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.