September 8 , 2004

The Honorable Tommy G. Thompson
Secretary
Department of Health and Human Services
200 Independence Avenue SW
Washington, D.C. 20201

Dear Secretary Thompson:

The National Committee on Vital and Health Statistics (NCVHS) commends your leadership in promoting health information technology (HIT). Your selection of David Brailer, M.D., Ph.D., as the first National Coordinator for Health Information Technology was an excellent choice. His vision and experience are well suited to the great challenges ahead. The Framework for Strategic Action that he unveiled on July 21 was a remarkable achievement in both its speed and balance. The HHS HIT Summit and National Health Information Infrastructure (NHII) conference was a good vehicle for widely disseminating the Framework and mobilizing key stakeholders. Dr. Brailer, his staff, and the ASPE NHII staff are to be warmly congratulated for their work on the Framework and conference under such tight timetables.

The NCVHS Workgroup on the National Health Information Infrastructure (NHII) heard testimony on July 23 from each of the conference break out groups; their reports and recommendations are posted on the NCVHS website at: http://www.ncvhs.hhs.gov/040723ag.htm. The Workgroup also received useful input from the meeting participants and from leaders of the Connecting for Health initiative; these comments are reflected in our posted transcripts. Written recommendations submitted by participants are also posted on the NCVHS website. We encourage the Department to review them as it proceeds.

The NCVHS would be pleased to assist in developing strategies for establishing a detailed Framework and accomplishing the goals and objectives you select. In addition, we have identified some areas where additional work appears to be needed:

• Understanding, from the consumer and healthcare industry perspectives, approaches, best practices, and issues related to the use of master patient indexes and other methods to assure that healthcare information can be reliably associated with the right individual. NCVHS will schedule hearings on this issue. The Committee recognizes that this is both a standards and a privacy issue and will be examining both aspects.
• Issues related to patient control of their personal health information. Several speakers pointed to deficiencies in the HIPAA privacy rule and the need to balance data exchange that is essential to health care with enhanced personal control. NCVHS will hold hearings on this issue.
• General policy issues related to Personal Health Records. NCVHS will hold hearings this Fall.
• Developing a research agenda for the NHII: what areas need additional research in order to make sound choices? While AHRQ is supporting important work in the healthcare dimension, additional work is needed to support certain strategies in the population health and personal health dimensions of the Framework, such as unifying public health surveillance and encouraging the use of personal health records.
• Issues related to the movement of data between health care, population health, and personal health dimensions and, in general, secondary uses of data from any dimension. These information flows are essential to strengthen quality assessment and improvement, as well as research and other endeavors.
• Developing a comprehensive statement on “Rules of the Road,” including but not limited to interoperability, legal obstacles, and, in general, the key things that potential participants need to know about how to participate in the NHII. NCVHS will also begin to look at this.
• Two issues are important, but we suggest revisiting them in about six months to see how work has progressed: metrics for measuring progress, and conformance testing.

The Committee will further review recent developments related to HIT and the NHII at each of its meetings, beginning September 1-2, 2004, and we will provide additional suggestions to the Department as appropriate.

Again, our congratulations to you and Dr. Brailer for laying a good foundation for action. We look forward to working with you.

Sincerely,

/s/

John R. Lumpkin, M.D., M.P.H.
Chairman, National Committee on Vital and Health Statistics

cc: Dr. David Brailer, National Coordinator for Health Information Technology
HHS Data Council Co-Chairs