UPDATED APRIL 2015
This week, I watched Dave deBronkart’s presentation on TED Meet e-Patient Dave and as a result read a great deal about how patients are using social networking to heal. This presentation, along with new research recently released by Patients Like Me, is forging a whole new path in health care that is being driven my patients. While I have been a major advocate for both patient empowerment and the usefulness of belonging to a support group, social networking provides a very useful tool for people living with chronic and/or life threatening conditions.
Patients like Dave aren’t the only ones fueling this movement. Tom Ferguson, MD, has written about the “empowered medical consumer since 1975. In fact, he was the section editor for health, medicine and self-care for “The Whole Earth Catalogue.” He was also an early advocate for the development of on-line health resources and the new field of Health “Informatics.”
With more and more patients moving away from “content” sites, and choosing social media sites, medical centers are taking note. On July 5, 1911 the Mayo Clinic launched a social network site for patients and caregivers. Within the first seven days, they had 1,000 enrollees. Not limited to Mayo Clinic patients, the site is free and is open to anyone, not just those who have been patients at Mayo Clinic. It includes content from various Mayo Clinic blogs, health and medical videos from Mayo's YouTube channel and links to news articles about Mayo Clinic research and treatment advances, along with a member discussion forum. Clearly the e-patient is here and it wont be long before other medical centers will begin offering programs similar to what Mayo Clinic and Patients Like Me are offering. In fact, if you want to know how your hospital is doing as far as social networking, check out Found in Cache: Social Media resources for health care professionals.
Some take home points about being an E-patient:
• Keep a personal health notebook (be it on-line or written) and make sure you have “your data.”
• Participating in an on-line community can help you identify a variety of resources and treatments, to say nothing of emotional support. Don’t limit yourself to content sites only. Social networks are playing a very important role and will most likely play an even bigger one in the coming years.
• By sharing your data, as described in the Patients Like Me article, you can help to better determine what treatments might work for you as well for those with similar conditions.
• Use the same cautionary measures you would use on any social networking site (Facebook, Blog, Twitter etc.): Watch out for scammers; limit how much personal information that you share; be clear about what you want from the group.
• Share what you are learning with your medical provider. Many providers will welcome what you are learning, as they don't have the time to follow everything that happens on line.
Resources to check out:
• Health Central
• Shared Health Data: Design, Deliver, Better health with Your Own Information
• Patients Like Me: Includes 500+ conditions
• Society for Participatory Medicine The Society for Participatory Medicine is a 501(c)3 public charity devoted to promoting the concept of participatory medicine by and among patients, caregivers and their medical teams and to promote clinical transparency among patients and their physicians through the exchange of information, via conferences, as well through the distribution of correspondence and other written materials.
• e-Patients.Net Blog of the Society for Participatory Medicine
• Association of Cancer online Resources
• e-Patient Dave: A Voice of Patient Engagement
• Other on-line resources