Every major medical center in America sits on a gold mine. The data they hold about their patients and research participants could be worth millions of dollars to companies that would explore it for clues that could lead to new medicines, medical technologies, health apps and more.
Such efforts would take partnerships between industry and academic institutions—which are already essential to medical innovation—to a new level.
Before COVID-19 struck, major health systems had started selling the “mining rights” to troves of their health data and stored materials—including details about patients’ DNA found in samples of their blood or tissue. Current law allows this, as long as names and identifying details are stripped from patients’ or research participants’ individual records and samples before turning them over.
Now that the pandemic has squeezed hospitals’ finances further, and increased the need for research on a grand scale, more medical centers may seek income from such ‘big data’ agreements with industry partners. That’s especially true for those whose patients also volunteer for in-house research studies.
But 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.
It was 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.
“We believe our approach provides an ethical way to advance medical discovery and innovation while also respecting the trust patients and research participants put in the University of Michigan,” says first author Kayte Spector-Bagdady, J.D., M.Bioethics, chief of