Health Professionals Fear Web Sites That Support Theories on Mind Control – NYTimes.com
Health Professionals Fear Web Sites That Support Theories on Mind Control – NYTimes.com
This recent story really caught my attention. It’s the perfect example of “the double edged sword” in technology. Web 2.0 tools are increasinly bringing together patients to help support one another. Companies such as PatientsLikeMe and Inspire.com are two leading examples. These communities are powerful because patients are likely to trust people who are sharing the challenges of a similar disease or condition.
This story describes the use of online communities to bring together people who have psychotic and/or paranoid delusions. The patients do trust one another becuase of their shared condition, but it is serving to reinforce their paranoid delusions. Patients who used to feel like they were the only one who was constantly being stalked by a crowd of people, now find a community of people who have the same experience. They turn to the support of other paranoid people, eschewing the treatment and medications made available through their doctor.
Who’d have thought?
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This is definitely one of the biggest challenges of health 2.0 companies, and I can see why doctors and the medical community are nervous. However, the benefits outweigh the positive in most cases. I work for CureTogether.com, and although we may face similar fears in the future, we currently only share anonymous data (not stories or even the ability to share paranoia as with other organizations). This eliminates the discrepancy of personal bias and distracting sympathy, as the site just displays the facts of a condition (% of symptoms, causes, treatments, etc.) Instead of coping support, CureTogether is research based to provide “decision-support” for the patient, researcher, or doctor directly.
Thank you for bringing this topic to light!
Faren Inglett
http://www.curetogether.com