Collecting, Using, and Disseminating Health Data on Minority Populations

Community, State, & Federal Perspectives

Presenters: Rose L. Clark, Ph.D., Administrative Clinical Director for the United American Indian Involvement. Lois Haggard, Ph.D., Director, Public Health Assessment for the Utah Department of Health. Olivia Carter-Pokras, Ph.D., Director, Division of Policy and Data, Office of Public Health and Science/Office of Minority Health. Ruth Perot, M.A.T., Executive Director, Summit Health Institute for Research and Education, Inc.

This session described how health data on minority populations is used at the Federal, State, and community levels, and addressed the challenges that individuals at these levels encounter in collecting such data.

Community Perspective

Rose L. Clark described several examples of how communities might use minority health data, including:

• Strategic planning.
• Improving service delivery systems.
• Training providers.
• Supporting grant and policy proposals.

Clark noted that the availability of health data is critical in securing funding for Indian-specific programs to accurately depict population needs and ensure access to available services.

The American Indian/Alaska Native (AI/AN) population is significantly underrepresented in statistical analysis due to inadequate data-gathering techniques. For example, undercounting is caused by misidentification and/or lumping into an "other" category.

Clark offered several recommendations to improve the collection, use and dissemination of race and ethnicity data of AI/AN communities, including:

• Develop a universal form face sheet that can be used by all County agencies to record ethnicity.
• Include AI/AN in reports even when there is no data.
• Oversample and develop special studies on AI/AN.
• Organize frequent communication between agencies to facilitate tracking of clients and avoid duplication and gaps.
• Do not combine AI/AN into "other" categories when collecting and reporting data (except when small sample sizes would compromise statistical significance).
• Obtain support from senior officials to mandate recommendations, including the disaggregating of data by race and ethnicity.

Clark emphasized the importance of developing community relationships and establishing public/private partnerships to improve the collection, use, and dissemination of race and ethnicity data. In building these relationships, Clark believes it is important to:

• Obtain data requests from the community.
• Provide research information that the community can understand.
• Build community capacity to design, plan, and implement their own research that will have longevity and benefit the community.
• Seek community involvement at the decisionmaking level.
• Provide opportunities for those in service delivery to develop their research skills such as through training, research mentorship, or being on staff at a university.
• Engage the community to build/strengthen their capacity to utilize data to increase the quality and quantity of services to the community and to improve outcomes.

State Perspective

Providing a State perspective, Lois Haggard discussed various public health data sources used in Utah, including:

• Notifiable disease reporting (e.g., HIV/AIDS).
• Vital statistics (e.g., birth, death).
• Administrative data (e.g., hospital, emergency department, ambulatory surgery).
• Registries (e.g., cancer, birth defects).
• Surveys such as the Behavioral Risk Factor Surveillance System (BRFSS), Youth Risk Behavior Surveillance System (YRBSS), and other State-sponsored surveys.

She also discussed the major challenges of using race and ethnicity data at the State level, including limited resources for interpreting and reporting data, population estimate challenges due to difficulty in getting timely data for small geographic areas, and the challenges of doing a trend analysis using the new Census race classifications. To overcome these challenges, Haggard recommends that racial and ethnic communities advocate for and negotiate a minimum data set for their State. She also recommended:

• Identifying a "reasonable" set of priority health measures the community wishes to track.
• Identifying whether required data exist for measures.
• Identifying steps to make data available by race and ethnicity where data do not exist.
• Negotiating steps with State health department.

Federal Perspectives

Olivia Carter-Pokras discussed efforts to improve race and ethnicity data at the Federal level. She highlighted some of the Federal initiatives to improve race and ethnicity data, including:

• Minority Health and Health Disparities Research and Education Act of 2000.
• Department of Health & Human Services (HHS) Data Council Working Group on Racial and Ethnic Data.
• HHS Policy for Improving Race and Ethnicity Data.
• Directory of Health and Human Services Data Sources.

Carter-Pokras also discussed Federal efforts to address data quality concerns and listed the 10 priority areas identified by HHS as needing improvement in the collection and use of race and ethnicity data. She described the increasing interest by civil rights and health care communities in addressing and monitoring disparities in health care access and quality and shared highlights of the July 2001 report, Assessment of State Laws and Regulations for Health Insurers and Managed Care Plans, by the National Health Law Program and Office of Minority Health (OMH).

Ruth Perot discussed the findings and recommendations from the September 2001 Commonwealth Fund report, Racial, Ethnic, and Primary Language Data Collection in the Health Care System: An Assessment of Federal Policies and Practices, which she co-authored. Highlights of the report summary and recommendations include:

• The Federal Government's continued and expanded role is critical in collecting minority health data and enforcing existing data requirements.
• State and community advocates have a role to play in communicating the importance and uses of minority health data to decisionmakers at every level.
• State and community advocates who have found creative solutions to the challenges to data collection should share those "best practices" with Federal and State agencies.

Perot identified several uses for Federal race, ethnicity and primary language data. She noted that in over 100 data collection vehicles reviewed across seven HHS agencies, all included fields for race and ethnicity, yet these data are not always collected due to such challenges as:

• Technical issues (e.g., lack of comparability).
• Cost issues.
• Confusion about legality (e.g., racial privacy issues).
• Political will.

She concluded by explaining that while Office of Management and Budget (OMB) standards do not mandate Federal data collection, they do provide a framework for classification that everyone can use.

Additional Resources

Krieger N. Refiguring "Race," Epidemiology, Racialized Biology, and Biological Expressions of Race Relations. Commentary of "Race in Epidemiology" by PD Stolley. International Journal of Health Services 2000;30(1):211-6.

LaVeist TA. On the Study of Race, Racism, and Health: A Shift from Description to Explanation. Commentary of "Race in Epidemiology" by PD Stolley. International Journal of Health Services 2000;30(1):217-9.

National Health Law Program Inc., and Department of Health and Human Services Office of Minority Health. Assessment of State Laws, Regulations, and Practices Affecting the Collection and Reporting of Racial and Ethnic Data by Health Insurers and Managed Care Plans. Draft. Jul. 2001.

Perot R, Youdelman M. Racial, Ethnic, and Primary Language Data Collection in the Health Care System: An Assessment of Federal Policies and Practices. The Commonwealth Fund; Sept. 2001.

Stolley PD. Race in Epidemiology. International Journal of Health Services 1999 29(4):905-9.

Stolley PD. Reply to Commentaries by Drs. Krieger and LaVeist on "Race in Epidemiology" International Journal of Health Services 2000;30(1):221-2.

Utah Department of Health. Bureau of Surveillance and Analysis. Health Status by Race and Ethnicity. Salt Lake City, UT; 1999.

Utah Department of Health. University of Utah. Department of Health Promotion and Education, Research and Evaluation Program. Utah Health Status Survey of Ethnic Population—Qualitative Component; 1997.

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