Since the Institute of Medicine (IOM) in March 2002 documented the overwhelming evidence that African Americans, Hispanics and other racial and ethnic minority groups are more likely to receive inferior health care services and medical treatment than whites, health care organizations have begun focusing on this problem.

Eliminating these inequities is essential, especially as the U.S. population becomes more racially and ethnically diverse. While seven in 10 Americans are white, nearly half of the U.S. population will be non-white by 2050. Some of these minority groups experience a poorer overall health status and face a disproportionate burden of chronic and infectious illnesses compared to white Americans.

Racial and ethnic disparities in health care can only be reduced when health care systems are better equipped to identify and address disparities where they occur. Health plans can play a crucial role in tracking the quality of care different patients receive, as well as lead initiatives to improve the care for their members.

According to IOM's Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care, standardized data on racial and ethnic differences in care are unavailable, with many health plans not even collecting data on members' race and ethnicity.

A collaborative study by America's Health Insurance Plans (AHIP) and the Robert Wood Johnson Foundation, "Race and Ethnicity Data Collection by Health Plans," gives us the best picture yet of the progress health plans are making in collecting this information.

To learn more, we interviewed Carmella Bocchino, R.N., M.B.A., senior vice president, medical affairs, and Karen Ignagni, president and CEO, both of America's Health Insurance Plans (AHIP).

An Interview with Carmella Bocchino

Q: In 2002, the Institute of Medicine noted that few health plans collected racial and ethnic identifiers on their members. Were you surprised that two years later more than half of plans are collecting such data?

A: I was not surprised because in 2002 we did some telephone interviews with about 30 health plans for a National Research Council project looking at the collection of race and ethnicity data across the health care system. I was a little surprised at that time. Plans then were beginning to look at the research coming out about disparities. Meanwhile, the Medicare program came out with a set of quality standards asking Medicare plans to look at culturally and linguistically appropriate services. The combination of studies, health plans seeing their populations becoming more diverse, and the Medicare quality standards pushed the plans forward to collect more of this information.

Q: Why is the health plan collection of data on race/ethnicity so important?

A: The importance of the health plan sector collecting this data is to look at population-based medicine programs. This isn't just up to health plans. Health plans are only one group. We need to do this with hospitals, with medical groups, with physicians so that we have a robust system of understanding the population that we serve. It's the responsibility of all of us in the health care sector to learn about these populations, identify who they are, and create the appropriate programs to help them.

Q: What is most notable to you in these findings?

A: For plans not collecting such data, the reasons they gave are the same reasons that we've been hearing for the last couple of years. This means we have targeted reasons, and we should work on addressing them. The reasons include enrollee resistance. So we need to get more information to consumers about why it's important to have this data and how it will be used. We know that consumers need to understand how the information is going to be used before they feel comfortable in giving it. Also, there's a perception in the marketplace that state laws or regulations will not allow for this data collection, and that's not true. There are only four states (California, Maryland, News Hampshire and New Jersey) that don't allow HMOs to collect this information. Plans are also concerned the data wouldn't be reliable because it is self-reported data, and plans are concerned about the lack of standardization when it comes to collecting this information.

Q: Which plans tend to collect these data?

A: Of the responding plans that collect such data, 17.5 percent have enrollment of over 500,000; 30.7 percent have enrollment from 100,000 to 500,000; 40 percent have enrollment between 25,000 and 100,000; and then 11 percent have enrollment less than 25,000.

Q: How are plans collecting these data?

A: Plans are collecting these data by both direct and indirect means. Most plans are using direct methods, such as getting the information through enrollment forms, or as certain members enroll into disease management programs or care management programs. And some plans were collecting this information through indirect methods, such as using ZIP code searches to determine enrollee race and ethnicity.

Q: Medicaid and Medicare plans reported high rates of collecting this information, but commercial plans had lower rates. Why is that?

A: As part of enrollment into Medicaid, the individual is obligated to provide that information. Medicare has that data and they share it with contracting plans. The commercial purchaser tends not to collect these data. I don't find that 51 percent of commercial plans collecting this information to be a poor number, though. I think the challenge is that we still don't have every enrollee in a plan feeling comfortable in reporting this data.

An Interview with Karen Ignagni

Q: Demographic trends suggest that nearly half of the U.S. population by 2050 will be non-white. What does the current disparity in treatment portend if not addressed?

A: Cultural barriers, uneven access to care and practitioners' lack of familiarity with the beliefs and traditions of specific population groups impede access. This creates gaps that put our health care system out of reach for the very individuals who may need it the most. If individuals can't get their needs met, their conditions become more serious, they have forced absences from work and their productivity suffers. The challenge that disparities presents needs to be confronted head on and early to ensure that all Americans can take advantage of the promise of our health care system.

Q: Why is it crucial the health plans collect such racial and ethnic data on enrollees?

A: Health plans design programs to address the needs of their enrolled populations, programs that are targeted to improve outcomes and overall health status. Awareness of the diverse needs of their enrolled populations allows health care providers and health insurance plans to reach out effectively to at-risk populations, and to begin treatment as early as possible.

Q: What is AHIP doing to facilitate the collection of racial and ethnic identifiers?

A: We are continuing to learn more about what is being done and why. Our organization functions as a hub for the exchange of information among our members on best practices for meeting the challenge of health care disparities.

Q: How can people be comfortable in having health plans collect sensitive information on them and feel confident it won't be used against them somehow?

A: We recognize that such perceptions have had an impact on the willingness of certain populations to report their race and ethnic background. However, health plans, hospitals and doctors appear to be doing a better job of explaining how data can be used to improve care. The RWJF survey of consumers demonstrated that when consumers understand how the data are to be used, they will report.

Q: What advice would you give to health plans about collecting these data?

A: Confront misperceptions directly. Explain how information will be used and give individuals the peace of mind that their information will be kept confidential.

Q: How are plans using these data?

A: Most health plans are using the data to design targeted outreach programs for preventive care, to increase translation services - including both written and verbal communications - to assess risk for specific diseases, and to develop other quality improvement programs that may be needed.

Q: How much of a problem is lack of standardization in collecting these data? Does that create a bigger problem, or is the larger issue the non-collection of such data?

A: Both are problems. Our survey indicates that the lack of a standard approach across the health care system has made the collection of information difficult. This is a problem not just for health plans but also for other stakeholders—hospitals and physician groups—who have expressed the same concerns. We need to work together and with the public sector to develop a template for data collection that can be used consistently across the health care system.

Q: What needs to happen once health plans collect these data to have an impact on reducing treatment disparity? What are those steps?

A: Once we have information, we can make it available to health care practitioners for treatment to be targeted to the special needs of individuals and improved. We will be working with the RWJF and Agency for Healthcare Research and Quality later this summer on a "learning collaborative" to broaden the understanding of all stakeholders in the health care industry about the need to collect this data.