Top Things to Know: Principles for Health Information Collection, Sharing, and Use
Published: August 30, 2023
Prepared by Laurie P. Whitsel, PhD, FAHA
- Broad data collection and sharing can be a driver of progress by advancing health research, improving collaborations focusing on discovery, and creating a robust evidence base and informed health decision-making.
- Along with this promise comes valid concerns regarding the sensitive nature of some health data, equity considerations regarding the involvement of historically excluded communities, and the complex intersection of laws attempting to govern behavior in this space.
- Research with health information carries the extraordinary potential of improving health equity, but – to leverage this opportunity fully – stakeholders must also consciously contribute to the development of a governance architecture founded on inclusion and equity.
- Current health data privacy regulation has many limitations in coverage and allow for health data to be shared and used in ways that are surprising or not fully understood by the American public.
- Those who fund medical and scientific research should prioritize and support research generalizable to, or specifically designed for, historically underrepresented communities.
- Entities that collect health information and researchers who use it should be held to the highest standards of behavior including being respectful of the people from whom the data are derived and responsible stewards of this valuable common resource.
- Entities that collect health information and researchers who use it should be transparent about potential and actual future uses with patients and other data contributors.
- Awareness, education, and involvement of patients in minimal-risk research is encouraged to enable important future discoveries.
- Medical and scientific researchers, research institutions, and publishers should commit to making health-information derived research findings and innovations widely accessible, along with access to supporting data of sufficient quality to validate and replicate research findings, and data documentation that permits reuse and interoperability of the data.
- Federal law should provide a consistent baseline of protection and enforcement for individuals whose health information is collected and used.
Citation
Spector-Bagdady K, Armoundas AA, Arnaout R, Hall JL, Yeager McSwain B, Knowles JW, Price WN II, Rawat DB, Riegel B, Wang TY, Wiley K Jr, Chung MK; on behalf of the American Heart Association Advocacy Coordinating Committee. Principles for health information collection, sharing, and use: a policy statement from the American HeartAssociation [published online ahead of print August 30, 2023]. Circulation. doi: 10.1161/CIR.0000000000001173