Stakeholders' views on data sharing in multicenter studies
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Updated: Feb 24, 2026

Digital Home-Monitoring of Patients after Kidney Transplantation: The MACCS Platform
Published on: April 12, 2021
Kathleen M Mazor1,2, Allison Richards1, Mia Gallagher3
1Meyers Primary Care Institute, Worcester, MA 01605, USA.
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.
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