Elevating Patients as Partners in Management of Their Health Data and Tissue Samples

Authors: Catharine Young and Alicia Sikiric


From HIPAA to doctor-patient confidentiality, the U.S. healthcare system is replete with provisions designed to ensure patient privacy. Most people are surprised, then, to hear that patients in the United States do not legally own nearly any of their health data: data as diverse as health and medical records, labs, x-rays, genetic information, and even physical specimens such as tissue and blood removed during a procedure. Providing patients with agency over their health data is necessary for elevating patients as partners in their own health management—as individuals capable of making genuinely informed and even lifesaving decisions regarding treatment options.

The next administration should pursue a two-pronged approach to help do just that. First, the administration should launch a coordinated and comprehensive patient-education and public-awareness campaign. This campaign should designate patient data and tissue rights as a national public-health priority. Second, the administration should expand provisions in the Cures 2.0 Act to ensure that healthcare providers are equally invested in and educated about these critical patient issues. These steps will accelerate a needed shift within the U.S. healthcare system towards a culture that embraces patients as active participants in their own care, improve health-data literacy across diverse patient populations, and build momentum for broader legislative change and around complex and challenging issues of health information and privacy.

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About the Author

Dr. Catharine Young is the Executive Director of the SHEPHERD Foundation, an organization seeking to revolutionize the rare cancer system. Prior to this position, Catharine served as the Senior Director of Science Policy at the Biden Cancer Initiative, a philanthropic extension of Vice President Biden’s stewardship of the Cancer Moonshot. Catharine has also served as the Senior Science & Science Policy Advisor for the British Embassy and UK Ambassador. Her U.S. government work includes serving in the Department of Defense, Chemical, Biological and Nuclear Warfare Division as an AAAS Science and Technology Policy Fellow.

Alicia Sikiric is a graduate student at the Harvard Kennedy School with an interest in health policy. Before graduate school, she was a management consultant at McKinsey & Company, where she primarily served health systems and pharmaceutical companies and conducted due diligence on pharmaceutical assets. Before consulting, Alicia worked at a provincial government cancer agency, Cancer Care Ontario (now Ontario Health), in a project-management capacity across the agency’s Cancer Screening, Analytics & Informatics, and Clinical Programs portfolios. She holds an honors bachelor’s in health sciences from McMaster University and a master’s in management from Western University.