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

2004

Patient Privacy Rights founded by Dr. Deborah C. Peel

2006

Coalition for Patient Privacy launched with 50+ organizations

2007

Achieved 501(c)(3) nonprofit status

2009

Secured major protections in the HITECH Act

2011

Launched the International Summit on the Future of Health Privacy; helped develop Texas HB 300

2012

Inaugurated Louis D. Brandeis Privacy Award

2016

Introduced the Top Data Detective Award

2025

Dr. Latanya Sweeney becomes PPR's second president

Leadership

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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.

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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.

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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.