February 20, 2004 – Letter to the National Institute of Child Health and Human Development, NIH regarding the establishment of the National Children’s Study

February 20, 2004

Duane Alexander, M.D.
Director
National Institute of Child Health and Human Development
National Institutes of Health
9000 Rockville Pike
Building 31
Bethesda, Maryland  20892

Dear Dr. Alexander:

The National Committee on Vital and Health Statistics (NCVHS), an advisory committee to the Secretary, Department of Health and Human Services (HHS), is charged with advising the Secretary’s on broad health statistics and data issues.  The Subcommittee on Populations of NCVHS concerns itself with HHS population-based health data issues.  The committee is particularly interested in ensuring that adequate, timely and relevant data are collected and available for use by health planners, researchers, policy makers and communities in order to monitor and assess health status, health behaviors, care and access to treatment in racial and ethnic minorities and other vulnerable populations.

The purpose of this letter is to commend the National Institute of Child Health and Human Development (NICHD) for spearheading efforts to plan and conduct the National Children’s Study (NCS), and to offer some important insight we have learned from representatives of racial and ethnic minority groups about ways in which to improve health data.  Our examination of the myriad ways that federal dollars are spent on the collection of health data, as well as conclusions reached in a report of the Institute of Medicine, Unequal Treatment, and in a workshop report on Improving Racial and Ethnic Data on Health of the National Research Council make clear that improvements are needed in federal data collection efforts in order to provide adequate data for the various racial and ethnic minority groups in the United States.  This is particularly true for many of the geographically distinct or smaller subpopulations of racial and ethnic minority groups.

Over the past two years, the Subcommittee on Populations has held a number of hearings around the country to learn more about the status of available health data, and the accompanying statistical and methodological issues involved in the analyses and dissemination of health data for racial and ethnic minority populations in the United States including the territories.  The Subcommittee prepared letters containing several recommendations to the Secretary that would improve data collection methods, analytic techniques, reporting and dissemination for racial and ethnic minority groups.   The testimony from the hearings underscored a compelling need for innovative approaches to data collection (e.g., targeted surveys) for small groups of racial and ethnic minorities and those who live in sparsely populated areas.  The need for more population-specific data was stressed to address disproportionate gaps in health care outcomes within and across racial and ethnic minority groups.  These letters and other information about the Subcommittee’s work can be found on the NCVHS website at http://www.ncvhs.hhs.gov.

The Subcommittee on Populations invited Dr. Peter Scheidt, NCS Study Director, to present an overview of the NCS to the full Committee of NCVHS on November 6th, 2003. The NCVHS members found the presentation to be enlightening and were appreciative that Dr. Scheidt shared with the Committee the overview of the study.  This important longitudinal cohort study will examine the effects of environmental and other influences on the health and development of more than 100,000 children, from pre-birth to age 21 across the United States.  It is a landmark undertaking with much complexity.

The NCS has the potential to be a rich dataset for answering questions related to children’s health and development.  The NCS stands poised to offer populations in the United States comprehensive child health guidance, interventions and policy directions of a magnitude that could assist the Secretary=s agenda to reduce and eliminate health disparities in racial and ethnic populations.

The NCS study, as shared with us by Dr. Scheidt, has a number of substantive and methodological areas that relate to the work of NCVHS in our advisory capacity to Secretary Thompson.  These include but are not limited to protecting participant privacy and confidentiality, the standardization of data collection and usage of terminology, the inclusion of diverse racial and ethnic subpopulations in adequate numbers for meaningful statistical analyses, the use of language translations to ensure broad participation and the inclusion of social determinants, particularly measures of socioeconomic position and the measurement of health disparities.   Guided by our hearings as well as several of the recent IOM reports, we have identified a number of issues that if addressed early in the planning stages can enhance the recruitment and participation of racial and ethnic minorities as well as provide data that can be used by health planners on behalf of these subpopulations.

The NCVHS recognizes that despite attention of the last decade, the research initiatives on eliminating health disparities are in the early stages of development.  It is because of this early stage of development, the Secretary’s initiatives in the area of health disparities, and the compelling data needs for racial and ethnic subpopulations that the Subcommittee is interested in NICHD=s leadership efforts to establish a cohort study to longitudinally assess the health of children and their families.  We are also interested in the status of preliminary planning work done through work groups and methods for recruitment and retention of specific racial and ethnic minority subgroups.

Health disparities have been documented in several HHS reports.  The elimination of these disparities is a HHS priority initiative and has been highlighted by Congress in a number of pieces of legislation.  The NCS is an excellent vehicle through which much can be learned that can contribute to the reduction and elimination of health disparities. The following points highlight recommendations that we obtained through hearings that may be of use to you as you continue planning for the implementation of this landmark study.

• Use a population health approach to ensure the adequate distribution of the sample of study participants across race, ethnicity, geographic context, and socioeconomic characteristics.
• Use a population health approach to ensure that the sample size is sufficient for analyses of causal relationships particularly for the core hypotheses for all subpopulations of interest.
• Identify and examine causal relationships that include behavioral, social, and economic factors as they interact with biology and the environment.
• Develop a plan for public data use that is timely and allows for broad access.

The NCVHS would appreciate feedback on these issues and welcomes continuing dialogue with its Subcommittee on Populations on how these issues might be addressed.  The NCVHS remains committed to the importance of a population health approach to improving health across the United States.  We will follow the NCS with great interest and would appreciate receiving periodic updates on the progress of the study.

                                                                        Sincerely,

                                                                         /s/

                                                                        John R. Lumpkin, M.D.

                                                                        Chair, National Committee on Vital and Health Statistics

cc:  Edward Sondik, Ph.D., NCHS
Virginia Cain, Ph.D., NIH
Jose Cordero, M.D., CDC
William Farland, Ph.D., EPA
Kenneth Olden, Ph.D., NIH
Peter Scheidt, M.D., NIH
HHS Data Council Co-Chairs