included expert patients, there would be even more progress!

  5. Bravo. I would add this:
    Patients who are already seeking Information therapy without guidance would benefit tremendously from physicians using the web as a tool for dialogue and teaching about EBM, assessing evidence, and translating excited reports on new therapies into realistic timeframes.
    We need to engage in the development of Health 2.0, and it will serve us all much better.

  6. Dan, you are right on target about importance of medical societies playing a proactive role in advancing participatory medicine. I agree with everything with all these recommendations and would add two more things.
    First, medical societies can provide tools their members that facilitate the delivery of information therapy (Ix) and participatory medicine. You actually allude to it earlier, based on AAN has done to promote patient pages, and other forward-thinking societies have already taken steps in this direction.
    Most physicians want to prescribe information to their patients to facilitate more collaborative care, but they don’t have systems in place that fit that work into the process of care delivery. If one of their most trusted sources (their professional society) can make it easy for them to do the right thing, they will probably jump at the chance.
    Second, as medical societies are promoting private- and public-sector reimbursement changes to better align incentives to provide high-quality care, they can make the case that participatory medicine, Ix, and related care support should be rewarded.

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