Principles for Health Information Collection, Sharing, and Use: A Policy Statement From the American Heart Association
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Published:2023-09-26
Issue:13
Volume:148
Page:1061-1069
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ISSN:0009-7322
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Container-title:Circulation
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language:en
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Short-container-title:Circulation
Author:
Spector-Bagdady Kayte,Armoundas Antonis A.,Arnaout Rima,Hall Jennifer L.,Yeager McSwain Brooke,Knowles Joshua W.,Price W. Nicholson,Rawat Danda B.,Riegel Barbara,Wang Tracy Y.,Wiley Kevin,Chung Mina K.,
Abstract
The evolution of the electronic health record, 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. This American Heart Association policy statement discusses how broad data sharing can be an enabling driver of progress by providing data to develop, test, and benchmark innovative methods, scalable insights, and potential new paradigms for data storage and workflow. Along with these advances come concerns about the sensitive nature of some health data, equity considerations about the involvement of historically excluded communities, and the complex intersection of laws attempting to govern behavior. Data-sharing principles are therefore necessary across a wide swath of entities, including parties who collect health information, funders, researchers, patients, legislatures, commercial companies, and regulatory departments and agencies. This policy statement outlines some of the key equity and legal background relevant to health data sharing and responsible management. It then articulates principles that will guide the American Heart Association’s engagement in public policy related to data collection, sharing, and use to continue to inform its work across the research enterprise, as well as specific examples of how these principles might be applied in the policy landscape. 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.
Publisher
Ovid Technologies (Wolters Kluwer Health)
Subject
Physiology (medical),Cardiology and Cardiovascular Medicine
Reference76 articles.
1. American Heart Association. Intellectual property policy for research funding. 2022. Accessed October 4 2022. https://professional.heart.org/en/research-programs/aha-research-policies-and-awardee-hub/policies-governing-all-research-awards
2. American Heart Association. Open science policy statements for AHA funded research. 2022. Accessed October 4 2022. https://professional.heart.org/en/research-programs/aha-research-policies-and-awardee-hub/policies-governing-all-research-awards
3. Governance of a Learning Health Care System for Oncology: Patient Recommendations
4. National Institutes of Health. Final NIH policy for data management and sharing. 2020. Accessed January 25 2022. https://grants.nih.gov/grants/guide/notice-files/NOT-OD-21-013.html
5. The case of rights-encumbered biomedical data silos.;Rai AK;Notre Dame Law Rev,2017