New Tool for your Personal Health Records (PHRs): Check out our PHR Privacy Report Card to see how some popular PHRs treat your health information privacy.
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October 23, 2009 - The Coalition for Patient Privacy sent comments to Health and Human Services on the inadequate Breach Notification rule. Read our comments here.
And we were not the only ones "dismayed and disappointed." Members of the House of Representatives sent a letter to HHS earlier this month urging them to "revise or repeal" the new breach notice rules that eliminate consumer protections intended by Congress! View their letter here.
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BOARD OF DIRECTORS
Deborah C. Peel, MD
Deborah C. Peel MD is a practicing physician and national expert on medical privacy. She became active in privacy rights at the federal level in 1993 when the Clinton Healthcare Initiative required every doctor-patient encounter to be entered in a federal health database. She advocated first as an individual and later on behalf of state and national medical specialty organizations for patient control of access to medical records. She presents at national panels and Congressional briefings, has provided state and federal testimony, and is widely quoted in trade journals and the national press. She is also the co-chair of the Committee on Government Relations and Insurance of the American Psychoanalytic Association.
In 2002, she was a plaintiff in Citizens for Health v. Leavitt. Plaintiffs sought to restore the right of consent which was eliminated by the amendments to the HIPAA Privacy Rule. Ultimately the case lost at the appellate level and was not accepted by the Supreme Court in 2006. The case showed the need for a national consumer organization dedicated to restoring patient privacy.
In 2004, Dr. Peel founded Patient Privacy Rights to educate and empower Americans to preserve and protect their fundamental human and civil rights to medical privacy.
Patient Privacy Rights is the nation’s leading medical privacy watchdog organization. PPR educates the public, healthcare and IT industries, the media, and Congress about the massive threats technology poses to Americans’ privacy rights. Strong state laws, common law, the physician-patient privilege, Constitutional law and the principles of medical ethics that protected patient privacy since the nation’s founding are all under assault by the healthcare, IT, and data mining industries and the Administration. Patient Privacy Rights represents the only real ‘stakeholders’ in the healthcare system: consumers. For electronic health systems to be trusted and succeed, the rights and interests of patients and consumers must come first.
In 2006, Dr. Peel formed the Coalition for Patient Privacy. The bipartisan coalition of 40+ organizations urged the US House of Representatives to add basic privacy protections to health IT legislation. Coalition members ranged from the far left to the far right, from the Family Research Council and the Christian Coalition, to the Electronic Privacy Information Center, the ACLU, and the California Medical Association. The House Democratic leadership fully endorsed adding basic privacy measures to HR 4157, but the Privacy Amendment was defeated along party lines.
Patient Privacy Rights and the Coalition continue to educate Congress about the need to save patient privacy rights and to promote the use of ‘smart’ technologies such as consent management systems that give consumers granular and instantaneous control of access to their electronic medical records and promote ‘smart’ laws like the proposed federally regulated patient-controlled health trusts. Patients simply will not trust or participate in the national electronic healthcare system and reap the benefits of HIT without privacy.
Ben Barnes
Ben Barnes has built a successful public policy career after over five decades of service in government, politics and private sector business development. With offices in Washington, D.C., Austin and Chicago, 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.
Charles E. (Ed) Baxter
Ed Baxter, an independent Health Consultant for both policy and legislation, is a part of The Baxter Group with offices in Austin and Houston. Prior to his current venture, he served as the corporate Government Relations Officer for Blue Cross Blue Shield of Texas.
Baxter served on The Texas Health Policy Task Force, The Long Term Care Advisory Group, The Governor's Task Force on the Uninsured, and as the Texas Speaker's Industry Representative on the committee for small group reform. He helped develop the first Texas State retiree's health program with state contributions. He also was instrumental in the implementation of the first Texas Uniform Group Insurance Plan. He worked with legislative committees in the pursuit of small group reform expanded coverage for newborns and children.
