Principles for Health Information Collection, Sharing, and Use: A Policy Statement From the American Heart...

Area of Science:

• Health Informatics
• Public Health Policy
• Data Science

Background:

• Advancements in electronic health records (EHRs) and data analytics facilitate health information sharing and harmonization.
• Analysis of health and health-proxy data accelerates research discoveries and enhances patient care.

Purpose of the Study:

• To outline policy principles for the American Heart Association regarding health data collection, sharing, and use.
• To address concerns regarding data sensitivity, equity for excluded communities, and legal frameworks governing health data.

Main Methods:

• Review of equity and legal considerations in health data sharing.
• Articulation of guiding principles for the American Heart Association's public policy engagement.
• Inclusion of policy application examples.

Main Results:

• Identified the need for data-sharing principles across various stakeholders (collectors, funders, researchers, patients, policymakers, industry, regulators).
• Outlined key equity and legal background relevant to responsible health data management.
• Proposed principles to guide policy development for respectful, equitable, and beneficial health information reuse.

Conclusions:

• Broad data sharing, guided by robust principles, is crucial for advancing health research and patient care.
• Policy must ensure health data use is respectful, equitable, and benefits diverse populations.
• The American Heart Association will use these principles to inform its public policy work on health data.