Consumer Groups Call for Consumer Protection Framework on HIT

April 12, 2007 

The Honorable Tom Harkin
Chairman, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies
Committee on Appropriations
United States Senate 

Dear Chairman Harkin: 

            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 engage in more active oversight of HHS’ efforts to promote adoption of interoperable health information technology (HIT).  The Office of the National Coordinator for Health Information Technology has received significant resources.  It was funded at $61 million in fiscal year (FY) 2006 and FY 2007, and the President’s budget has requested $118 million for the Office for FY 2008.  We support federal efforts to enhance access to nationwide, interoperable HIT as a critical component 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.  

            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 Standards 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 http://www.ncvhs.hhs.gov/060622lt.htm). 

            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 http://www.gao.gov/new.items/d07400t.pdf.  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.” 

            The Department of Veterans Affairs, an agency actively involved in the Administration’s HIT efforts, reviewed the GAO report and concurred with its findings and recommendations.  Yet HHS rejected GAO’s conclusions and appears to believe it is adequately addressing the need for meaningful privacy and security policies within a nationwide HIT infrastructure.  We could not disagree more with HHS’ self-assessment. 

            We urge you to hold a hearing to examine these issues, and to insist that the development of a coherent consumer protection framework for HIT be given the highest priority.  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 look forward to working with you as you consider these issues.  Please contact any of us if you have questions or need more information. 

Sincerely, 

National Partnership for Women & Families
AFL-CIO
AFSCME
Bazelon Center for Mental Health Law
Center for Medical Consumers
Childbirth Connection
Consumers Union
Department for Professional Employees, AFL-CIO
Health Care For All
International Union, United Auto Workers
National Consumers League
Title II Community AIDS National Network
United American Nurses
United Steelworkers International Union