For anyone who has experienced a health event or chronic condition (or is close to someone who has), online patient communities are nothing new. When diagnosed with something unfamiliar and scary, it’s a natural impulse to look for information—and connection—on the Web.
At Health 2.0 in San Francisco last October, we heard from several speakers on this topic—folks from MyHealthTeams, which creates social networks for specific chronic conditions (like breast cancer and autism); HealthTap, which features more than 30,000 physicians answering questions online; and Audax Health – the company behind Zensey, an online product that combines social networks, expert panelists, and interactive tools for tracking your own medical/health/fitness data.
There are those who have reservations about online communities for patients. Physicians have expressed concern over patient privacy and physician liability. But for patients looking for details on what they can expect after diagnosis, or for people eager to share what they’ve learned in the process of illness, treatment and recovery, these websites can provide support, comfort and community.
Even with concerns about patients sharing information online, there are stories of great wins: According to a recent piece by The Atlantic, there are studies citing the benefits of online communities on quality of life and patient empowerment. And several patients with a rare condition found each other online and convinced a physician to conduct research they might directly benefit from. Amazing stuff.
For examples of established online patient communities, check out this starter list from health advocate and activist Dave deBronkart. (Check out e-Patient Dave’s website and story while you are there.)
