Deborah C. Peel, MD is the world’s leading advocate for patients’ rights to control the use of personal health information in electronic systems. She is also a practicing physician and Freudian psychoanalyst. She became an expert and privacy warrior to stop patients from being harmed. The lack of health privacy causes millions of US citizens to avoid early diagnosis and treatment for cancer, depression, and STDs every year.
Her passion is informing the public about privacy-enhancing technologies and the major fixes needed in law and policy, so they can join the battle to restore our civil and human rights to health privacy.
In 2002, HIPAA was amended to eliminate patients’ rights to control the use of personal health information. The right of consent was replaced with “regulatory permission for covered entities to use and disclose health records for treatment, payment, and healthcare operations.” The federal government put data holding institutions in control of the use, disclosure, and sale of patients’ health information, from DNA to diagnoses to prescription records.
In 2004, she formed Patient Privacy Rights (PPR), a 501c3 non-profit organization to educate Americans about the urgent need to restore patient control over health data. PPR is the world’s leading advocate for health privacy, with over 20,000 members in all 50 states.
In 2006, Dr. Peel founded the bipartisan Coalition for Patient Privacy. The coalition includes over 50+ national organizations, representing 10.3 million people who want to control the use of personal health information. In 2007, Microsoft Corporation joined the Coalition.
In 2009, the Coalition for Patient Privacy worked to add new privacy and security protections to HITECH, the technology part of the stimulus bill. New protections included: a ban on sales of protected health information (PHI) without consent, a list of all disclosures of health data from electronic health records systems, the ability to separate sensitive health data and prevent it from being disclosed, receive notice of data breaches, a new right to block disclosure of PHI for healthcare operations if you pay for treatment out-of-pocket, and requiring data to be encrypted. Read the Coalition’s letter to Congress here.
Since 2007, Dr. Peel has been included on ModernHealthcare magazine’s “100 Most Influential in Healthcare” list four times. In 2013, she was named one of the “Top Ten Influencers in Health InfoSec” by HealthcareInfoSecurity.
Dr. Peel is the catalyst and creator of the annual International Summits on the Future of Health Privacy. The summits are the only venue where national and international experts from advocacy, academia, government, and industry come together and debate urgent threats to health privacy and realistic solutions. Register for the next summit or watch videos of earlier summits at: www.healthprivacysummit.org.
Ben Barnes has built a successful public policy career over five decades of service in government, politics and private sector business development. With offices in Washington, D.C. and Austin, the Ben Barnes Group represents a number of Fortune 500 companies and trade associations that advocate for both public and private interests. The Ben Barnes Group provides a range of consulting services including strategic planning and advocacy around state and federal legislation, regulatory matters and other public policy issues.
A protégée of President Lyndon Johnson, Barnes won a seat in the Texas House of Representatives at the age of 22. By 1962, he was a top lieutenant and close ally of Texas Governor John Connally. Three years later, Barnes was elected Texas Speaker of the House. At 26, he was the youngest Speaker of the House in state history. In 1968, Barnes was elected lieutenant governor, again the youngest ever, garnering the most votes of any statewide candidate in Texas history.
Using the same energy that drove his political career, Barnes built a multi-million dollar real estate empire through the seventies and eighties. Barnes now focuses on public policy advocacy and invests in new companies. Since the early 1990s, Barnes has been an active player in Democratic politics, referred to by the Texas Monthly as “one of the chief financial and strategic architects of the Democratic resurgence in the Senate.”
In 1995, he was named a Distinguished Alumnus of University of Texas, Austin, an honor also bestowed on such luminaries as Lady Bird Johnson and Walter Cronkite. Barnes sits on a number of corporate boards and supports several philanthropic organizations, including the Boys and Girls Club of America. He and his wife, Melanie, adopted two daughters from Romania and Russia, and give of their time and money to numerous charitable organizations.
Mr. Barnes joined the board of Patient Privacy Rights because, with his long service in public service and advocacy, he believes in an individual’s human and constitutional right to privacy.
Jan Burrow started her career in education, with a Masters in Education and Counseling, as well as a Masters in Sociology. She has also worked as a writer for McGraw Hill and as an educational administrator. For the last twenty years she has been involved in commercial real estate. She and her husband, William F. Burrow, founded Sage Land Company, which focuses mainly on development and investments. Mrs. Burrow recently became a member of the Board of Directors for Patient Privacy Rights. She believes health privacy is a major issue that crosses many lines and affects everyone. She has served on many community boards, including her recent term at Austin Recovery, and continues to be very active in the Austin community.
