Deborah C. Peel, MD

Deborah C. Peel, MD is the nation’s leading advocate for patients’ rights to control access to sensitive personal health information in electronic systems. The lack of health privacy causes millions of people to avoid early diagnosis and treatment for cancer, depression, and STDs every year. She became an expert and privacy warrior to stop patients from being harmed. She is a practicing physician and Freudian psychoanalyst.

Her passion is educating the public about privacy-enhancing technologies, architectures, policies, and laws, so they can advocate to restore their civil and human rights to health privacy.

In 2002, amendments to HIPAA eliminated patients’ longstanding rights to control 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 Amended HIPAA Privacy Rule put institutions in control of the use, disclosure, and sale of patients’ health information, from DNA to diagnoses to prescription records. Patient control over health data was eliminated.

In 2004, she formed Patient Privacy Rights (PPR), a 501c3 non-profit organization to educate Americans about the importance of health privacy. PPR is the world’s leading consumer health privacy advocacy organization, with over 12,000 members in all 50 states.

In 2006, Dr. Peel founded the bipartisan Coalition for Patient Privacy. The coalition membership 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 ensure historic new privacy and security protections were added to HITECH, the technology portion of the stimulus bill. Protections included: a ban on sales of protected health information (PHI) without consent, audit trails for disclosures of PHI from EHRs, the ability to segment sensitive PHI, meaningful breach notice, the right to block disclosure of PHI for healthcare operations if treatment is paid for out-of-pocket, and requiring encryption. See: http://patientprivacyrights.org/media/CoalitionPatPriv_Final01.14.09.pdf

Since 2007, Dr. Peel has been named one of ModernHealthcare magazine’s “100 Most Influential in Healthcare” 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. First started in 2011, the summits are unique in the world: urgent threats to health privacy and realistic solutions are thoughtfully debated by national and international experts from advocacy, academia, government, and industry. To register for the next summit and watch videos from earlier summits visit: www.healthprivacysummit.org.

Troy Ball

Ball is the founder and CEO of Troy & Sons Distillers located in Asheville, North Carolina. Troy & Sons produces America’s first premium moonshine, using an heirloom corn that survived on one family farm in North Carolina. Troy is the fourth female distillery owner in America and the first to produce Moonshine. Next year Troy & Sons will release a Reserve Moonshine and Blonde Whiskey.

Ball is a three time National Champion equestrian and has supported the United States Endurance Team in international competitions in Dubai and Malaysia. She currently sits on the Western Residence Board for the Governor of North Carolina.

Ben Barnes

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.

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.

David W. Hilgers

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.

Brynn Mow

Owner and CEO Brynn Mow established Jericho Systems Corporation in 2002. Under her dynamic and visionary leadership, Jericho pioneered and patented the first commercial Attribute-Based Access Control (ABAC) technology, the EnterSpace® Decisioning Service (ESDS) for security and targeted marketing. Mow spearheads Jericho’s strategic direction, sales, and business development, and has guided the company’s successful ventures in the military and healthcare markets.

Previously, Mow launched and later sold Dallas Technology Group, a software consultancy. She was the first female vice president of Romac International, now K-Force, a national provider of specialty staffing and business solutions. Mow is a graduate of Southern Methodist University.

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.

Latanya Sweeney, PhD

Latanya Sweeney, PhD has made a career of weaving technology and policy together. Dr. Sweeney develops algorithms and constructs real-world systems that allow information to be shared with provable guarantees of privacy (legally and scientifically) while remaining practically useful. Dr. Sweeney has made numerous discoveries related to identifiability and privacy technologies and she has had significant impact on American privacy policy. Her work has received awards from numerous organizations, including the American Psychiatric Association, the American Medical Informatics Association, and the Blue Cross Blue Shield Association. Dr. Sweeney’s work has appeared in hundreds of news articles, numerous academic papers, was cited in the original publication of the HIPAA Privacy Rule and was praised in the TAPAC Report that reviewed the Total Information Awareness Project of DARPA. She has also testified before the Privacy and Integrity Advisory Committee of the Department of Homeland Security and the European Union Commission. Companies have licensed and continue to use her privacy technologies. Dr. Sweeney is a Distinguished Career Professor of Computer Science, Technology and Policy in the School of Computer Science at Carnegie Mellon University, where she also founded and serves as the Director of the Data Privacy Lab. She received her PhD in computer science from the Massachusetts Institute of Technology. Her undergraduate degree in computer science was completed at Harvard University. More information about Dr. Sweeney is available at her website dataprivacylab.org/people/sweeney/index.html.