My only concern was Dr. Suler’s comment implying that the lack of professional moderation for many online self-help groups leads to misinformation. Yes, professional moderation can be helpful to countering inaccurate information. But there will never be enough professionals with an interest and willingness to volunteer in support of patient-run online communities.

Also, professional control of online groups can sometimes hinder patients from recognizing how they can: help each other in special ways no one else can; pool their shared and helpful experiential knowledge together for new practical ways of coping with their adversity on a 24/7 basis; and express their healthy scepticism for a healthcare system that is too often unhealthy, uncaring, and not a system.

I believe that working together in large online groups, informed consumers can and do sort out falsehoods from the empirically helpful. Partnerships with professionals is extremely helpful. But we need to recognize that people can look and decide for themselves what information is most appropriate to their needs.

“Online patient groups have become an increasingly powerful force for health-care consumers over the past decade, raising funds for research and offering patient information and support. Now, as the cumulative power of their memberships grows, these groups are becoming invaluable partners to researchers and physicians searching for cures.”
- Wall Street Journal article on “The Growing Clout of Online Patient Groups” June 13th, 2007, p. D-1,