John Novack, from Inspire.com, a place that organizes online patient communities around various diseases and conditions, sent me this link to a great online report entitled, "The SCAD Ladies Stand Up: Stories of Patient Empowerment."
From the introduction:
The “SCAD Ladies” story is an extraordinary one: women with a rare heart disease self-organized online and began studying their disorder. This patient initiated effort led to physicians at the Mayo Clinic launching new research to learn more about spontaneous coronary artery dissection (SCAD).
The first essay is by Sharonne Hayes, a Mayo doctor, who notes:
Enter “patient-initiated” research. Still in its infancy, this may prove to be the new “gold standard” for the study of uncommon medical conditions.
It stands to reason that the people most highly motivated to support or to even initiate investigations of a rare condition are those personally affected and their close relatives. Our experience with the “SCAD ladies”, Katherine Leon and Laura Haywood-Cory and their online “heart sisters”, provides an example of successful patient-driven, social networking–enabled research. Our pilot and ongoing studies demonstrate that if a large organized group of patients self-identify and present themselves to researchers as study participants, a major barrier to rare disease research can be eliminated.
Delivering a patient-prioritized research agenda to potential investigators, as was done by the SCAD group, also may serve as an incentive for busy clinician-investigators and help convince them to commit to a new line of research or to this unfamiliar study methodology. Many organized patient advocacy groups have developed research agendas. However, the highly engaged and committed women who prompted the SCAD study, linked only via the Internet, demonstrated levels of sophistication and specificity in their patient-initiated research questions that were on par with those developed by formally organized groups. They had clearly done their research, and as a result, allowed this researcher to more clearly visualize the potential of success.
Check out the other essays from patients, which follow in the report. They are well worth reading.