Deborah C. Peel, MD
Dr. Peel is the nation's leading advocate for patients' rights to control access to sensitive personal health information in electronic systems. She began to work on health privacy rights in 1993 and founded Patient Privacy Rights (PPR) in 2004. PPR has over 12,000 members in all 50 states.
In 2006 she formed the bipartisan Coalition for Patient Privacy representing 10.3M Americans. The Coalition advocates for strong privacy principles and standards, privacy-enhancing technologies, and new legislation to require trustworthy electronic health systems and data exchanges that patients are willing to use.
In 2011, Dr. Peel created the 1st International Summit on the Future of Health Privacy. The annual summits are unique in the world-- the only place where thoughtful discussions about urgent health privacy issues and solutions take place between all stakeholders: privacy experts from advocacy organizations, industry, academia, and top government officials. See: http://www.healthprivacysummit.org/
The 3rd International Summit on the Future of Health Privacy will be held on June 5-6 in Washington, DC. The title is “The Value of Health Data and Privacy, How can the Conflict be Resolved?” Registration to attend or watch via live streaming video is free at http://www.healthprivacysummit.org/.
In 2013, PPR introduced its Trust Framework, 75+ auditable criteria based on expanded, strengthened Fair Information Practices principles. The Framework can be used to measure how well health IT systems, applications, and platforms meet the public's expectations for privacy and for research about factors that influence trust in healthcare systems and technologies. Also in 2013, PPR introduced a 5 -year plan to move the U.S. from institutional to patient-controlled health IT systems. [See chapter 6 in "Information Privacy in the Evolving Healthcare Environment"].
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