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 work to give patients real control over their health information, hold hospitals and tech companies accountable, and make sure you actually understand what you're consenting to when you sign those forms.
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
Patient Privacy Rights was founded in 2004 by Dr. Deborah C. Peel, a practicing physician, Freudian psychoanalyst, and nationally recognized expert in medical privacy.
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.
Get involved
Join our coalition, attend the Summit, or support our work through a donation.