I was in Google searching tonight for something specific in the pre-crash BT archives...but alas, didn't find what I was looking for...darn it!

BUT, I did stumble upon this...fascinating!

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Part 1...Part 2 is below...content was too large for a single posting


What I've Learned from E-Patients

By: Dan Hoch, Tom Ferguson
Competing Interests: DH is a secretary for and TF is a director of the nonprofit organization BrainTalk Communities

Published: August 9, 2005
Last Modified: Friday, January 26, 2007 10:18:56 PM
Expires: Thursday, February 08, 2007 5:01:03 AM
(guess I found it just in time)

http://medicine.plosjournals.org/per...l.pmed.0020206

As a neurologist subspecializing in epilepsy at a respected academic institution, I (DH) assumed that I knew everything I needed to know about epilepsy and patients with epilepsy. I was wrong.

In September of 1994, John Lester, my colleague in the Department of Neurology at Massachusetts General Hospital, showed me an online bulletin board for neurology patients that he had created [1]. In reading through the online messages, I observed hundreds of patients with neurological diseases sharing their experiences and discussing their problems with one another.

I knew that many patients with chronic diseases had been making use of online medical information [2]. Nonetheless, I was shocked, fascinated, and more than a bit confused by what I saw. I'd been trained in the old medical school style: my instructors had insisted that patients could not be trusted to understand or manage complex medical matters. Thinking back through my years of training and practice, I realized that there had always been an unspoken prohibition against groups of patients getting together. I had the uncomfortable sense that by promoting interactions between patients and de-emphasizing the central role of the physician, I might be violating some deep taboo.

Remarkably Complex Stories

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]; http://patientweb.net), 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) (Figure 1) [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 (Table 1).

A Source of Information

Much of the information that the group provided to members was similar to what I routinely provided to my own clinic patients. So I was surprised to learn that many of the clinicians caring for group members provided considerably less information, guidance, and support. And some, apparently, provided none at all. Statements such as “My provider is too busy,” “My provider doesn't care,” or “My provider doesn't seem to know about such-and-such” were alarmingly common. About 10% of the members' posts spontaneously mentioned that they had been unable to get the medical information that they needed from their own clinicians. When we surveyed members directly, more than 30% said that they had been unable to obtain all the medical information they would have liked from their physicians (Table 2). This was a primary reason for many members' participation in the group.

Some other types of information, especially practical tips for living with epilepsy and the social aspects of the disease, went far beyond what I had been providing for my own patients. I am a board-certified epilepsy specialist at one of the most highly respected medical centers in the United States, yet I learned a great deal about these topics from the support group. I now share many of the things I learned from group members with my clinic patients.

The BrainTalk Communities epilepsy support group that we observed was facilitated by volunteer patient moderators, with little or no professional input. About 6% of the postings contained information that some of our medical reviewers considered at least partly mistaken, misinterpreted, outdated, or incomplete. We observed that other group members frequently corrected such misinformation. And group participants appeared to understand that they should not take uncorroborated statements as hard facts. They seemed well aware that some postings were erroneous, and in fact seemed to substantially overestimate the incidence of questionable materials.

We observed no serious problems as a result of these questionable postings, and saw many reports by patients who had obtained better care, prevented medical mistakes, or averted serious injury because of the information and advice they received from fellow group members. We concluded that, as Ferguson and Frydman have suggested, many professionals have seriously overestimated the risks and underestimated the benefits of online support groups and other online health resources for patients, probably because they do not operate within our familiar professionally centered constructs [9].