Stakeholders' views on data sharing in multicenter studies.
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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 & 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.
SUBMITTER: Mazor KM
PROVIDER: S-EPMC6022827 | biostudies-literature | 2017 Sep
REPOSITORIES: biostudies-literature
Publications
Stakeholders' views on data sharing in multicenter studies.
Mazor Kathleen M KM Richards Allison A Gallagher Mia M Arterburn David E DE Raebel Marsha A MA Nowell W Benjamin WB Curtis Jeffrey R JR Paolino Andrea R AR Toh Sengwee S
Journal of comparative effectiveness research 20170814 6
<h4>Aim</h4>To understand stakeholders' views on data sharing in multicenter comparative effectiveness research studies and the value of privacy-protecting methods.<h4>Materials & methods</h4>Semistructured interviews with five US stakeholder groups.<h4>Results</h4>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 ...[more]
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