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    Date Issued2017 (1)AuthorArterburn, David E. (1)Curtis, Jeffrey R. (1)Gallagher, Mia (1)Mazor, Kathleen M. (1)
    Nowell, W. Benjamin (1)
    View MoreUMass Chan AffiliationDepartment of Medicine (1)Meyers Primary Care Institute (1)Document TypeJournal Article (1)Keywordcomparative effectiveness research (1)data sharing (1)distributed research networks (1)electronic databases (1)Health Policy (1)View MoreJournalJournal of comparative effectiveness research (1)

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    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 (2017-09-01)
    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.
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