My initial doubts notwithstanding, I found dozens of well-informed, medically competent patients sharing information on a variety of topics. I was especially struck by the many stories recounting the development of a particular patient's illness, the patient's efforts to manage it, and the resulting interactions with health professionals. By telling their stories in such elaborate detail, experienced group members could offer a great deal of useful advice and guidance to those newly diagnosed, based on what they had learned in their own online research, what they had been told by their clinicians, and what they had deduced from personal experiences with the disease.
These “patient stories” often included a number of empowering elements that set them apart from the advice patients typically receive from their clinicians: role modeling by an active, critical, well-informed “expert patient” ([1
), comparative reviews and recommendations of clinicians and treatment facilities [2–5
], and advice about how to handle the practical details of living with a chronic illness [6
] (such as how to organize a home medical record, manage treatment side effects, find the best drug prices, and deal with less-than-perfect health professionals and health-care provider systems, and a wide variety of other topics relating to effective medical self-management). These extended patient narratives—no two alike—thus gave rise to an accumulated body of what my colleagues and I began to think of as an expert patient knowledge base. We concluded that these patient narratives could be invaluable resources for clinicians and researchers, interested in taking an in-depth look at the changing roles of patients and clinicians in the Internet age.
The constant outpouring of sympathy and support that we observed in interactions among community members surpassed anything a patient might conceivably expect to receive at a doctor's office. As Richard Rockefeller, President of the Health Commons Institute, has suggested, disease-specific online patient networks provide their members with an invaluable type of around-the-clock support that he has called the “chicken soup of the Internet” [7
Working with several colleagues, I initiated an observational study to analyze the ways in which E-patients were using this new medium. Since I am an epilepsy specialist, we decided to focus on an epilepsy support group at the site Lester had created, BrainTalk Communities (http://www.braintalk.org
) () [8
]. The BrainTalk Communities currently host more than 300 free online groups for neurological conditions (such as Alzheimer disease, multiple sclerosis, Parkinson disease, chronic pain, epilepsy, and Huntington disease) for patients across the globe. More than 200,000 individuals visit the BrainTalk Communities' Web site on a regular basis. This site is now owned and operated by an independent nonprofit group, BrainTalk Communities, and is no longer formally associated with Massachusetts General Hospital.
What we found surprised us. We assumed that most interactions would be support related, with some members describing their medical experiences and others offering active listening, sympathy, and understanding. But while such interactions were an important part of the group process, they were observed in only about 30% of the postings. In the remaining 70% of the postings, group members provided each other with what amounted to a crash course in their shared disease, discussing topics such as the anatomy, physiology, and natural history of the disorder; treatment options and management guidelines for each form of treatment; and treatment side effects, medical self-management, the day-to-day practicalities of living with the disease, and the effects of their condition on family and friends ().
BrainTalk Communities Online Epilepsy Support Group: Types of Questions Asked by Users