Andrew Schorr‘s recent comment also merits a separate post:
I am a 12-year leukemia survivor and very grateful to the ACOR community members who helped me numerous times along the way.
I have dedicated my life to creating community online and also, in a supplementary way, on radio. But my concept of community is a bit different. I believe it should not be seen as patients doing their own thing because doctors didn’t either listen to them or give them enough time – or lacked knowledge. I believe patients, caregivers AND specialists/researchers can easily be in ONE community together toward a common goal of better health for current patients AND future ones.
If you look at my little home-grown site, www.patientpower.info (with generous support and cooperation from the nation’s top medical centers AND their patients), we have brought together inspiring patients and renowned experts in a dialogue. In a few weeks we will add P2TV, much like CNN’s I-reports where patients will send in videos of their stories and also their questions. I am hopeful it will take off. And I am actively working to partner with community folks like Trusera and medhelp.org to form a union, in Health 2.0, of patients AND health care professionals who have devoted their lives to those same health concerns.
As an aside, I know the M.D. Anderson docs read patient comments on ACOR lists. They often know what a patient like me is saying BEFORE I come to see them. So the phantom community of patients and docs has been there a long time. Now I am working to make it all transparent.
Here are our current top 5 programs that illustrate patients and doctors working together:
(Note from Susannah: Take the time to listen to a few of these shows — they are a high-quality example of the long tail of podcasts. Big extra points from me for posting not only the full-length audio but also a PDF of the transcript.)