학술논문

Stakeholders’ views on data sharing in multicenter studies
Document Type
Article
Source
Journal of Comparative Effectiveness Research; September 2017, Vol. 6 Issue: 6 p537-547, 11p
Subject
Language
ISSN
20426305; 20426313
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.