How can social media impact treatment, research?

BOSTON--Roger Chafe, PhD, director of pediatric research at the Memorial University of Newfoundland, St John's, Newfoundland and Labrador, Canada, discussed the intersection of social media and more traditional media at the Medicine 2.0 Congress, and how both are impacting treatments and research.

For example, despite little clinical evidence or support for venoplasty to treat the symptoms of multiple sclerosis (MS), published information about a small trial of 65 patients in 2008 led to significant public debate about the treatment. Thousands of MS patients expressed their dismay on Facebook that the MS Society of Canada was moving too slowly on clinical trials for the potential treatment. Within days, the society reversed its position and requested research proposals.

In another example, Canadian wife and mother Jill Anzarut was diagnosed with HER-2 positive breast cancer with a tumor less than .5cm in size. She was denied coverage for Herceptin because her tumor was too small--Ontario guidelines indicated Herceptin for tumors 1cm or larger in size. Anzarut set up a Twitter account which generated numerous news articles about her plight. Eventually, a clinical trial for Herceptin’s effect on smaller tumors was set up.

“Social media allows patients a greater platform for challenging treatment coverage decisions and research priorities,” Chafe said.

Meanwhile, traditional media serves as a powerful gatekeeper of information by picking up stories from social media. The two “increase each other’s impact and impact each other’s content,” he said. Plus, social media is helping patients learn about new treatments much earlier in their development.