Hospitals Sharing Patient Data and Biospecimens with Commercial Entities: Evidence-Based Translation to Improved Practice

Background: Widely sharing patient data and biospecimens can enable life-saving advances in translational science. Hospitals and commercial entities focusing on precision medicine and other genetic and artificial intelligence technologies have increasingly partnered to share these data resources. To ensure scientific advances, datasets must include patients reflecting different diseases. However, our previous research demonstrates that many patients are uncomfortable with hospitals sharing their data with industry and consistently report discomfort. We need to measure patient responses to actual hospital data-sharing practices to identify promising areas for compromise. Approach: The goal of this proposal is to identify areas for compromise between patients and hospitals to improve data-sharing practices with industry in ways that are respectful of individual patient autonomy. Impact: Patient discomfort with hospital data sharing practices is a significant problem for translational science advances. Though our mixed methods ELSI approach to discovering areas for compromise between hospitals and patients, this proposal will have a major impact on improving data-sharing practices to support high-impact translational science.