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Stakeholders' views on data sharing in multicenter studies.
Journal of Comparative Effectiveness Research 2017 September
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.
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.
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