Debra Diener, JD, CIPP/G
She is now an independent consultant providing strategic guidance to industry and non-profit organizations. Her current clients include the American Psychological Association (APA) with whom she is working on their Publish Trust Framework initiative. Prior clients for whom she provided privacy strategic guidance include Booz Allen Hamilton and Criterion Systems, Inc.
During her years with IRS and DHS, Ms. Diener was the Co-chair of the Identity Management Subcommittee of the CIO Council’s Privacy Committee, where she helped spearhead the federal government’s privacy and identity management collaborations with private sector groups.
She serves on the OpenIdentity (OIX) Advisory Board and the Shared Assessments advisory board. Ms. Diener is actively participating in the Identity Ecosystem Steering Group (IDESG) where she chairs the Membership and Outreach Subcommittee of the IDESG’s Privacy Committee.
Ms. Diener received her B.A. cum laude from Syracuse University, her M.A. from the University of Pennsylvania and her J.D. with honors from the George Washington University. She is also a Certified Information Privacy Professional with a Government specialization. Ms. Diener writes a consumer-oriented privacy blog (www.PrivacyMadeSimple.net); her blogs have been reposted by the American Library Association, the Consumer Federation of America and FraudAvengers.
Andrew Dillon, PhD
Andrew has been an active researcher of the human response to information technology for the last 20 years, graduating from the National University of Ireland (M.A. first class) and Loughborough University of Technology before being appointed Research Fellow at the Human Sciences & Advanced Technology Research Institute in the UK. He moved to Indiana University in 1994 where, amongst other duties, he developed and served as the founding Director of the Masters in Human- Computer Interaction at the School of Informatics. He joined the University of Texas at Austin in January 2002 as Dean and Professor of the School of Information. Defying professional categorization, he has held appointments in departments or schools of cognitive science, computer science, psychology, instructional systems technology, management information systems, library and information science, and informatics. Having published more than 100 articles and books on various aspects of human information behavior and design, Andrew serves or has served on the editorial boards of many leading journals such as the International Journal of Human-Computer Studies, Interacting with Computers, the Journal of Documentation, and the Journal of the American Society for Information Science and Technology. He has contributed invited entries for the Macmillan Encyclopedia of Cognitive Science, the International Encyclopedia of Ergonomics & Human Factors and the Encyclopedia of Library and Information Science and has received research funding from NSF, Microsoft, and CEC among others. He advocates a view of information science as a means of accelerating discovery and shaping a more democratic world.
Kaliya Hamlin is an expert in user-centric identity and data sharing and is widely known as Identity Woman (its also the name of her blog and twitter handle). She is the co-founder of efemurl: A Community Empowerment Platform.
In 2005 she co-founded the Internet Identity Workshop (with Doc Searls and Phil Windley), five years later she founded the Personal Data Ecosystem Consortium to catalyze a network of companies working to give individuals the tools to collect, manage and gain value from their own personal data generated actively and passively as they interact with all kinds of digital systems.
David W. Hilgers is a Partner at Brown McCarroll, L.L.P. and is a member of the firm’s Health Care Law Section. He has practiced law for more than thirty-five years, focusing primarily on health care, corporate, and administrative law. Mr. Hilgers represents healthcare providers, including physicians, dentists, healthcare systems, managed care organizations, long-term care facilities, multi-specialty groups, hospitals, hospital districts, and community mental health and mental retardation centers.
Mr. Hilgers is a member of the American Bar Association’s Health Law Council, served as the 2009-2010 Chair of the Health Law Section, and is the current Chair of the Standing Committee on Continuing Legal Education of the Section Officers Council. He is a regular speaker on issues surrounding the healthcare industry. He was honored in Chicago in November 2004 as one of ten Nightingale’s Healthcare News’ Outstanding Physician Practice Lawyers in the United States. Other honors include Best of Business Attorney, Health Care Law, Austin Business Journal, 2005; “Leaders in their Field,” Healthcare Law, Chambers USA 2005-2010 Guides; Super Lawyer, Health Care Law, named by Law and Politics Media, Inc. and published in Texas Monthly, 2003-2011; and “The Top 50” of the Central and West Texas Region, published in Texas Monthly, 2007, 2010, and 2011. He has been recognized in Best Lawyers in America, 1999-2011; and Texas Lawyer’s The Go-To Guide, Health Law, 2007.
