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What I've Learned from E-Patients


Senior Member
Bay Area, California
Hello Fellow E-Patients. ;) I'm filing my Bookmarks and I came across this webpage and wanted to share it with all of you. It's interesting to hear what a doctor has to say about Online Medical Support Groups. Some quotes and then the link:

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.

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.

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 extended patient narratives—no two alike—
Just like snowflakes! :)
thus gave rise to an accumulated body of what my colleagues and I began to think of as an expert patient knowledge base.

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.

If more expert clinicians offered to consult informally with the online support groups devoted to their medical specialties—as I now do—we could help group members make information and opinion shared in these groups even better.

If this intrigues you read on here: http://www.plosmedicine.org/article/info:doi/10.1371/journal.pmed.0020206

And if you are unlucky enough to have a doctor who insists that you should not be in a Support Group or be looking your illness up online, hand him/her a copy of this article. ;)


All shall be well . . .
Santa Rosa, CA
more quotes from E-Patients article

Thanks teejkay. This is a very interesting article.

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. . . .

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.

Sounds a lot like this wonderful forum. Aren't we a fortunate bunch!!!


Thanks TeeJ

That was a heart rending read. It's interesting to note, the dozen or so doctors that do treat CFS are experts precisely because they have been having dialogues with patients for years thus, they have the benefit of vast experience gleaned through the patients.

It is a sad commentary on the American Medical Association that has advocated for years the training of doctors to distrust all patients, to maintain a superiority with the people they treat and to engage in generalizations about all populations. It makes for a body of untrustworthy, judgmental and static individuals so brittle in their thinking they can break but rarely bend.

It's wonderful that human nature can and does win out against propaganda and provide some wonderful doctors out there who believe in the patient and genuinely practice "first do no harm".

Someday I hope to meet one of them.


Senior Member
Thanks again Teej

Yes both fascinating and chilling...I guess we all knew that most doctors are trained not to trust us...It is pretty obvious!

But there are indeed a few who have stepped out of the mold. It must take guts. The peer pressure must be strong.


That's interesting! But I'm kind of surprised by this.

When my dad was diagnosed with diabetes ten years ago, his doctor advised him to go to a support group. The one he went to was sponsored by an insurance company. They would go to the supermarket with their leader to learn how to read food labels and choose diabetic friendly food. Mental illness and addiction treatment is commonly supplemented with group therapy.

Maybe that's really old thinking from the epilepsy specialist's medical school!

I was listening to NPR about doctors dealing with patients bringing in articles they read from the internet (Google University). Some of them didn't like it, but most welcomed an informed patient who is interested in his/her own health. They were more frustrated by people who didn't follow medical advice.