Consumer Coalition Letter Regarding GAO Report on HIT and Privacy

Consumer Groups Call for Consumer Protection Framework on HIT

February 20, 2007

The Honorable John D. Dingell
Chairman, Committee on Energy and Commerce
United States House of Representatives

Dear Chairman Dingell,

As organizations committed to fostering improvement in the quality, safety, and efficiency of the American health care system, we are writing to urge you to address the need for a comprehensive, thoughtful approach to the privacy and security of health information in the development of health information technology (HIT) legislation.  We believe that access to nationwide, interoperable HIT is key to achieving the broader goal of a high quality, safe, and more efficient health care system.  However, any legislative or administrative effort to expand the use of HIT must address privacy and security policy issues as an integral part of the process.  The standards set by the HIPAA Privacy Rule are not sufficient.  At the most basic level, the HIPAA Privacy Rule does not even apply to many of the core organizations upon which the Nationwide Health Information Network is being built.

Over the past two years, many of us have committed substantial time and resources to participating in Administration initiatives to create a Nationwide Health Information Network, including serving on the Health Information Technology Harmonization Panel and policy workgroups of the American Health Information Community (AHIC).  To date, we have been disappointed by the Administration’s lack of real commitment to the privacy, confidentiality, and security of patients’ health information.  As proposed standards are being tested, and initial product certification is being granted, major gaps remain in both privacy and security standards, and the Administration appears to have little sense of urgency in addressing those gaps.  Furthermore, the Secretary of HHS has yet to respond to the most thoughtful report on the issue from his own advisory committee – the National Committee on Vital & Health Statistics (delivered in June 2006, online at

To underscore our concerns, we would like to call your attention to a recent GAO report titled,HIT: Early Efforts Initiated but Comprehensive Privacy Approach Needed for National Strategy, available online at  The report, released in January 2007, states: “An overall approach for integrating [HHS’] various privacy related initiatives has not been fully defined and implemented….much work remains before they are completed and the outcomes of the various efforts are integrated.”  The GAO found, further, that “ it has not been determined which entity participating in HHS’s privacy-related activities is responsible for integrating these various initiatives and the extent to which their results will address key privacy principles.”

As you consider HIT legislation in this Congress, we urge you to insist that the development of a coherent consumer protection framework for HIT be given the highest priority.  To help achieve this, we propose that any HIT legislation authorize an independent, non-partisan advisory body charged with developing a national, government-wide HIT policy framework to ensure the privacy and security of consumers’ health information.  Winning consumer trust in the health system’s ability to protect their personal information is critical to gaining widespread participation in any such system – and thereby realizing HIT’s promise to improve health care for us all.

We have attached a more comprehensive summary of our proposal, and look forward to working with you as HIT legislation moves forward.  Please contact any of us if you have questions or need more information.


National Partnership for Women and Families
American Association of People with Disabilities (AAPD)
American Federation of Teachers
Bazelon Center for Mental Health Law
Center for Medical Consumers
Childbirth Connection
Consumers Union
Department for Professional Employees, AFL-CIO
Health Care for All
Health Privacy Project
International Union, United Auto Workers
National Committee for Quality Assurance
National Consumers League
National Health Law Program
Service Employees International Union
Title II Community AIDS National Network
United Steelworkers International Union (USW)