Statement highlights :
Embargoed until 4:00 a.m. CT/5:00 a.m. ET, Wednesday, August 30, 2023
DALLAS, August 30, 2023 — In an ever-evolving world of big data, more powerful analytics, and the application of artificial intelligence fueled in part by consumer, research and patient data, the American Heart Association, a global force for longer, healthier lives free of heart disease and stroke, has released new policy guidance for the collection, storage, ethical use and sharing of patient data.
While consumers and patients may be aware of social media companies' health information collection strategies and practices, many are unaware that health data collection and sharing can be tremendously valuable to advance health research, leading to new discoveries and enabling more informed health decision-making. The new American Heart Association policy statement, “Principles for Health Information Collection, Sharing, and Use,” published today in the Association’s flagship, peer-reviewed scientific journal, Circulation .
With these advances come concerns about privacy regarding the handling of sensitive health information, ensuring that research is also designed for or generalizable to historically excluded and underrepresented communities, and the network of complex laws attempting to govern this space.
“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.
As outlined in the statement, the following guiding principles will help to protect the privacy of patients and bring much needed clarity and regulation to a vast sector of a growing industry.
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About the American Heart Association
The American Heart Association is a relentless force for a world of longer, healthier lives. We are dedicated to ensuring equitable health in all communities. Through collaboration with numerous organizations, and powered by millions of volunteers, we fund innovative research, advocate for the public’s health and share lifesaving resources. The Dallas-based organization has been a leading source of health information for nearly a century. Connect with us on heart.org , Facebook , X or by calling 1-800-AHA-USA1.
Circulation
Principles for Health Information Collection, Sharing, and Use: A Policy Statement From the American Heart Association