Part 2
What I've Learned
In retrospect, the most important thing I (DH) have learned from our online group was that patients want to know about, and in most cases are perfectly capable of understanding and dealing with, everything their physician knows about their disease and its treatments. After observing the group, I realized that I had been providing my patients with a very limited subset of what I knew about their condition. Today, there is nothing that I know about epilepsy that I would hesitate to share with a patient. For example, I now offer my patients an open and frank discussion of the very rare sudden unexpected death in epilepsy syndrome. I had previously not mentioned this rare but alarming complication, fearing that some patients might become overly concerned with it. But once I discovered that BrainTalk Communities group members discussed this topic quite openly and freely online, reviewing the scientific data in a sophisticated way, I began to share my knowledge on this topic with my clinic patients. My newfound frankness has been much appreciated. And none of my patients have become unduly troubled by these discussions.
I have also learned that an online group like the BrainTalk Communities epilepsy group is not only much smarter than any single patient, but is also smarter, or at least more comprehensive, than many physicians—even many medical specialists. While some postings do contain erroneous material, online groups of patients who share an illness engage in a continuous process of self-correction, challenging questionable statements and addressing misperceptions as they occur. And while no single resource, including physicians, should be considered the last word in medical knowledge, the consensus opinion arrived at by patient groups is usually quite excellent. And 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.
Growing numbers of patients are perfectly capable of empowering themselves.
I had been taught to believe that patients could only be “empowered” by their clinicians. And while I do believe that clinicians can help in this regard by sharing their knowledge openly and by encouraging patient self-reliance, it now seems quite clear that growing numbers of patients are perfectly capable of empowering themselves, with or without their clinician's blessing. Physicians and other health professionals should do all they can to support them in this worthy effort.
As a result of what we've learned from these online patient networks, our research group has developed a password-protected Web site, PatientWeb (
https://fisher.mgh.harvard.edu/), for the patients that we see in the clinic—all those patients with epilepsy who receive medical care at the Massachusetts General Hospital and Brigham and Women's Hospital. Thanks to what we have learned from these online groups, we plan to pilot new ways for private, local online groups made up of patients with the same disease and receiving care from the same clinicians to collaborate with each other, and with their clinicians, more effectively.
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.
Acknowledgments
This article was written collaboratively but presents DH's point of view and reflects his experience. The authors wish to thank and acknowledge John Lester, Stephanie Prady, and Joshua Fogel for reviewing earlier drafts of this article and offering helpful suggestions.
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Cited references above can be found via the URL in the article title area a the top of the post.
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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.
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. [At the time of publication in 2005]