According to Dr. Tom Ferguson, e-patients are “citizens with health concerns who use the Internet as a health resource, studying up on their own diseases (and those of friends and family members), finding better treatment centers and insisting on better care, providing other patients with invaluable medical assistance and support, and increasingly serving as important collaborators and advisors for their clinicians.”1
E-patients document their personal journeys on social media sites, blogs, and forums. They foster an open dialog via comments and offer support to those who need it. There are several online e-patient communities such as patientslikeme.com, inspire.com, curetogether.com, and e-patients.net. There are also dozens of disease-specific communities. This page has a good list of some of them.
Learning From E-Patients
Health educators can analyze user comments for insights on a certain health topic or disease and identify educational needs. They can then offer correct information and awareness of new treatments to large online patient communities.
In 1994, the Massachusetts General Hospital Department of Neurology studied how patients with neurological concerns were using online health resources. In an effort to provide a “home” for the scattered online groups that they found, the Brain Talk Communities site was created. John Lester, Department of Neurology IT Director, and his team asked the e-patients what they wanted and designed the system according to their suggestions. The team stood back and let the users take over the site – patients provided the content and made the rules. Currently, the site hosts more than 250 communities.2
Neurologist Dan Hoch, MD, Assistant Professor and co-founder of Brain Talk, says, “In retrospect, the most important thing I have learned from our online group was that patients want to know about, and in most cases are perfectly capable of understanding and dealing with, everything their physician knows about their disease and its treatments. After observing the group, I realized that I had been providing my patients with a very limited subset of what I knew about their condition. Today, there is nothing that I know about epilepsy that I would hesitate to share with a patient.”3
E-Patient Dave – A Voice of Patient Engagement
Dave deBronkart was diagnosed with stage IV kidney cancer in January 2007 – with a survival time of 24 weeks. After extensive treatment that reduced the cancer, his remaining lesions continued to shrink. Dave wrote blog posts during his illness and when he recovered, he created his own blog – The New Life of e-Patient Dave. He is a nationally known speaker, author and champion of patient engagement and opening health information directly to patients. In 2011, he gave a TED Talk, “Let Patients Help”.
Evidence points to better outcomes and care experiences for the engaged patient.4 When e-patients communicate with one another and share their experiences, new community members get support and information that will empower them to take an active role in their health care.
Interesting E-patient Articles and Resources:
- Journal of Participatory Medicine
- Excellent article written by a software programmer who creates tools for patients who want to be empowered – chock full of additional e-patient sites: radar.oreilly.com/2012/01/epatients-empowered-patients.html
- 15 Influential ePatients and Patient Advocates to Follow
- E-patients White Paper (PDF) by Tom Ferguson, MD
- The Empowered E-Patient Infographic – 2010
- “e-Patient White Paper” – Tom Ferguson, MD
- Learning from e-patients at Massachusetts General Hospital – John Lester, Stephanie Prady, Yolanda Finegan, Dan Hoch
- What I’ve Learned from E-Patients – Dan Hoch and Tom Ferguson
- The Blockbuster Drug of the Century: An Engaged Patient – Leonard Kish