Brian Loew*, Inspire, Princeton, United States Track: Practice Presentation Topic: Building virtual communities and social networking applications for patients and consumers Presentation Type: Oral presentation Submission Type: Single Presentation Building: Joseph B. Martin Conference Center at Harvard Medical School Room: A-Pechet Room Date: 2012-09-15 05:30 PM – 06:15 PM Last modified: 2012-09-11

If you are the presenter of this abstract (or if you cite this abstract in a talk or on a poster), please show the QR code in your slide or poster (QR code contains this URL).

Patients with the rare heart disorder SCAD (spontaneous coronary artery dissection) self-organized on one of our online support communities and began researching their condition several years ago. The patient-directed research drew the attention of the Mayo Clinic, which now is conducted a major SCAD study.

The women who banded together to focus attention on SCAD were able to not only because they are united through the online community, and also because they did not seek ermission to do so. Through the WomenHeart Support Community on Inspire, they identified their own symptoms and similarities, and called attention to their discoveries.

This is a success story about patients working in partnership with industry, not in defiance of it.

Another example of how engaged online communities are, demonstrating how they are a wellspring for research, occurred when we created a detailed survey recently for the Inspire/Encephalitis Global community in February 2012. The five board members of the nonprofit organization Encephalitis Global--themselves all survivors of encephalitis--developed the survey and analyzed the findings. Despite the complexity of the survey, and the impairments that a number of the members live with every day, we received over 250 completed responses (apx. 17% response rate), and created a special report.

H. Gordon Deen, M.D., professor of neurosurgery at Mayo Clinic, who reviewed the encephalitis data, said, "Like other rare diseases, it is difficult for the medical profession to study encephalitis using traditional research methods, because so few cases are seen at even the largest medical centers. Internet support groups are starting to play an increasing role in rare disease research. These groups are able to assemble large numbers of patients with the disease in question, and present themselves to medical researchers as potential study participants."

This presentation will examine these and other examples of patient-driven research.

We founded Inspire with the belief that patient contributions to medical progress have been historically under-appreciated, and great progress in medical research will result from involving patients and fully valuing their contributions. Our 100+ online support communities are some of the largest and most active of their kind--particularly in communities for people affected by rare diseases. We have more than 75 exclusive national patient organization partnerships and over 230,000 registered members worldwide.