The Patient Dialogue Speeds Up

Social media is having a major impact on the speed of information delivery to patient communities and health advocacy groups.

For many years, according to Gil Bashe, the well-respected leader of Makovsky’s health practice, they participated in organized letter- or email-writing campaigns on policy issues, research updates and best-practice guidelines. Support groups for patients and families were also created. The basic needs have not changed; however, today, social media accelerates the speed and global reach of these efforts. Bashe cites examples:

- DIABETES: Diabetes Social Media Advocacy group, organized on Twitter (and denoted by the hash tag #dsma), meets virtually every Wednesday night at 9pm to discuss questions, experiences and concerns via Q&A in Tweet form. One member writes, "I've found that it's difficult to talk with people who don't have diabetes about living with the disease because they mostly just don't 'get it'. This type of forum and community brings together people that are living with the same disease and can totally relate to the issues you may have." This type of network is more than peer support -- it creates a group who can be reached at a moment's notice for an advocacy-related call-to-action.

- HEART/STROKE: The American Heart Association has created more than 20 twitter accounts dealing with a wide-range of clinical and policy issues that it is seeking to mobilize advocacy around. It is also creating and seeking LinkedIn community members.

- ONCOLOGY: The Stand Up To Cancer campaign used its Facebook page, with more than 572,000 fans, to publicize fundraising efforts around World Cancer Day (February 4, 2011), as well as to stimulate discussion and share patient stories

- MS: Also on Facebook, the Touched By MS page features patients asking one another for advice, venting their frustrations, and sharing resources.

Despite the above, Bashe warns online patient communities have to be cautious, as they face the risk of inaccurate, unverified health information. A recent study by Children's Hospital Boston Informatics Program found that social networking sites for diabetes patients varied in the quality of information provided and the safeguards taken to protect patient privacy. In fact, only 50 percent of the sites presented content consistent with diabetes science and clinical practice (see here).

Bashe concludes what was once a passive way to express information has become the active method to mobilize around shared issues and needs --- very quickly and en masse.