The wisdom of patients (and dogma of Wikipedia)

In Web 2.0 & all that on April 25, 2008 by Alan Lovell Tagged: , , ,

A couple of health 2.0 stories. Wikipedia is getting criticised by because according to Wikipedia’s ‘guidelines’ (read ‘rules’) you’re not allowed to refer to patient groups, or any information from their websites etc, when editing Wikipedia articles. This seems a tad ironic, in that patient support groups are an example of wisdom of the crowds, for what such wisdom is worth, and so is Wikipedia. It seems a bit rich for the latter to ban the former…

“If you or a loved one suffer from a rare condition you should not consider any wikipedia article to be an inclusive source of information regarding that condition. Due to the strict editing guidelines of wikipedia, some of the most useful sources of hard to find information regarding your condition, including all patient communities, cannot be mentioned in any article. In conclusion, wikipedia articles should be neither the first nor the principal source of information to give to a newly diagnosed patient, since wikipedia doesn’t accept, in principle, mention of any patient-generated information because that information is not considered ‘authoritative'”

And if you are into the “wisdom of the patients” a report on the topic has just been published.

“The report details how innovative collaborations online are changing the way patients, providers, and researchers learn about therapeutic regimens and disease management. It examines the benefits and concerns regarding Health 2.0 and it also includes an extensive listing of health media resources.”

The full text is available here [PDF].


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