Exploring Trust, Technology, and AI in Healthcare Data Sharing: Insights from the CRA-I Workshop
CRA-Industry (CRA-I) recently hosted a Sharing Healthcare Data workshop in October in Washington, DC. Over 35 healthcare professionals, academics, industry leaders, and government representatives convened to explore the intersection of healthcare data sharing, trust-building, and the evolving role of AI in patient care. The discussions highlighted crucial themes of inclusivity, patient-centered innovation, and the vital need for diverse perspectives to shape the future of healthcare data. The full agenda is available here. This workshop is spun off of the very successful CRA-I Sharing Healthcare Data Roundtable in December 2023.
The workshop was honored to feature keynote speakers Deborah Estrin from Cornell Tech and Tom Kalil from Renaissance Philanthropy. Estrin presented on Patient-Generated Data Sharing: Advancing Hybrid, Longitudinal Patient Care with Digital Biomarkers and Therapeutics (DBx, DTx), emphasizing the potential of patient-generated data in shaping comprehensive care. Kalil focused on the need for concrete, actionable steps in policy, urging the identification of specific data needs and detailed, agency-specific recommendations for policymakers.
A key theme that emerged throughout the workshop was trust in healthcare data sharing, particularly for underserved communities. While technology can improve access, culturally competent, human-centered approaches remain essential for building lasting trust. Some challenges in this field that were brought up include regulatory, legal, and consent barriers, as well as the need for clear AI policies in healthcare.
The workshop emphasized that transforming healthcare data sharing, while achievable, requires thoughtful approaches. By expanding stakeholder involvement, refining data-sharing policies, and supporting ongoing innovation, we can create a healthcare ecosystem that respects patient autonomy and serves the needs of all. Moving forward, our efforts should aim to build frameworks that not only advance healthcare technology but also ensure it is used responsibly, fairly, and in a way that fosters trust across all communities. Please keep an eye out for the workshop report, which will be posted here, in the next few months.
