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A lack of comprehensive statistics on racial disparities in health care is a serious stumbling block for federal agencies tasked with solving the problem, according to researchers.

Disproportionate rates of death and illness within African American, Latino and other minority communities have been the subject of federal and state initiatives for many years. Nevertheless, health care providers remain confused about the legality of gathering race-based data and still lack a uniform system to assess available statistics.

"Although it is already required by many federal programmes, the federal government does not enforce requirements to collect racial, ethnic and primary-language data," said Mara Youdelman, a researcher with the Washington-based National Health Law Programme and co-author of a recent report on the subject published by the New York-based Commonwealth Fund.

The US public health care system has made concerted efforts to address the problem of racial and ethnic disparities since 1985, when the "racial health gap" was first documented at the federal level by the Department of Health and Human Services (HHS).

Some 16 years later, no single office within HHS - nor at any other agency - is responsible for co-ordinating this kind of data collection, researchers found.

Youdelman emphasised that racial, ethnic and primary-language data is fundamental in evaluating how minority communities compare with the population as a whole in receiving necessary health care.

Poor access to treatment

Some of the disparities are striking. African American women are 67 percent more likely than white women to die from breast cancer. African Americans are 40 percent more likely to die from heart disease than white Americans. Among the factors responsible for the difference is relatively poor access to prevention and treatment services for African Americans.

Olivia Carter-Pokras, director of the Policy and Data Division of the Office of Minority Health, part of HHS, says that statistics for African Americans tend to be highly accurate, but those for groups like Asians, Native Americans and Latinos are less so.

Although the mission of the Office of Minority Health is to improve the health of certain racial and ethnic populations, it does not develop its own statistics. Instead, it relies on raw data provided by federal, state, and non-governmental organisations. One problem with this is that there is no single data classification system.

"With the data coming from federal sources, we have greater control and can design the questions being asked. The data coming from other sources, we do not have as much control," said Carter-Pokras, adding that HHS cannot simply mandate data collection policies to sources outside the agency.

Another problem, according to Youdelman, is that although statistics exist for disparities between minorities and the general population, accurate data on the actual health status of different populations generally is lacking.

Lack of enforcement

Her report, written with Ruth Perot of the Washington-based Summit Health Institute for Research and Education, found problems with data collection at nearly every level. However, Youdelman said the biggest challenge is the lack of enforcement of existing data collection and reporting policies.

Youdelman noted that some doctors and even government workers remain concerned about the legality of acquiring data on race and ethnicity - although this is perfectly legal under Title VI of the federal Civil Rights Act of 1964.

The report recommends that HHS expand education programmes explaining the need for this data and showing how it will promote better health care in communities. This outreach would target public and private agencies, bureaucrats, doctors, and patients.

Some members of the medical community have argued that collecting statistics on race, primary language and ethnicity would be prohibitively expensive. The government's Centre for Medicare and Medicaid Services (CMS), however, has said the cost would be minimal.

Youdelman urged the federal government to take the lead in funding and carrying out data collection and worried that if this were left in the hands of private insurance companies and the states, the same problems - primarily, a multitude of reporting systems - would persist.

The National Academy of Sciences is conducting a comprehensive study of HHS's data collection practices. The Office of Minority Health awaits its recommendations.

"We are doing data collection much better than in the past," Carter-Pokras said. "There is a greater awareness of the need to collect the data to ensure civil rights. We are further than we have been and are combating problems one by one, working through the law."