Research Spotlight: Principles for Health Information Collection, Sharing, and Use

Antonis A. Armoundas, PhD, a scientist in The Cardiovascular Research Center is an author of a recently published policy statement, published in Circulation, entitled “Principles for Health Information Collection, Sharing, and Use: A Policy Statement From the American Heart Association”

What Was the Goal of the Policy Statement?

The evolution of the electronic health record (EHR), combined with advances in data curation and analytic technologies, increasingly enables data sharing and harmonization.

Advances in the analysis of health-related and health-proxy information have already accelerated research discoveries and improved patient care.

We wrote this American Heart Association policy statement to discuss how broad data sharing can drive progress by providing data to develop, test, and benchmark innovative methods, scalable insights, and potential new paradigms for data storage and clinical workflows.

What Motivated You to Write the Policy Statement?

Along with these advances come concerns about the sensitive nature of health data, equity considerations regarding the involvement of historically excluded communities and the complex intersection of laws attempting to govern behavior.

The AHA is the nation’s oldest and largest voluntary health care organization dedicated to reducing cardiovascular disease and supports innovative and cutting-edge research applicable across diverse communities.

Given the promise of big data research as well as the potential of artificial intelligence applications, supporting the broad use of health information for research can make great strides in achieving these goals. However, there are also potential concerns for this expanding use, including for individual privacy and equity considerations across diverse communities.

What are the Key Takeaways?

Data sharing and use must be done with a recognition of the obligations of contributors, journals, researchers and funders within the context of the larger policy ecosystem. The six principles we presented will guide the AHA’s work across the changing landscape of policy and systems in terms of health information collection, sharing, and use to ensure respect for contributors, equity in impact of risk, and benefit across broad and demographically diverse communities in the United States.

About the Massachusetts General Hospital

Massachusetts General Hospital, founded in 1811, is the original and largest teaching hospital of Harvard Medical School. The Mass General Research Institute conducts the largest hospital-based research program in the nation, with annual research operations of more than $1 billion and comprises more than 9,500 researchers working across more than 30 institutes, centers and departments. In July 2022, Mass General was named #8 in the U.S. News & World Report list of "America’s Best Hospitals." MGH is a founding member of the Mass General Brigham healthcare system.