This morning’s NPR story, “Patients Turn to the Internet for Health Information,” featured data from my e-patients report, but also some research that has been conducted at the Center for Health Enhancement Systems Studies (CHESS) at the University of Wisconsin. CHESS researchers Robert Hawkins and Suzanne Pingree talked about how breast cancer patients in their study seemed to benefit from being directed to doctor-approved health information online.
If you are interested in learning more about such doctor-directed health information sources, I recommend looking into the Center for Information Therapy, as well as some health search engines, like Organized Wisdom, Kosmix, Healia, Healthline, Mamma Health,and Medstory.
But I’m also interested in people’s opinions about the open internet vs. closed systems. Our research shows that most people just use a general search engine when they have a health question, but many report feeling overwhelmed by what they find. What’s the trade-off? What other resources are out there for e-patients?
Susannah, this is a big issue, obviously. There is no one answer on how to find the right medical information at the right time, but I’m convinced of a couple of things: 1. the “wisdom of crowds” is an essential complement to search engine overload. People are turning to one another in many spheres of their lives to get reliable information and filter out the noise. It holds true with health information, as well. 2. Web 2.0 capabilities that are being used on sites and social networks throughout the Web could really bring the chat room/list.serv conversation to a new level. Why not tagging clouds to identify key issues on the minds of e-patients with a common condition? How about social tagging to flag sites, articles, etc. that are particularly useful?
I have NOTHING against doctor-directed sites. However, I do think that the wisdom of patients is undervalued and under-used on the Web, and that doctors themselves would do well to engage us in conversation, not just deliver to us what they already know.
Judy