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, Kathleen M.; Richards, Allison; Gallagher, Mia; Arterburn, David E.; Raebel, Marsha A.; Nowell, W. Benjamin; Curtis, Jeffrey R.; Paolino, Andrea R.; and Toh, Sengwee, "Stakeholders' views on data sharing in multicenter studies" (2017). Open Access Articles. 3230.
Creative Commons License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 4.0 License.