Kathleen M Mazor1,2, Allison Richards1, Mia Gallagher3, David E Arterburn4, Marsha A Raebel5, W Benjamin Nowell6, Jeffrey R Curtis7, Andrea R Paolino5, Sengwee Toh3. 1. Meyers Primary Care Institute, Worcester, MA 01605, USA. 2. Department of Medicine, University of Massachusetts Medical School, Worcester, MA 01605, USA. 3. Department of Population Medicine, Harvard Medical School & Harvard Pilgrim Health Care Institute, Boston, MA 02215, USA. 4. Kaiser Permanente Washington Health Research Institute, Seattle, WA 98101, USA. 5. Institute for Health Research, Kaiser Permanente Colorado, Denver, CO 80231, USA. 6. Global Healthy Living Foundation, CreakyJoints, Upper Nyack, NY 10960, USA. 7. University of Alabama at Birmingham, Birmingham, AL 35294, USA.
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.
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.
Entities:
Keywords:
PCORnet; comparative effectiveness research; data sharing; distributed research networks; electronic databases; multicenter studies; privacy-protecting methods
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