“Practicing Patients” (New York Times Magazine) By e-Patient Dave | March 24, 2008 Categories: patient networks I haven’t dug into this yet, but I will. You? Related 7 Comments Dan Hoch on March 24, 2008 at 2:42 pm The recent publicity given to Patientslikeme.com elicited the following comment from a neurologist colleague (sent to a number of neurologists at the Academy of Neurology): ————— PatientsLikeMe is part of a wider trend of “Web 2.0” sites in medicine that have a “network effect” of becoming more useful as people use them and share information. PatientsLikeMe focuses on interactions among patients; the Times article does not discuss other internet resources that do similar “Health 2.0” communication among doctors or efforts to mix the combined wisdom of doctors and patients. The article that.. [we’ve].. written for the AAN Web site takes such a wider perspective that includes doctors in the health care picture (that seems pretty obvious from our perspective but it is off the radar of many people in the Web world). ——————- I think his ending point demonstrates that many informatics-minded doctors are starting to realize that the physician community is missing the Web/Health 2.0 boat. The reasons for this missed boat phenomena are worth more exploration in this blog. Tom Ferguson covered it a little bit in the e-Patients white paper in the 2nd Chapter, “Content, Connectivity, and Communityware” which he opened with the following statement: “One of the most interesting questions our e-Patient Scholars Working Group came up with in our several years of deliberations was this: “What is it that our professional colleagues don’t understand about the importance of e-Patients?” Part of the answer comes from the work of John Seely Brown. He notes that when established experts first consider the effects of new information technologies and the cultural transformations they produce, they will typically attempt to do so from within the cultural constraints of their established professional paradigm.” I can only hope that with more attention paid to groups like Patientslikeme, the LifeRaft Group (http://www.liferaftgroup.org/about.html), the Liddy Shriver Sarcoma Initiative (http://liddyshriversarcomainitiative.org/) and others, the established experts will begin to understand that the folks with the illness are the real experts. Reply Judy Feder on March 25, 2008 at 8:54 am I first learned about PatientsLikeMe about a year ago, and I think they are real pioneers. Point well taken, though, about the need for these “conversations” to be between patients and practitioners as well as between patients. I truly hope the era of the e-patient comes into its own as a partnership between patients and practitioners, not in spite of practitioner resistance. Reply Susannah Fox on March 25, 2008 at 10:02 am It’s worth checking out Thomas Goetz’s blog, Epidemix (tag line: “trends, technologies and other contagions in medicine and health”): http://epidemix.org/blog/ He was on the closing panel at Health 2.0 in San Diego and I thought he was quite thoughtful (although I have no proof, since I can’t find my notes!). Reply e-Patient Dave on March 25, 2008 at 10:17 am Hi Judy – pleased to meet you. The term “participatory medicine” is starting to spread. I think it’s perfect. You? Reply Gilles Frydman on March 25, 2008 at 1:27 pm Patientslikeme is indeed pioneering some new tools. They are so far the company using the most innovative technology in the Health 2.0 realm. But I am not a big fan of the Health 2.0 misnomer for at least 2 reasons. First there are lots of internet-based, patient-focused, social networking entities that predate, often by 10 to 20 years, the emergence of the web-based social networking sites. Second, the Health 2.0 term makes people think that advanced technology is a requisite to transform the healthcare system. And that point has been shown to be false, over and over again. The long-lasting email-based internet communities have devised their own powerful ways to help patients become very well informed about their condition(s). The term “participatory medicine” is really the best way to describe what has been going on in many of these online communities with patients helping others become aware of the functional level of health literacy necessary to become an active partner in their care. The many thousands of patients suffering from deadly rare diseases who are alive many years after their doctor(s) told them there was nothing more that could be done is a tribute to the knowledge of crowds. The daily advice about state-of-the-art experimental treatments is just an example of how patients participating in their treatments choices can profoundly help health professionals provide optimal care. Reply Dave deBronkart on March 25, 2008 at 5:20 pm Interesting, Gilles – your comment suggests using the term “participatory” in a way that adds to the meaning I’d caught. To me it meant patients participating *with their physicians* in their care; you added the community participating in my care. That’s exactly what happened in my case: my ACOR community contributed useful information, and direction for further study, which I heard nowhere else. Reply Gilles Frydman on March 26, 2008 at 9:27 am We have another current example of an ACOR community contributing information and saving the life of a newcomer. For the last 2 days a cancer patient has been in the news limelight over almost all TV broadcast channels and the News cable channels. Her story is nothing short of incredible! See Brooke Zepp’s ground-breaking surgery. As Brooke told her L-M-SARCOMA group (the community for Leiomyosarcoma patients & caregivers) yesterday: “I try to mention the ACOR list but it gets cut. You guys have actually been my inspiration by telling me that surgery is the gold standard. The doctors don’t tell you this!!! Reply Leave a Reply to Judy Feder Cancel reply Your email address will not be published. Required fields are marked *Comment Name * Email * Website Save my name, email, and website in this browser for the next time I comment. Notify me of follow-up comments by email. Notify me of new posts by email.