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J Comp Eff Res. 2017 Sep;6(6):537-547. doi: 10.2217/cer-2017-0009. Epub 2017 Aug 14.

Stakeholders' views on data sharing in multicenter studies.

Author information

1
Meyers Primary Care Institute, Worcester, MA 01605, USA.
2
Department of Medicine, University of Massachusetts Medical School, Worcester, MA 01605, USA.
3
Department of Population Medicine, Harvard Medical School & Harvard Pilgrim Health Care Institute, Boston, MA 02215, USA.
4
Kaiser Permanente Washington Health Research Institute, Seattle, WA 98101, USA.
5
Institute for Health Research, Kaiser Permanente Colorado, Denver, CO 80231, USA.
6
Global Healthy Living Foundation, CreakyJoints, Upper Nyack, NY 10960, USA.
7
University of Alabama at Birmingham, Birmingham, AL 35294, USA.

Abstract

AIM:

To understand stakeholders' views on data sharing in multicenter comparative effectiveness research studies and the value of privacy-protecting methods.

MATERIALS & 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

PMID:
28805448
PMCID:
PMC6022827
DOI:
10.2217/cer-2017-0009
[Indexed for MEDLINE]
Free PMC Article

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