Every month for the last year, CPsquare members have gathered together to talk with Robert Tollen, the leader of a distributed health support community named MPD-Support-L. It’s like “Grand Rounds” in that world-class diagnosticians show up on the call, but the conversations benefit everyone, not just the patient, who is remarkably healthy.
I heard about Robert Tollen through a friend whose father-in-law had been helped by the MPD-support-L list before he died from one of the several rare blood diseases known as myeloproliferative disorders. Although Tollen wasn’t sure what exactly what we wanted or why, he generously agreed to participate. In the end he said that the monthly telephone conference calls were a “terrific experience” for him and they certainly were for us, too. At first he thought he wouldn’t have anything to say, but it turned out that he had a lot to say, like most good leaders of successful communities.
I thought of the “Grand Rounds” format because many of the conversations in CPsquare are inherently problem-oriented. They focus on challenging situations that demand immediate, short-term help, where a community is being launched, is experiencing growing pains, or is dealing with new technologies. And after several years in existence, CPsquare needed to focus on a healthy community – and in greater depth - as its life played out over a longer period of time. It’s interesting to note that Sir William Osler, considered by many to be the father of modern medicine, invented “Grand Rounds” at Johns Hopkins and lent his name (“Osler-Vaquez disease”) to polycythemia vera, one of the several myeloproliferative diseases.
It’s hard to say everything we learned from the experience. (It’s not hard to see why “Grand Rounds” is described as an important ritual of medical education.) First of all, there’s something very useful about being in regular contact with someone like Robert Tollen, who is so generous of his time in helping people cope with a disease that’s complex and sometimes life-threatening. Second, it’s remarkable how deeply involved a community leader can be in the domain issues of a community of practice: I remember noticing in one of our conversations how very many topics led right back to the scientific intricacies of diagnosis and treatment. Third, it’s remarkable how many little technical pieces work together to support the MPD-Support community.
The MPD-Support list has about 2500 subscribers and is open to patients, family members, and health professionals: http://members.aol.com/mpdsupport/ . It’s been running since 1994 and has members from 41 different countries. A priest in his 30’s who had one of the MPD diseases used the list to find that more advanced medical care for the disease was available in Italy, compared to where he lived in Australia, so he got a job in the Vatican. A 16-year old girl in the UK heard about the choices that others who had taken a hard look at their situations had made. And in the thousands of messages over the years, Tollen balances the various needs that people have to talk about vitamins, herbs, home remedies, and other alternatives while staunchly supporting a scientific approach to medicine that Osler would certainly applaud. It turns out that Tollen receives and circulates information about scientific discoveries related to MPD before it comes to the attention of all but the most specialized hematologists around the world.
There are many facets to any given community. Each participant in the calls seemed to bring out another one: Joitske Hulsebosch from The Netherlands, with an international development perspective; Sherry Spence, an epidemiologist from Colorado; Derek Chirnside, an instructional innovator from New Zealand; Etienne Wenger, a writer of books on communities of practice who asks very good questions; Sandra Walden Pearson, a social change agent from Australia. There were many others, whose names escape me, who helped reveal a very rich world inhabited by a retired man in Florida who’s figured out what works for his community.
Although an email list has been the backbone for the MPD-Support community since it graduated from a distribution list 12 years ago, Tollen uses a surprising array of auxiliary tools to support his community. In an “always on” Web 2.0 world of Frappr maps, it turns out there are a lot of email-based tools to send reminders (www.memotome.com), alerts (e.g., Google), etc. A real-life community is likely to depend on many different tools.
Where does an active support list like Tollen’s lead? Suddenly Tollen is speaking to physicians and researchers at a conference, he’s compiling a list of 400 frequently asked questions, he’s conducting the most detailed survey of people who suffer from the MPD diseases, and for the first time he may just be giving voice to a community with an “orphan disease,” which fortunately makes for a very interesting dozen episodes of CPsquare’s “Grand Rounds.”
