Public Engagement: Autoimmune Diseases and Patient Advocacy

A supplement to the May 2007 issue of TheScientist that just landed in my mailbox deals with "Autoimmunity: Diseases, Mechanisms, and Therapies". The scientific and medical challenges associated with autoimmune diseases (roughly 80 have been identified) are enormous, and it's asserted in the leading editorial that "the overall price tag for treating autoimmune diseases approximates that of cancer and heart disease. What is more, the chronic nature of autoimmune diseases drags whole families into crisis."

Perhaps it's this last factor---the devastating effects on families---that leads to the remarkable number of organizations for specific autoimmune diseases. The last two pages of the supplement list 24 such organizations---a "sampling of international associations, foundations, and societies"---largely organized and funded by patients and their families, that fund research, disseminate information, advocate for services, and even publish medical journals. A sampling of the sampling's web sites

shows the scope and influence of these organizations on the research and treatment of these diseases. Much of the research, and a good deal of the treatment, is done in university medical centers; but it is clear that these activities are strongly influenced by these public patient advocacy groups.

It's an important---if not always recognized---example of public engagement as defined by the CIC Committee on Engagement (2005): "Engagement is the partnership of university knowledge and resources with those of the public and private sectors to enrich scholarship, research, …"