September 26, 2005


The Honorable Michael O. Leavitt
Secretary
Department of Health and Human Services
200 Independence Avenue, SW
Washington, DC 20201

Dear Secretary Leavitt:

Recently, you announced your appointments to the American Health Information Community (AHIC), and we understand that the Department is ready to award a number of contracts related to health information technology (HIT) and the development of interoperability standards. As organizations that have been working on and concerned about these issues, we are requesting that the consumer perspective be addressed fully by the AHIC and in other HHS activities to promote widespread adoption of HIT.

We agree that health information technology has the potential to offer significant benefits to Americans. It holds the promise of improving the quality of health care, reducing medical errors, providing information to evaluate providers and help patients make informed choices, and placing patients more in control of their own care.

While we support many of the benefits HIT offers to consumer and patients, we also know that the public has serious concerns about health information technology. Seventy percent of Americans believe that a system of electronic health records would result in exposure of private health information, and 69 percent worry that such a system would result in more sharing of personal health information without their knowledge, according to a recent Harris survey. The same survey found that almost half of Americans believe that the privacy risks outweigh any other benefits that health information technology has to offer.

Ultimately, the success of efforts to promote widespread adoption of HIT and electronic health records will depend on the confidence and willingness of consumers to accept and use the technology. Given the pervasive concerns expressed by the public, it is critical that you ensure a meaningful process to address the issues and priorities of consumers as you move forward with AHIC and other activities to advance widespread adoption of HIT. These include patient control, public education, inclusion of patients and families as information users in the network, selection of priority use cases, rules for use of federal funds, privacy and security, and others.

You have expressed your interest in dialogue with organizations representing consumers. We believe there should be mechanisms to ensure that consumers have a meaningful role in the work of the AHIC. While consumers are clearly stakeholders, they are not organized in the same way as trade and professional associations, nor do they share a single business interest.
Given the breadth and highly technical nature of the issues, we are asking that you establish a structured and visible way for the range of organizations representing consumers to comment on issues before AHIC.

Consumer involvement is also critical to the other activities underway. There is a clear path to the development of interoperability standards, through the HHS Request for Proposal (RFP) on Standards Harmonization, yet there is no clear mechanism for developing policy and recommendations regarding privacy and security practices to protect health information. Within the Standards Harmonization RFP, there is no indication that consumers will play a meaningful role, even though there is great potential to influence the quality of care and consumers’ ability to take greater control of their health care.

As a group, we are working together and ready to play a constructive role in the rapidly-moving policy discussions and activities on health information. We would welcome the opportunity to talk to you about the specific ways we can participate. Jane Loewenson, at the National Partnership for Women & Families, is coordinating our group and would be able to work with your staff to arrange a time.

Sincerely,

National Partnership for Women & Families
AARP
AFL-CIO
American Federation of State, County and Municipal Employees
American Hospice Foundation
Center for Medical Consumers
Citizen Advocacy Center
Consumers Union
Department for Professional Employees, AFL-CIO
Health Privacy Project
Jacobs Institute of Women’s Health
Maternity Center Association
National Consumers League
National Health Law Program
Service Employees International Union
Title II Community AIDS Network