Love your post. Your data implies that it will not be enough for patients to educate themselves through web based information, nor will it even be sufficient for us to promote on line communities, as helpful as they may be. In addition, we have to recruit sufficient health professionals, and see the creation of sufficient models of on health interaction with professionals to allow participatory medicine to reach its enormous potential. Filling the space between doctor knows best and leaving the patient to the wikipedia search requires effective interaction with health care professionals. Fortunately, that is starting to happen, but much is left to be done!

I think participatory medicine is a direct result of the internet and is further supported by Health 2.0 applications.

At the risk of sounding like an old and broken record, a lot of what has made participatory medicine has taken place over the last 15 years mediated by very simple technology. It is the power of innovation of human beings with complex needs, together with a solid amount of serendipity that has generated what we know call participatory medicine.

I am in the process of collecting and cataloging examples of what has been done over all these years. I think it is a story that really needs to be told because when these resources were started, nobody could even start to consider what results would come from letting people freely communicate about their disease. I suspect the same will be true with the best Web 2.0 applications. People will start using them in totally unexpected ways and may even build full systems that go far beyond what any single company envisions today.

Do you think it could be said that participatory medicine is the kind of medicine that supports Health 2.0 (sort of like the grand unification of medical practice and health)?

I think participatory medicine is not only easy to grasp, it’s hard to get in the way of. When I see how family members (especially parents) interact with the health system on behalf of their loved ones, it seems a waste to do anything but channel the energy of that bond to help healing by promiting and encouraging involvement. I think it was Andrew Weil, MD, who said that when in medicine we try and overpower the immune system, it comes back stronger. I think the same is true for the parent/child/family member bond.