Baxter served on the National Blue Cross and Blue Shield Associations' Federal Relations Group Task Force working closely with congressional initiatives and studies on delivery and health care reform in Washington. He also served as a member of former Congressman Bill Gradison's Strategic Legislation Task Force for the Health Insurance Association of America (HIAA).
Baxter, a journalism major, holds a master's degree in Human Services from St. Edwards University. Presently, he is Chairman of the Texas Health Insurance Risk Pool, which is the second largest Pool in the country.
With over 30 years experience in the insurance industry, Mr. Baxter became involved with Patient Privacy Rights because he firmly believes that employers should not have access to the personal healthcare records of their employees.
Robert M. Pyles, MD
Bob Pyles received his medical school training at Harvard Medical School and his psychiatric residencies in Boston at Massachusetts Mental Health Center and Beth Israel Hospital. His psychoanalytic training was at the Boston Psychoanalytic Society and Institute. He is a Training and Supervising Analyst at the Psychoanalytic Institute of New England, East.
Dr. Pyles has held a number of national and international offices, such as president of the American Psychoanalytic Association, chair of the Committee on Government Relations and Insurance of that Association. He is a former president of the Psychoanalytic Society of New England, East and has chaired the Education Committee of the Psychoanalytic Institute of New England, East.
Dr. Pyles is a Distinguished Life Fellow of the American Psychiatric Association and a Massachusetts representative to the APA Assembly. He serves on the Executive Committee of the Massachusetts Psychiatric Society and is currently president-elect of that Society.
Dr. Pyles has served as vice president and regional representative from North America to the International Psychoanalytical Association. He is currently chair of the IPA Education Work Group. In addition, he is a founding member and first president of the Coalition for Patient Rights, a healthcare professional and consumer advocacy group.
Dr. Pyles has received numerous awards including the Massachusetts Psychiatric Society Outstanding Psychiatrist Award for “Advancement of the Profession” in 1995. In 1997 he received the American Psychiatric Association Special Presidential Commendation “in recognition of superb invigorating leadership of the psychoanalytic community, dedication to a truly multi-faceted, comprehensive psychiatry and courage in public advocacy.”
Dr. Pyles has written and spoken extensively on such topics as the psychology of terrorism and sports psychiatry, and has also been a consultant to major league baseball. In recent years he has focused particularly on the problems of healthcare delivery, managed care, HIPAA, and electronic medical records.
In addition he has worked extensively on Capitol Hill to preserve patient rights and to protect the ability of mental health professionals to deliver high quality care.
Kimball 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 Kimball 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.
Tina Williamson
Tina Williamson is an independent business consultant and advisor to a variety of innovative early-stage Internet, consumer product and technology companies. She is the founder of TMW Group, a business consulting practice bringing over twenty-five years of successful consumer marketing, advertising, brand development and public relations expertise to both early-stage and established companies in their marketing strategies and tactics for the Internet and general market.
Williamson was the first President of Patient Privacy Rights, serving in that capacity from May 2004 through February 2007. She built the first comprehensive website, managed the finances and office administration, established an outbound communications and public relations program, successfully guided the foundation to its designation as a 501c3 organization, helped build the Coalition for Patient Privacy, and lobbied Congress for patient privacy in federal legislation.
Williamson was Vice President of Marketing at one of the most successful Internet companies, Broadcast.com, the leading aggregator and broadcaster of streaming media programming on the Internet. She served in that capacity through its successful IPO and up to its sale to Yahoo! for $5.7 Billion.
Prior to starting TMW Group, Williamson was Senior Vice President at GSD&M Advertising, with a successful 16-year career working on national advertising accounts, including Brinker International Restaurants (Chili’s Bar & Grill, Romano’s Macaroni Grill, On The Border), Coors Brewing Company, Southwest Airlines, The Wall Street Journal, Domino’s Pizza, Taco Bell, and Wal-Mart Stores.
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