Consumer trust

FederalStatePrivate Sector

Policymakers and the private sector should explore opportunities to build trust in efforts to encourage health data-sharing to benefit health research that promotes the greater public good. This includes outreach to underserved communities to ensure that all groups are appropriately represented in data. In seeking to include traditionally underserved communities, researchers must recognize and address long-standing mistrust of research studies and the health care system.  

Health-research studies should limit the collection of personal health data to the information necessary to make the product, service, or research project work. Personal data must be obtained by lawful and fair means and with the knowledge and consent of the data subject. 

Researchers who access large government-owned or government-funded health-research databases must agree to meet rigorous standardized guidelines for data privacy. They should prioritize research on advancing health care quality and health outcomes, particularly those that address disparities and social determinants of health.