VIA E-mail HITCommittee@gao.gov

Gene L. Dodaro
Acting Comptroller General of the United States
Government Accountability Office
441 G. Street, NW.
Washington, DC 20548

Re: Nominations to the HIT Policy Committee

Dear Mr. Dodaro,

We the undersigned consumer, privacy, and patient rights organizations, representing millions of Americans across the country, nominate Robert Ellis Smith, Pam Dixon, Dr. Deborah Peel, and Dr. Latanya Sweeney to serve on the Health Information Technology (HIT) Policy Committee.  The work of the Committee will be greatly enhanced by the inclusion of experts in privacy, consumer protection, and computing/telecommunications technologies.

As explained below, Mr. Smith, Ms. Dixon, and Dr. Peel are each highly qualified to be two of the three members who are "advocates for patients or consumers."  Dr. Sweeney is extremely qualified to serve on the committee as an expert in health information privacy and security.

Robert Ellis Smith is the publisher and editor of Privacy Journal, a leading publication on privacy in American society that has traced the development of privacy for more than thirty years.  He has researched and written extensively about medical record privacy for three decades and was actively involved in drafting legislative and regulatory language for the Health Insurance Portability Accountability Act. He is well regarded and respected by the privacy advocacy community. He has a long history of work on matters that advance civil rights and equal opportunity.  He has worked in federal and state government, including the Department of Health Education and Welfare Office of Civil Rights, and as an investigator with the Rhode Island Attorney General.

Pam Dixon is the executive director of World Privacy Forum (WPF), a non-profit public interest group based in San Diego, California; she has special expertise in the area of health privacy and security. She researched and published the first major report on medical identity theft in May 2006.  California enacted legislation that became effective in 2008 based on the recommendations in the WPF report. Ms. Dixon currently serves as co-chair of the California Privacy and Security Advisory Board, which was established by California to work on patient privacy and security issues raised by electronic health information exchange.  She was recently elected to be the consumer representative on the Health Information Technology Standards Panel (HITSP) board working on specifications and standards for the National Health Information Network.

Dr. Deborah Peel founded in 2004 and chairs Patient Privacy Rights, the nation’s leading consumer advocacy organization for patient privacy.  Beginning in 1993, Dr. Peel began to understand more fully the need to protect patients’ privacy, speaking out for and protecting patient privacy nationally and the need for a consumer based privacy organization.  In addition to PPR, Dr. Peel chairs the Coalition for Patient Privacy, which represents over 50 organizations with 10 million members.  PPR and the Coalition have been very active in educating consumers, the public and Congress on the need to make certain that patients’ privacy is and continues to be protected as the country moves into electronic medical records.   The principles of the Coalition for Patient Privacy are the core of the privacy protections enacted in the ARRA.  Dr. Peel has been on the board of HITSP, has testified before Congress and sought as a speaker in the US and the EU.  Finally, Dr. Peel was voted one of the 100 Most Powerful in Healthcare in the U. S. in 2007 and 2008; this was the first time that a privacy advocate had been included on the list.

Dr. Latanya Sweeney, after graduating cum laude with a computer science degree from Harvard University, in 2001, received her Ph.D in computer science from MIT. She was the first and currently the only black woman to receive this degree from MIT. In 1998, just before completing her PhD program, she joined the faculty of Carnegie Mellon University where in 2001 she founded the Data Privacy Laboratory (serving as its Director). The Data Privacy Lab (privacy.cs.cmu.edu) works with real-world stake-holders to solve the most pressing privacy technology problems of our times.  

Her work involves creating technologies and related policies with provable guarantees of privacy protection while allowing society to collect and share person-specific information for many worthy purposes. Dr. Sweeney has made numerous discoveries related to identifiability and privacy technologies and she has had a 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, and was even cited in the original publication of the HIPAA Privacy Rule. Companies have licensed and continue to use her privacy technologies. The American College of Medical Informatics inducted her as a Fellow in 2006.  She is currently a visiting professor at M.I.T. and a visiting researcher at Harvard.

Robert Ellis Smith, Pam Dixon, Dr. Deborah Peel, and Dr. Latanya Sweeney would bring wisdom, experience, and insight to the critical challenge of privacy protections for HIT programs. We offer our full support for their nomination to serve on the HIT Policy Committee.

Sincerely,

Center for Financial Privacy and Human Rights
Consumer Action
Electronic Frontier Foundation
Electronic Privacy Information Center
Fairfax County Privacy Council
Liberty Coalition
National Center for Transgender Equality
National Network to End Domestic Violence
National Workrights Institute
Patient Privacy Rights
Privacy Rights Clearinghouse
Privacy Times
U.S. Bill of Rights Foundation
U.S. Public Interest Research Group