How Do We Fill the Data Gaps?

 By Olivia Carter-Pokras, Ph.D., Director, Division of Policy and Data


Office of Minority Health, U.S. Department of Health and Human Services


Closing the Gap, Healthy People 2010 and Beyond • August/September 1998


Advocacy groups working to improve the health of racial and 

ethnic minorities have long recognized that without that data 

to document a health problem, it is difficult to draw policymakers’ attention and acquire the resources needed to tackle the problem. As Dr. Nancy Krieger from Harvard University has stated, “If 

you don’t ask, you don’t know. If you don’t know, you can’t act.” 

Healthy People 2000 provides an excellent illustration. When 

the objectives were released in 1990, many problems long recognized 

by affected communities, like low birth weight among Puerto Ricans, 

were not included. In some cases, data had been released too late to be 

used. In other cases, data had been collected but not analyzed. These, 

along with more recent data, were used during the 1995 mid-course 

review to develop new objectives for racial and ethnic minorities. This 

more than doubled the number of objectives for minorities. Even so, 

important health problems were still not addressed during the review. 

There were several reasons: (1) data may have never been collected 

from a national data system, (2) national data systems may have had 

insufficient numbers of a particular group to make reliable estimates 

(e.g., overweight among Native Hawaiians), (3) Puerto Rico, the U.S. 

Virgin Islands and the U.S. Pacific Insular areas generally are not 

included in national data systems, and (4) for the most part, only 

racial and ethnic minority groups with a documented disparity versus 

the total population were included. 

The lack of data is likely to have had a negative impact on availability of resources. Dr. Moon Chen, editor of the Asian American 

and Pacific Islander Journal of Health, examined NIH funding and 

Healthy People 2000, and reported that NIH was much less likely to 

fund AAPI health problems that were not targeted by Healthy People 

2000. All Public Health Service grant announcements refer to Healthy 

People 2000 objectives. 

Several actions have been taken to address these problems. During the mid-course review, data from several national data systems 

were analyzed by race and ethnicity for the first time. Several years of 

data from national databases such as the National Health Interview 

Survey and the National Vital Statistics System were combined to 

provide estimates for relatively smaller racial and ethnic groups. In 

October 1997, the Secretary of HHS issued an inclusion policy for 

racial and ethnic data in HHS data systems. A first for the entire 

Federal government, this policy requires that data systems funded 

and maintained by HHS collect racial and ethnic data, and requires 

that the Federal standards for racial and ethnic data (OMB Directive 

No. 15 and its successor) be followed. 

In July 1998, the National Committee on Vital and Health 

Statistics (NCVHS) convened a public hearing on health data needs 

for Puerto Rico, U.S. Virgin Islands and the U.S. Pacific Insular areas. 

NCVHS will make recommendations this Fall to the Secretary on how 

to address the health data needs for these geographic areas. 

To support the proposed goal of eliminating disparities for Healthy People 2010, draft Healthy People 2010 

objectives follow the Federal standards for racial and 

ethnic data. For objectives for which this recommendation is adopted, 

data will be presented for all racial and ethnic groups, whether or not 

there is a disparity with the total population. Not only will this 

identify missing data for racial and ethnic minorities, but will vastly 

improve access to the data by advocacy groups. 

Despite this progress, data issues still remain for racial and ethnic 

minorities. Relatively smaller groups such as American Indians, Alaska 

Natives, Native Hawaiians and other Pacific Islanders, and certain 

subgroups of Asian Americans and Hispanics will still be represented 

in insufficient numbers by data systems designed to provide estimates 

for the total United States population. Estimates based on data systems which do not routinely use self-identification to collect racial and 

ethnic data (such as mortality data) may significantly underestimate 

the burden of disease, disability and death for certain racial and ethnic 

groups. 

The change in Federal standards for racial and ethnic data will 

affect the monitoring of Healthy People 2010 objectives. After five 

years of research, public comment, and Congressional hearings, the 

Office of Management and Budget released its revision of the Federal 

standards for racial and ethnic data (OMB Directive No. 15) in October 1997. This revision is to be implemented by Federal agencies by 

January 1, 2003. Due to the usual time lags in collection and analysis 

of national data, baselines for Healthy People 2010 objectives will 

likely be from the mid-1990’s, when OMB Directive No.15 was 

used. 

The new standards for racial and ethnic data recommend that 

self-identification be used where possible, allow persons to report 

more than one race, and recommend that Hispanic ethnicity be asked 

as a separate question from race. Based on previous research, it is 

expected that 1-2 percent of the population will report more than 

one race. Guidelines for the implementation of the new standards for 

racial and ethnic data—including comparisons of data collected using 

the old and new standards—are now being developed by OMB. 

Developmental objectives are proposed for Healthy People 2010. 

These are objectives that lack any national baseline data, but are important topics to measure over the next decade. As plans for data 

collection begin, a concerted effort should be made to collect these 

data by the new OMB standards. 

A final issue is how racial and ethnic data are used. OMH encourages readers to help ensure that the right questions are asked, that our 

data systems are adequately funded, and that the data are appropriately used. Racial and ethnic data are descriptive and do not get at the 

underlying reasons behind the disparities. Additional information on 

socioeconomic status, program participation, behavioral risk factors, 

cultural differences, birthplace/generation, and the effects of racism 

and discrimination are needed. Our ability to monitor the health of 

the nation, including the health of our most vulnerable, is dependent 

on the strength and breadth of our data systems.

Office of Minority Health Resource Center U.S. Department of Health and Human Services