About Patient Privacy Rights
Since 2004, Patient Privacy Rights has been an independent public-interest organization advancing patient privacy through research, policy, and accountability.
Our Mission
When you can't trust that your health information is safe, you might hide symptoms or avoid getting care. Privacy has been the foundation of the doctor-patient relationship for thousands of years — and it's under threat.
We advance every person's right to control their personal health information. We protect people from health data harms by conducting research, educating the public, and holding organizations accountable for the responsible collection, use, and sharing of health information.
Key Objectives
- Give you real control over who sees your health data
- Make hospitals and insurers accountable for how they use it
- Set clear standards for what counts as real data protection
- Ensure you understand what you're agreeing to before you sign
- Push for stronger laws through research and advocacy
Our History
Patient Privacy Rights founded by Dr. Deborah C. Peel
Coalition for Patient Privacy launched with 50+ organizations
Achieved 501(c)(3) nonprofit status
Secured major protections in the HITECH Act
Launched the International Summit on the Future of Health Privacy; helped develop Texas HB 300
Inaugurated Louis D. Brandeis Privacy Award
Introduced the Top Data Detective Award
Dr. Latanya Sweeney becomes PPR's second president
Leadership
Latanya Sweeney, PhD
President
In 2025, the Board of Patient Privacy Rights ushered in a new era of leadership by electing Dr. Latanya Sweeney as the organization's second president. A pioneer in both the fields of data privacy and in algorithmic fairness, Dr. Sweeney brings deep expertise, visionary thinking, and a long-standing commitment to empowering individuals through data transparency and accountability.
Deborah C. Peel, MD
Founder & President Emeritus
Dr. Deborah C. Peel served as the founding President of Patient Privacy Rights from 2004 to 2025. A practicing physician and nationally recognized expert in medical privacy, she guided the organization’s growth into a leading voice for patient privacy, advancing policies that protect individual control over personal health information and promote responsible stewardship of medical data.
Adrian Gropper, MD
Chief Technology Officer
Dr. Adrian Gropper is a pioneer in patient-controlled health records and digital health technology. An MIT-trained engineer and Harvard Medical School physician, he founded AMICAS, a leader in web-based medical imaging, and MedCommons, an early patient-centered health records platform. He continues to advance technologies that strengthen patient privacy, data control, and individual rights in healthcare.
Board of Directors
Andrew Dillon, PhD
Director
Dr. Andrew Dillon is Professor in the School of Information at The University of Texas at Austin, where he formerly served as Dean. An internationally recognized leader in human-computer interaction and information science, his work explores how people engage with technology and how information systems can advance discovery, broaden access, and strengthen democratic participation.
David W. Hilgers, JD
Director
David W. Hilgers is a partner at Brown McCarroll LLP and one of the nation’s leading healthcare attorneys. With more than 35 years of experience in healthcare, corporate, and administrative law, he has advised physicians, hospitals, health systems, and other healthcare organizations while earning national recognition for his leadership in health law.
Deborah C. Peel MD
Director and President, Emeritus
Dr. Deborah C. Peel is Founder and President Emeritus of Patient Privacy Rights. A practicing physician, Freudian psychoanalyst, and nationally recognized authority on medical privacy, she founded the organization in 2004 to advance patients’ rights to control access to their personal health information. Through her leadership, Patient Privacy Rights became a leading voice for health privacy policy, patient autonomy, and responsible stewardship of medical data.
Kimble D. Ross
Director
Kim Ross is President of Kimble Public Affairs and a nationally recognized strategist in healthcare policy and legislative affairs. Formerly Vice President for Public Policy at the Texas Medical Association, he has spent decades advocating for physicians and patients, advising healthcare organizations on policy, political strategy, and regulatory issues. He brings to Patient Privacy Rights deep expertise in protecting the patient-physician relationship and advancing policies that safeguard patient privacy.
Michael Stokes
Director
Michael Stokes is a technology leader whose career has focused on solving complex technical challenges. He helped establish the industry standards that underpin modern digital color management and later led privacy and compliance initiatives at Microsoft, including pioneering privacy practices for Microsoft HealthVault. He has testified before the U.S. Senate Judiciary Committee on health privacy and played a key role in developing Patient Privacy Rights’ Trust Framework.
Kaliya Young
Director
Kaliya Young is an internationally recognized expert in digital identity, personal data, and user-centered technologies. Widely known as “Identity Woman,” she co-founded the Internet Identity Workshop and the Personal Data Ecosystem Consortium, pioneering efforts to give individuals greater control over their digital identities and personal information. She has served in leadership roles with the National Strategy for Trusted Identities in Cyberspace (NSTIC), OASIS IDTrust, and the World Wide Web Consortium (W3C), and was named a Young Global Leader by the World Economic Forum.
Get involved
Join our coalition, attend the Summit, or support our work through a donation.