More than sympathy: Patients find collective voice for advocacy

Online support groups are gaining influence beyond their original mission of providing a virtual shoulder to lean on.

By Pamela Lewis Dolan, AMNews staff. Aug. 6, 2007.

When disease-specific support groups started leaving church basements and turning to the Internet, members found a few sympathetic ears could grow into national or international communities several thousand strong. More members meant more power. And, ultimately, more power meant more action.

Over the past decade, online patient groups have evolved from large communities of people sharing a common disease to even larger communities sharing a common goal: to help spread awareness and support for the treatment and cure of their respective conditions.

The evolution of the Assn. of Cancer Online Resources has become a typical example of this trend.

ACOR was founded in 1995 by Gilles Frydman after his wife, Monica, was diagnosed with the ductal carcinoma in situ type of breast cancer, shortly after recovering from a rare heart disorder.

Not satisfied with the answers his wife's doctor was giving them, Frydman turned to Internet groups for information. The groups he found convinced him that his wife needed a second opinion and also helped him find a new doctor. But, he found that navigating the boards was difficult and cumbersome. The idea of ACOR was to provide one-stop shopping for every type of cancer support group.

Now, due to its amplitude, ACOR has evolved from a patient resource to a source for researchers looking for clinical trial subjects; a directory of specialists, complete with firsthand critiques; and a large collection of cancer information and research. The group is now moving into fundraising.