Our Mission
Patient Privacy Rights (PPR) is a nonprofit organization committed to defending the fundamental right to health privacy in the digital era. We work on behalf of American patients to ensure that every individual has meaningful control over who accesses their medical information, how it is used, and for what purposes.
Through public education, policy advocacy, legal engagement, research, and the development and support of privacy-preserving technologies, PPR strives to:
- Protect patient rights in a rapidly evolving digital health ecosystem
- Hold institutions and technologies accountable for how they manage health data
- Promote ethical standards that place patient trust and autonomy at the center of healthcare innovation
- Champion transparency, informed consent, and patient control in all aspects of health data exchange
We believe that privacy is essential to trust, dignity, and quality care—and that no one should have to sacrifice their rights in order to access health services.
What we do
Our History
How Patient Privacy Rights Began:
Patient Privacy Rights was founded in 2004 by Dr. Deborah C. Peel, a practicing physician, Freudian psychoanalyst, and nationally recognized expert in medical privacy.
Under Dr. Peel's leadership, Patient Privacy Rights launched the bipartisan Coalition for Patient Privacy in 2006, uniting diverse stakeholders in 50 national organizations, representing more than 10.3 million people, to advocate for stronger protections of personal health information.
In 2007, the organization achieved 501(c)(3) nonprofit status. That same year, Dr. Peel was ranked #4 on Modern Healthcare's list of the “100 Most Influential People in Healthcare”—an honor she received again in 2008 and 2011—underscoring her enduring influence on healthcare policy, ethics, and privacy.
Influencing Legislation:
In 2009, Patient Privacy Rights and the Coalition for Patient Privacy played a pivotal role in securing groundbreaking privacy and security protections within the HITECH Act—the technology component of the federal stimulus bill that ushered in the widespread adoption of electronic medical records across hospitals and clinics nationwide. Among our most impactful victories are:
- A ban on the sale of PHI without consent
- A right to receive an accounting of disclosures
- The ability to segment and protect sensitive data
- Mandatory breach notification
- A right to pay out-of-pocket and block disclosures for operations
- Data encryption requirements
In addition, we collaborated with Dr. Latanya Sweeney, who held the privacy and security seat on the Federal HIT Policy Committee at the time—to establish a patient's legal right to access their own medical records. Prior to this provision, many patients encountered overwhelming barriers or were outright denied access to their personal health information by providers.
This landmark change ushered in a new era of transparency and accountability in healthcare, reinforcing the principle that patients should be empowered to understand and control their own medical data. It laid the foundation for a more equitable and rights-based approach to health information access across the United States.
In 2011, Dr. Deborah Peel and Patient Privacy Rights played a pivotal role in the development and passage of Texas House Bill 300, landmark legislation that set one of the nation's highest standards for protecting medical privacy. HB 300 strengthened existing privacy laws by significantly tightening restrictions on access to personal medical records and prohibiting the for-profit sale of Texans' personal health information. The bill established Texas as a national leader in safeguarding patient data and reaffirmed the principle that medical information exists to serve patients—not commercial interests.
Health Privacy Summit:
Patient Privacy Rights is widely recognized for its leadership in health data privacy, particularly through its flagship annual event—the International Summit on the Future of Health Privacy. Launched in 2011 with the inaugural summit titled Getting IT Right, this pioneering event marked the first major gathering dedicated to the future of health privacy in a digital age.
Held every June in partnership with the O'Neill Institute at Georgetown University Law Center, the summit became a premier platform for dialogue and action. It brought together influential voices from healthcare, government, advocacy, law, academia, and big data to explore the ethical, legal, and societal dimensions of health information technology. (See programs and videos from past Summits)
In 2012, PPR began supporting theDataMap, a groundbreaking project that visually documents how Americans' personal data is collected, shared, and sold. That same year, PPR introduced the Privacy Trust Framework—a rigorous, 75+ point set of auditable criteria to assess how well technologies safeguard patient data. This framework empowers consumers to make informed decisions about electronic health tools and platforms by offering transparency and accountability.
PPR's work has been widely acknowledged. In 2013, founder Dr. Deborah Peel was named one of the “Top Ten Influencers in Health InfoSec” by Healthcare Information Security, reflecting her impact on national conversations around digital privacy and medical ethics.
Through its continued leadership, research, and advocacy, Patient Privacy Rights has demonstrated itself to be a key force in preserving health privacy in a world increasingly driven by technology.
Celebration of Privacy: Louis D. Brandeis and Top Data Detective Awards
From 2012 to 2016, Patient Privacy Rights honored exceptional leadership in the field of privacy with the prestigious Louis D. Brandeis Privacy Award. Established to recognize individuals who have made significant contributions to advancing privacy protections, the award reflects PPR's commitment to upholding the principles of individual dignity and data autonomy.
In 2016, PPR also launched the Top Data Detective Award to spotlight outstanding contributions that increase public awareness of privacy vulnerabilities, including work that advances theDataMap—a groundbreaking initiative supported by PPR that illuminates the often-invisible flows of personal data across today's complex information ecosystem. By mapping how data travels and is shared, theDataMap empowers individuals with greater transparency into where personal information may go, how it may be used, and the resulting harms caused.
Beyond celebrating individual achievements, these recognitions serve as a vital platform to convene thought leaders across sectors—creating space for dialogue, collaboration, and collective action in the pursuit of stronger privacy protections.
The Next Generation:
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.
Dr. Sweeney's appointment builds on the legacy of founder Dr. Deborah C. Peel, a trailblazer in patient privacy advocacy. With this leadership transition, Patient Privacy Rights is entering a new chapter—one focused on expanding the organization's impact in an increasingly digital and data-driven world.
As president, Dr. Sweeney is leading efforts to revitalize PPR's programs and public presence, including launching new partnerships, reactivating critical initiatives like theDataMap, and establishing fiscal sponsorships that align with PPR's mission. Her strategic vision includes strengthening PPR's role as a watchdog for personal health privacy, fostering transparency in health data practices, and developing privacy-enhancing technologies that serve the public interest.
This leadership milestone marks not just a change in title, but a renewed commitment to the organization's core mission: ensuring that individuals retain meaningful control over their personal health data in the face of growing digital threats and systemic challenges.
Our Philosophy
The Essential Role of Privacy in Health Care:
Privacy is not just a right—it is the cornerstone of a functioning, ethical health care system. Without the assurance of confidentiality, patients may withhold crucial information about symptoms, conditions, or experiences that are painful, frightening, embarrassing, or stigmatized. The fear of exposure or judgment can keep people from seeking help at all.
Illness is an intensely personal and vulnerable experience. Losing one’s health and strength, becoming dependent on others, and confronting the uncertainty of recovery or even mortality, can evoke fear, shame, and emotional distress. In such moments, privacy becomes essential—not just for protection, but for healing. It creates the trust required for patients to speak openly, and for clinicians to provide accurate diagnoses and compassionate care.
For more than 2,400 years, the practice of medicine has been rooted in the promise of confidentiality. Since the time of Hippocrates, physicians have been entrusted with the sacred duty to put the patient’s needs first, safeguarding personal health information with the utmost integrity. This enduring trust has made it possible for modern medicine to evolve and for health systems to serve patients effectively.
Today, as technology transforms health care, that sacred trust must be renewed and protected. The digital age brings unprecedented challenges to medical privacy—making it more urgent than ever to ensure that personal health data remains under the control of the individual it concerns.
Patient Privacy Rights was founded to defend this core principle: that privacy is a prerequisite for care, dignity, and autonomy. We advocate for a future where every person has the right to know who has access to their health data, to make informed choices, and to protect the most personal information about their bodies and lives.
