A new framework published in the New England Journal of Medicine could help them do so more responsibly, going beyond the minimum legal requirements and respecting patients by giving them more say in how their individual data may be used.
Written by a team from Michigan Medicine, the University of Michigan’s academic medical center -- one of the first to adopt such a framework, the authors lay out an approach already applied to thousands of U-M patients and research study volunteers, and dozens of projects.
Kayte Spector-Bagdady, J.D., M.Bioethics, chief of the research ethics service of the Center for Bioethics & Social Sciences in Medicine and faculty at Michigan Medicine, wrote the piece with fellow members of a special U-M committee that oversees the university’s process, including Sachin Kheterpal, M.D., M.B.A., associate dean for research information technology and a co-leader of U-M Precision Health, Ray Hutchinson, M.D., active emeritus professor of pediatrics and former associate dean for regulatory affairs, and Erin Kaleba, M.P.H., director of the office that oversees clinical research data, the UMMS Data Office.
Read the full article from the Institute for Healthcare Policy & Innovation here.
Questions about data sharing at Michigan Medicine? Click here.