Learning from e-patients at Massachusetts General Hospital

Patients and their care givers have created an impressive array of online health resources. Can healthcare professionals tap into them? In 1994, as a part of an initiative by the department of neurology of the Massachusetts General Hospital to develop promising new ways of using information technology, we began to study how patients with neurological concerns were using online health resources. To our surprise, we found that thousands of patients and their care givers had already created an impressive variety of online health resources. The online support groups, each devoted to a single neurological condition, were especially intriguing. The opportunities that these electronic groups offered for meeting members' needs were more convenient, powerful, and complex than anything we had seen in face to face support groups. For example, patients attending medical centres around the world could compare the treatments their clinicians had recommended. Participants found it easy to send complex medical information (medical journal articles, research reports, etc) to other patients, complete with links to yet other sources. But the groups we observed were scattered and uncoordinated. And although groups existed for most of the common neurological concerns, patients with uncommon conditions had no way of finding one another. We decided that our team of e-health researchers might be able to help—by providing better “homes” for existing support groups, and by encouraging the formation of needed groups. So in March 1995 the hospital's neurology service instituted a family of online groups called the Brain Talk Communities (http://www.braintalk.org/) to support e-patients with neurological concerns. Most medical professionals who have set out to develop online resources for patients have created applications and content in a “top down” manner, directed by health professionals. Within such systems, end users (patients, their care givers, and their family members) usually have little or no input or …