FAQ

Frequently Asked Questions

Question

Answer

I find that my institution is paranoid about data sharing. We realize that if you want to continue to work with your healthcare partners, you may not be able to include some information, such as site, in cases where it would be possible to surmise which site is which. With pragmatic research, we are asking healthcare systems to disclose information that their competitors don’t have to disclose, which leaves the systems open for comparisons. On the other hand, if you don’t share all the data, then this limits the usefulness of them. For example, other investigators may not be able to use the data to replicate the trial. This is an evolving conversation; we want people to share as much as they can and still have the data be useful.

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Version History

Published December 17, 2018

Citation:

Data Sharing and Embedded Research: FAQ. In: Rethinking Clinical Trials: A Living Textbook of Pragmatic Clinical Trials. Bethesda, MD: NIH Health Care Systems Research Collaboratory. Available at: https://rethinkingclinicaltrials.org/chapters/dissemination/data-share-top/faq/. Updated January 4, 2019. DOI: 10.28929/105.