Patient-Driven Content at

Derek Hansen, a fellow e-health researcher, wrote to me about his latest project and it fit so perfectly that I asked him to write it up for us — thanks, Derek!

Online support groups have long been recognized as an important and unique source of medical information and social support for patients.

Unfortunately, their knowledge is often buried in email list archives or bulletin board threads, making it difficult for newcomers and outsiders to benefit. Derek Hansen, Paul Resnick, and Sean Munson at the University of Michigan’s School of Information, are trying to change that by helping online support groups create community repositories using wiki software at

Their research has provided a few insights concerning these community

– Providing the wiki technology is only the start. The
challenge is encouraging widespread participation and assuring that the wiki and email list play a complementary role (see for specific suggestions on how this can be done).
– Community repositories can help improve the quality of
information because, unlike archived email messages, they are continually reused and easily updated.
– They are particularly useful at aggregating information from
different community members or from different websites scattered across the web. Many useful wiki pages have been collections of annotated pointers to other resources.
– They provide the key infrastructure for new forms of
collaboration. They help communities become collaborative authors and editors of important information resources, rather than simply commentators.

If you would like to know more about or are part of an online support group that would like to participate in the project, feel free to contact Derek Hansen at


Posted in: patient networks





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