Stakeholders' views on data sharing in multicenter studies
Mazor, Kathleen M. ; Richards, Allison ; Gallagher, Mia ; Arterburn, David E. ; Raebel, Marsha A. ; Nowell, W. Benjamin ; Curtis, Jeffrey R. ; Paolino, Andrea R. ; Toh, Sengwee
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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.
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