tag:blogger.com,1999:blog-32053362.post4908071511297842675..comments2024-03-26T00:25:34.026-04:00Comments on Not Running a Hospital: The SCAD ladies set an examplePaul Levyhttp://www.blogger.com/profile/17065446378970179507noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-32053362.post-91509615927062946242011-11-09T15:09:03.030-05:002011-11-09T15:09:03.030-05:00This is indeed a wonderful story, but for me it go...This is indeed a wonderful story, but for me it goes beyond just health care. What struck me most profoundly was the reminder that the Internet (and Google search) has so fundamentally changed how we relate to the world. <br />I think years from now when the studies are done it will be recognized as a primal shift in human social organization.<br /><br />nonlocal MDAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-82726089458724946292011-11-09T07:30:24.944-05:002011-11-09T07:30:24.944-05:00This is indeed an important moment in the unfoldin...This is indeed an important moment in the unfolding reality of patient engagement. For students of healthcare transformation there's a LOT going on here. <br /><br />The big news broke in August in the WSJ: <a href="http://online.wsj.com/article/SB10001424053111903352704576538754057145360.html" rel="nofollow">When Patients Band Together: Using Social Networks to Spur Research for Rare Diseases; Mayo Clinic Signs On.</a><br /><br />The Society for Participatory Medicine happily jumped on it, on e-Patients.net: <a href="http://e-patients.net/archives/2011/08/rare-disease-patient-community-and-mayo-explore-trial-with-far-flung-patients.html" rel="nofollow">Rare disease patient community and Mayo explore trial with far-flung patients</a>. <br /><br />Note that in addition to the patient-initiated aspect of this research, there's also the issue of whether it's possible to aggregate "long tail" patients for rare disease research. This issue has been a HUGE inhibitor for such diseases, I've heard.<br /><br />On the WSJ, somebody commented, advocating for universal care: "I find it a disgrace that in today’s world, these women who are and have been so gravely ill, have had to become their own advocates in order to improve their diagnoses." Susannah Fox of Pew Internet posted an as-usual-insightful follow-up, flipping the observation: <a href="http://e-patients.net/archives/2011/09/when-patients-band-together-far-from-a-disgrace.html" rel="nofollow">When Patients Band Together: Far From a Disgrace</a>. Her point is that the real story here isn't "Healthcare failed people so they had to do it themselves," it's "At the <i>fringes</i> of healthcare, when science was out of answers, these patients <i>could</i> connect - and they changed what's possible."<br /><br />Tellingly, the Mayo Clinic listened. I can't wait for the day when all healthcare providers will do so, as eagerly as Mayo!e-Patient Davehttps://www.blogger.com/profile/16381434866099596466noreply@blogger.com