There are definitely a lot of patient communities based on stories and support. But there are very few patient websites based on data. CureTogether is a data-driven site, bringing people with different conditions together to compare symptoms and treatments in a quantitative way.
Indeed: putting that data together in a way that is useful to researchers is an important task, even if not truly collaborative in the open source sense.
Hi Glyn,
ReplyDeleteThank you for making the distinction between open source and crowdsourcing. I'm looking for a good resource comparing the two in detail. Do you know of anything? I remember Jeff Howe talking about it at one point but I didn't find it on his blog.
Thanks for your positive comments about CureTogether, too!
Best,
Alexandra Carmichael
Co-Founder, CureTogether
Unfortunately both terms are used very loosely; I'm not aware of any good single resource comparing them.
ReplyDeleteSorry - and good luck with your work.