Sharing Biomedical Data – ICMJE Proposal and Responses Briefing

Note: This last week has been *highly* entertaining as I’ve been watching reactions and interactions surrounding a new proposal for sharing of clinical trial data.  I’ve sent this as a briefing around interested parties at my library and thought it might be useful if you’re trying to find the thread. My goal is to hit some of the major highlights. If there’s a particularly salient response I’m missing, please let me know! (As far as I know, all of these articles are available openly.)

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Last week the International Committee of Medical Journal Editors proposed new rules on data sharing for clinical trials. The statement that first caught my eye was a proposal for patient-level de-identified data to be shared within 6 months post-publication. There’s much more to it, of course, but that one was particularly of interest.

Full Text from Annals of Internal Medicine: http://annals.org/article.aspx?articleid=2482115&resultClick=3

“Sharing Clinical Trial Data: A Proposal From the International Committee of Medical Journal Editors”

This, rather promptly sparked a response from the EIC and an AE of NEJM which includes a description of those who reuse data as “research parasites”

As you can imagine, the editorial got a lot of attention– a couple of interesting blog posts on that front:

Which then meant by Monday there was a further editorial from the EIC at NEJM that sort of clarifies but also is broadsweepingly negative about data scientists

Again, there was response:

And on a more public side, this piece in NPR:

 

Now then, to start sorting what infrastructure and policy we’re going to need to meet these new requirements… get your comment in to ICMJE by April!