Braintalk was featured........

Dan Hoch*, Tom Ferguson

Dan Hoch is an assistant professor of Neurology at Harvard Medical School, Boston, Massachusetts, United States of America. Tom Ferguson is a senior research fellow at the Pew Internet and American Life Project, Austin, Texas, United States of America.

Competing Interests: DH is a secretary for and TF is a director of the nonprofit organization BrainTalk Communities.

Published: August 9, 2005

DOI: 10.1371/journal.pmed.0020206

Copyright: © 2005 Hoch and Ferguson. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Citation: Hoch D, Ferguson T (2005) What I've Learned from E-Patients. PLoS Med 2(8): e206




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

Here's a snip. The full article is a worthy read.

Conclusions

Clinicians have overestimated the downsides, while seriously underestimating the benefits, of condition-specific online patient support communities. These free online resources now provide invaluable services 24 hours a day, seven days a week, for patients across the country and around the world. It would be unfortunate indeed if medical professionals let their uneasiness at this emerging trend toward patient empowerment and autonomy cloud their ability to assess the impressive benefits these groups provide.

Many patients are now ready, willing, and able to take a more active role in their own care, and the care of others with related diseases. By encouraging patients to do more for themselves and for each other, clinicians can help mitigate many of the negative effects of contemporary time-pressured medical practice. Thus, even though there may now be less time for the counseling, storytelling, support, information sharing, and empowerment-based training that was once a routine part of the typical office visit, we can now help our patients obtain such services by referring them to online patient networks.

The distributed expertise of online support groups is by no means limited to the emotional aspects of the illness and to the practical logistics of living with the disorder. It can also include current reviews of the literature, reports from the latest medical meetings, accounts of behind-the-scenes activities at the best treatment centers, sophisticated guidance on dealing with medical professionals, and excellent advice on dealing with complex aspects of medical management.

Few, if any, physicians could have created a system like BrainTalk Communities.

Finally, I have concluded that few, if any, physicians could have created a system like BrainTalk Communities. As a tech-savvy non-physician intimately familiar with both the inner workings of medical care and the power of information technology systems to create effective online communities, John Lester was less proprietary than most physicians are about medicine's proper professional “turf.” He was also less inhibited by professional biases regarding the potential value of the medical contributions that “unqualified” individuals might make. This is not an isolated occurrence. We suspect that the intensely professionally centered enculturation most physicians receive in their training and practice environments may render them, in the words of John Seely Brown and Paul Draguld, “blinkered if not blind” to the emergence of many promising new technocultural changes, which currently present new opportunities for health-care innovation [10]. Thus, physicians who seek to innovate in these areas might benefit greatly—as I have—from joining forces with Web developers, Net-savvy social scientists, experienced E-patients, and other colleagues unencumbered by the limiting belief systems that may result from our traditional medical training.

In light of their empowering social dynamics and volunteer economics, we suspect that patient-led online groups may prove to be a considerably more promising and sustainable health-care resource than professionally moderated therapy groups. And we are convinced that networked work teams linking patients, caregivers, and medical professionals will be an important model for future health-care innovation.

We are emerging as an empowered group of people with positive aspects to the medical community. It should trickle down to better medical care in our own communities.

These researchers have an interest in bettering their field, not guinea pigging us.

[Wittesea]

Interesting reading, and I'm glad that online support groups are finally being seen as an asset to patients....

... but it's a shame that anyone reading that article who tries to look into BrainTalk to see what it's all about will get an "oops it's broken message" instead of being able to see the great community that it was and can be again.

Hopefully the database isn't damaged and the volumes of medical information will still be there when John returns.

I was glad to see that doctors are also finding value from patient input. As most of us know, patients are usually given 10 mins of the doctors time on avg, and 1/2 the time we forget to ask the questions we intended. Sometimes being put off by feeling rushed by the staff, and other times not feeling comfortable asking the questions.

If the internet helps patient/doctor communication, it's well worth it.