UMMS Affiliation

Department of Medicine; Meyers Primary Care Institute

Publication Date

9-1-2017

Document Type

Article

Disciplines

Health Policy | Health Services Research | Scholarly Communication | Scholarly Publishing | Science and Technology Policy

Abstract

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.

Keywords

PCORnet, comparative effectiveness research, data sharing, distributed research networks, electronic databases, multicenter studies, privacy-protecting methods

Rights and Permissions

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

10.2217/cer-2017-0009

Source

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

28805448

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.

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