Friday, July 25, 2008

Participatory medicine (by Suzie)

           Wednesday was the sixth anniversary of my first surgery for leiomyosarcoma, a rare cancer. I never thought I'd forget that date, but I was startled when I got an automated message of congratulations from Hyster Sisters, a Web site run by women who’ve had hysterectomies.
          Groups like this exist, in part, because of the grass-roots women’s health movement of the 1960s and ’70s, which encouraged women to learn about their bodies, rather than defer all decision-making to doctors. (Read more here and here.)
           Related to that movement is the new “participatory medicine.” Through the Internet, people can now access much more medical information as well as connect with patients in distant locations. Health-care professionals need to “learn to love” new sources of information, including patients who are experts, writes Gilles Frydman, founder and president of the Association of Cancer Online Resources (ACOR). He says informed patients must be involved in all decision-making. 
           I belong to an ACOR list for leiomyosarcoma, and I volunteer in peer-to-peer programs. I support the concept of participatory medicine.
           In any revolution, however, a danger exists that one tyranny will replace another. We must be careful not to become what we wanted to replace. When people set themselves up as experts, when they are convinced that they know what’s best for others, then they resemble the old model of doctor as deity.
           We fall into these traps so easily. Those who are more educated, articulate and literate, who have more credentials, who have the time and interest, need to make space for the voices of others. We should not create new orthodoxies; we should remain open to challenges, to new ideas.