American Heart Association Releases Guidance for Patient Data Sharing

The American Heart Association (AHA) released new policy guidance in Circulation this week outlining six principles for patient data sharing in medical research.

The statement emphasizes that EHRs, alongside advances in data and analytics capabilities, enable increased data sharing and harmonization opportunities for medical researchers. These have resulted in accelerated discoveries and breakthroughs that have led to improved patient care, but the guidance notes that privacy, equity, and regulatory concerns that have come with these advances must be addressed.

The statement indicates that to tackle these concerns, stakeholders must prioritize protecting patient privacy while pursuing high-quality medical research.

The AHA outlines six principles for patient data sharing to help achieve these aims:

• Entities funding scientific and medical research are encouraged to support and prioritize projects designed for or generalizable to historically underrepresented communities;
• Entities and researchers that collect and use health information must be held to high standards, including acting as stewards and respecting the individuals from which the data were collected;
• The above parties should be transparent regarding potential and actual uses of the data with those who contributed said data;
• Efforts to increase awareness, education, and involvement in low-risk research should be encouraged to facilitate important future breakthroughs;
• Researchers, institutions, and publishers are encouraged to make health information from research findings, including supporting data and data documentation, widely accessible to enable validation and replication research;
• And federal law should establish protection and enforcement baselines for those whose health information is collected and used.

“The goal of these principles is to improve policy to support the use or reuse of health information in ways that are respectful of patients and research participants, equitable in impact in terms of both risks and potential benefits, and beneficial across broad and demographically diverse communities in the United States,” the statement notes.

The statement also indicates that these principles will guide the AHA’s public policy efforts related to data collection, sharing, and use, in addition to informing the organization’s research.

“These new principles regarding health information collection, sharing and use will inform the Association's public policy work and commitment to life-saving research, and underscore the need for transparency, privacy, education and a commitment to health equity across the data sharing spectrum," said Kayte Spector-Bagdady, JD, MBe, co-director of the Center for Bioethics and Social Sciences in Medicine at the University of Michigan Medical School, in the press release published alongside the policy guidance.