AHA releases new guidance for patient data use

With the increasing use of analytics, big data and artificial intelligence (AI) in research, the American Heart Association has released new policy guidance for the collection, storage, ethical use and sharing of patient data.

The association’s new policy statement, “Principles for Health Information Collection, Sharing, and Use”, published in the Association’s flagship, peer-reviewed scientific journal, emphasises that policies for patient data sharing should be interpreted and applied respectfully towards patients and research participants, equitable in impact both in terms of risks and potential benefits, and beneficial across broad and demographically diverse communities in the United States.

The statement outlines six new principles focused on “encouraging the generalisability of research advances, good stewardship across the translational spectrum, transparency, education and involvement of patients, access and privacy protections”.

“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, J.D., M.Be., Co-Director of the Center for Bioethics and Social Sciences in Medicine at the University of Michigan Medical School.

The statement outlines the following guiding principles with an aim to help protect the privacy of patients and bring clarity and regulation to a vast sector of a growing industry.

• Funders of medical and scientific research should prioritise and support research generalisable to or designed for historically underrepresented communities.
• Entities that collect health information and researchers who use it should be held to high standards of behaviour, including respecting 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 low-risk research is encouraged to enable important future discoveries.
• Medical and scientific researchers, research institutions and publishers should commit to making health information that is derived from 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.
   

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