UMMS Affiliation

Department of Medicine; Meyers Primary Care Institute

Publication Date


Document Type



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

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/Book/Conference Title

Journal of comparative effectiveness research

Related Resources

Link to Article in PubMed

PubMed ID


Creative Commons License

Creative Commons Attribution-Noncommercial-No Derivative Works 4.0 License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 4.0 License.