January 31, 2022
Health data sharing: NAM report features members' work
A new National Academy of Medicine Special Report features Michigan Medicine's health data-sharing approach as a case study, thanks to the work of several IHPI members.
Called Sharing Health Data: The Why, the Will, and the Way Forward, the special report aims to "identify and describe exemplar groups to dispel the myth that sharing health data more broadly is impossible and illuminate the innovative approaches that are being taken to make progress in the current environment. It also serves as a resource for those waiting in the wings, showing how barriers were addressed and harvesting lessons and insights from those on the front lines."
The NAM team interviewed three IHPI members who have been integral to Michigan Medicine's approach:
- Sachin Kheterpal, MD, MBA, Associate Professor of Anesthesiology and Associate Dean for Research Information Technology
- Kayte Spector-Bagdady, JD, MBE, Assistant Professor of Obstetrics and Gynecology and Associate Director of Center of Bioethics and Social Sciences in Medicine;
- Brahmajee K. Nallamothu, MD, MPH, Professor in Division of Cardiovascular Diseases and Department of Internal Medicine and Co-Director of Precision Health
The report's takeaways about Michigan Medicine's approach are:
Key Barriers Addressed
• Current regulations for protecting study participants have not kept pace with contemporary and
emerging data-sharing trends
• Participants input into how their data are used in a research context
Specific Solutions for Data Sharing between Patients and Clinicians
• Develop transparent processes for governance and oversight of research data applying insights from
research participants
• Promote policies that prioritize sustaining trust, rather than prioritizing data sharing and commercialization
Insights for the Field
• Continue studying and improving the informed consent process
• Seek opportunities to align biorepository policies and practices across the research enterprise
Spector-Bagdady and colleagues recently published a paper in Health Affairs regarding the discovery of racial and socioeconomic bias in the recruitment of participants to a large health research database involving Michigan Medicine patients, and she recently appeared on a Health Affairs podcast to discuss it further.
