The Aspen Health Strategy Group advances ideas for public and institutional policies and practices that respect patient autonomy and inform medical advances
Contact: Ben Berliner
The Aspen Institute
Washington, DC, March 9, 2023 — A new report released by the Aspen Health Strategy Group (AHSG), an initiative of the Aspen Institute, grapples with the urgent need to benefit from the health data now available on an unprecedented scale while ensuring that appropriate privacy safeguards are in place. “Protecting Health Data Privacy and Improving Patient Care” is the product of a year-long, in-depth study and the consensus of 18 senior leaders across the health care spectrum.
The report can be read online; a list of AHSG participants is included below.
“Our capacity to prevent, detect, and treat disease is being transformed by the data-driven knowledge we are collecting,” says AHSG co-chair Kathleen Sebelius, former US Secretary of Health and Human Services and former Governor of Kansas. “But we have to fully consider the legal, medical, and ethical questions that arise in order to use that data appropriately.”
Public trust is essential to data collection and analysis. “If people do not believe their health information is protected, they will withhold data, which would be a tremendous loss to research,” said AHSG co-chair William Frist, a physician and former US Senator from Tennessee and former Senate majority leader. “We need public policies that respect patient autonomy and informed consent.”
The report advances “Five Big Ideas” to ensure that data are used in service to medical advances while protecting the individuals who are the wellspring of that data:
- Congress should update federal health data privacy laws.
- Health data privacy laws should reflect social norms.
- All entities that hold health data should have clear policies.
- Health sector leaders should advance a new covenant of health data use.
- Consumer participation in health data privacy practices should become the norm.
The AHSG conversations and report were enriched by the participation of Jeri Lacks-Whye and David Lacks Jr., grandchildren of Henrietta Lacks, whose cancer cells demonstrated a remarkable ability to endure and reproduce and remain a mainstay of biological research to this day. Those cells were shared without her family’s knowledge or consent and vividly illustrate the complex issues confronted by the AHSG group.
Five themes emerged in the discussions that helped guide the development of the big ideas:
- The health data ecosystem is vast and growing rapidly.
- Current rules fail to protect health data privacy adequately.
- Safeguarding privacy is essential to realizing the benefits of health data use.
- Health data use creates benefits and harms that are inequitably distributed.
- Rules regarding health data privacy should consider the type of data and how and by whom the data will be used.
In its call to move forward, the report states, “Significant gains to human health are achievable if we harness the power of health data and rapidly improving analytics, yet current uses of health data go beyond what patients and consumers find acceptable. We must redesign our approach to health data privacy to honor the ethical value of privacy and to earn public support for using health data to positive ends.”
The following members of the Aspen Health Strategy Group participated in this report:
- Kathleen Sebelius, 21st US Secretary of Health and Human Services (2009-2014); former Governor, State of Kansas (2003-2009)
- William Frist, former US Senator, State of Tennessee (1994-2006); former US Senate Majority Leader (2003-2007)
- Richard Baron, President and CEO, American Board of Internal Medicine
- Richard Besser, President and CEO, Robert Wood Johnson Foundation
- Raphael W. Bostic, President and CEO, Federal Reserve Bank of Atlanta
- Gail K. Boudreaux, President and CEO, Evelance Health
- Dena Bravata, Healthcare Entrepreneur
- Rosalind Brewer, CEO, Walgreens Boots Alliance
- Toby Cosgrove, Executive Advisor and former CEO and President, Cleveland Clinic
- Deborah DiSanzo, President, Best Buy Health
- Victor Dzau, President, National Academy of Medicine
- David Feinberg, Chairman, Oracle Health
- Harvey Fineberg, President, Gordon and Betty Moore Foundation
- Helene Gayle, President, Spelman College
- Ai-Jen Poo, President, National Domestic Workers Alliance; Executive Director, Caring Across Generations
- David J. Skorton, President and CEO, Association of American Medical Colleges
- Antonia Villarruel, Dean, University of Pennsylvania School of Nursing
This is the seventh annual AHSG publication, following earlier reports on incarceration, the U.S. maternal mortality crisis, antimicrobial resistance, chronic disease, the opioid epidemic, and end-of-life care. The report was edited by Alan R. Weil, editor-in-chief of Health Affairs, and will be widely distributed to policymakers in health and related fields. AHSG members also commit to sharing the recommendations within their own institutions, organizations, and networks.
The mission of the Aspen Health Strategy Group is to promote improvements in policy and practice by providing leadership on important and complex health issues. AHSG brings together senior leaders representing a mix of influential sectors, including health, business, philanthropy, and technology, and is part of the Health, Medicine & Society Program at the Aspen Institute.
The Health, Medicine & Society Program at the Aspen Institute brings together influential groups of thought leaders, decisionmakers, and the informed public to consider 21st-century health challenges in the United States and around the world and to identify practical solutions for addressing them. The rigorously nonpartisan work spans a range of timely topics. At the heart of most of its activities is a package of research, convenings, and publications that supports policymakers, scholars, advocates, and other stakeholders in their commitment to better health for all.
The Aspen Institute is a global nonprofit organization committed to realizing a free, just, and equitable society. Founded in 1949, the Institute drives change through dialogue, leadership, and action to help solve the most important challenges facing the United States and the world. Headquartered in Washington, DC, the Institute has a campus in Aspen, Colorado and an international network of partners.