Department of Medicine; Meyers Primary Care Institute
Health Policy | Health Services Research | Scholarly Communication | Scholarly Publishing | Science and Technology Policy
AIM: To understand stakeholders' views on data sharing in multicenter comparative effectiveness research studies and the value of privacy-protecting methods.
MATERIALS and METHODS: Semistructured interviews with five US stakeholder groups.
RESULTS: We completed 11 interviews, involving patients (n = 15), researchers (n = 10), Institutional Review Board and regulatory staff (n = 3), multicenter research governance experts (n = 2) and healthcare system leaders (n = 4). Perceptions of the benefits and value of research were the strongest influences toward data sharing; cost and security risks were primary influences against sharing. Privacy-protecting methods that share summary-level data were acknowledged as being appealing, but there were concerns about increased cost and potential loss of research validity.
CONCLUSION: Stakeholders were open to data sharing in multicenter studies that offer value and minimize security risks.
PCORnet, comparative effectiveness research, data sharing, distributed research networks, electronic databases, multicenter studies, privacy-protecting methods
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Open access. This work is licensed under the Attribution-NonCommercial-NoDerivatives 4.0 Unported License. To view a copy of this license, visit http://creativecommons.org/licenses/by-nc-nd/4.0/
DOI of Published Version
J Comp Eff Res. 2017 Sep;6(6):537-547. doi: 10.2217/cer-2017-0009. Epub 2017 Aug 14. Link to article on publisher's site
Journal of comparative effectiveness research
Mazor KM, Richards A, Gallagher M, Arterburn DE, Raebel MA, Nowell WB, Curtis JR, Paolino AR, Toh S. (2017). Stakeholders' views on data sharing in multicenter studies. Open Access Articles. https://doi.org/10.2217/cer-2017-0009. Retrieved from https://escholarship.umassmed.edu/oapubs/3230
Creative Commons License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 4.0 License.