Mr. Hilgers received his Doctor of Jurisprudence, with honors, from The University of Texas School of Law and his Bachelor of Arts, with honors, from Swarthmore College. He is a member of the Order of the Coif, and was a briefing attorney to the Chief Justice of the Texas Supreme Court.
Dennie was raised in Abilene, Texas. With her education in Fashion Merchandising, she came to Austin in 1978 to pursue a career as a buyer of women’s ready to wear for a family owned department store. She was promoted the merchandise manager of all women’s clothing in 1979.
Dennie married Sid Jagger, an Austin real estate developer, in 1981. From that point on, Dennie became involved in boards of country clubs and also served as a board member for The Betty Ford Center in Rancho Mirage, California, where she served as chairman of the finance committee. She was very passionate about the mission of the center for the 18 years she served on the board. Affordable treatment for addiction was top priority. Dennie is also familiar with the privacy issues that affect patients seeking treatment, especially since the Center often faced privacy challenges due to the high profile patients that entered the center. However, it was the center’s mission to treat all patients, rich or poor, with the same high quality treatment plan.
In 1994 she formed Jagger Interests and is now is involved in real estate investments.
Dennie enjoys golf these days. In her golfing career she has won 11 club championships and was recognized by Golf Magazine for being one of a very few women to win 3 club championship at 3 different clubs in the same year.
Kimble D. Ross
Kim Ross is a partially rehabilitated lobbyist who represented the Texas Medical Association as their Vice President for Public Policy and Director of Public Affairs for over 16 years. During his tenure at TMA, Mr. Ross, coordinated all political, legislative, legal and regulatory matters for the 36,000 member professional society, which garnered national recognition as America’s top medical association. Medical Economics characterized TMA as “America’s Best Medical Society” and major daily newspapers as diverse as the Washington Post, Wall Street Journal, New York Times, LA Times, San Francisco Examiner, and many other national periodicals frequently referred to the TMA as among the powerful and influential in the country. Texas Monthly described Mr. Ross, in a survey of the Texas political landscape, as “Texas’ best strategist.”
In 2003 Ross formed Kimble Public Affairs, which specializes in healthcare policy for national and state health care organizations, with a special emphasis on physicians’ rights. He advises a range of national health care industry organizations on health care policy and political strategy, and works closely with litigation teams engaged on physicians’ behalf in federal and state litigation. Mr. Ross lectures frequently on health care policy and politics at medical schools and national conferences, and conducts training seminars on the “art” of lobbying for a number of national health care and related trade organizations.
Mr. Ross joined Patient Privacy Rights as a board member because, as a medical lobbyist for two decades, he has seen “up close and personal” the systematic dismantling of the patient-physician relationship by legislatures and the Congress for purposes that have little or nothing to do with the clinical needs of patients.
Chief Technology Officer
Adrian Gropper, MD
Dr. Gropper is a pioneer in patient-centered and patient-controlled health records on the Internet. He holds an engineering degree from MIT and an MD from Harvard Medical School. Early work on telemedicine and picture archiving and communications systems (PACS) with Massachusetts General Hospital also introduced him to MIT’s Guardian Angel project that many consider the parent of many of today’s patient-facing technologies. In 1995, Dr. Gropper founded AMICAS (NAS:AMCS) as the first Web-based radiology PACS and the first to provide direct links to diagnostic imaging in electronic health records.
Dr. Gropper founded MedCommons in 2004 to develop software for image-enabled, patient-centered health records supporting all of a patient’s caregivers. Dr. Gropper participated in many early standardization efforts including IHE, HITSP, Liberty Alliance and the Continuity of Care Record steering committee. He also serves on the Massachusetts Health Information Exchange Technology Workgroup, the Massachusetts Medical Society Committee for Information Technology and Markle Foundation panels. Currently he participates as a patient-access advocate in the NwHIN Direct Project, Blue Button Plus health information exchange, and the NSTIC / IDESG cyber ID initiative. His focus is technology that applies fair information practice to our new world of continuous surveillance and predictive analytics.