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Data collection important step in fight against racial, ethnic disparities

Racial and ethnic disparities in health are costing lives and money as minorities face barriers to wellness that result in higher levels of chronic care and mortality rates and lower quality of care than white Americans.

The reasons for the barriers are often debated and can be language-related, structural, financial, or discriminatory. Overcoming these challenges in healthcare will only become more critical: The census bureau predicts that half of Americans will be a member of a racial or ethnic minority group by 2050.

Experts in the field believe that in order to provide proper healthcare to those in minority groups and keep costs under control, the healthcare industry will need to adopt programs to help better understand racial and ethnic populations. Several groups have developed suggestions that could help bridge the disparity gap. One of the nation’s leaders in promoting the need to deal with the healthcare of minorities is the Center for Health Care Strategies, Inc. In August, the nonprofit released From Policy to Action: Addressing Racial and Ethnic Disparities at the Ground Level by January Angeles and Stephen A. Somers, PhD. The report provides the following recommendations regarding opportunities to address disparities:

  • Strengthen and standardize efforts to collect information about enrollees’ race and ethnicity
  • Incorporate disparities reduction goals and objectives into health plan and provider contracts
  • Link monetary incentives to initiatives to reduce disparities
  • Analyze utilization and performance data by race and ethnicity to identify disparities and target patient and provider interventions
  • Increase access to culturally and linguistically appropriate care
  • Develop community-based strategies to reach out to minority members

The authors wrote that “it is now time to move beyond documenting disparities and to focus our efforts on actionable steps to eliminate them.” They added a “comprehensive, multistakeholder strategy” is needed in order to battle the problem. Managed care organizations have the opportunity to lead because they can “create systems that better coordinate care, reach out to members in need of preventative care services, provide health education, and support physicians in their networks.”

The first step in bridging the racial and ethnic disparities gap in healthcare is collecting data. “If you don’t have this information, then you can’t see where the disparities are or if they exist. You can’t target interventions effectively,” says Angeles. Having data about beneficiaries’ ethnic and racial backgrounds allows health plans to better understand their members’ healthcare needs and status, plan programs to address identified care needs, and set priorities.

The authors note that establishing standards in collecting racial and ethnicity data would be a step forward. Currently, those who are collecting data use different race and ethnicity categories, which can make it difficult to combine information from multiple sources.

Rather than create a separate coding program, the authors suggest following existing guidelines for data collection, such as the uniform framework developed by the Health Research and Educational Trust (HRET), for collecting and reporting this information in hospitals.

One barrier to racial and ethnicity data collection is the misconception that it is illegal.

Thomas LaVeist, PhD, director of the Hopkins Center for Health Disparities Solutions at Johns Hopkins Bloomberg School of Public Health in Baltimore, says the myth probably came about because some states forbid home insurance companies from collecting data about race because of concerns about them being used to discriminate. This was mainly for homeowner’s insurance.

“It’s used as a reason to not collect data on race—inappropriately so,” says LaVeist about the misconception that data about race and ethnicity are not allowed in healthcare. Managed care companies that do not collect such data can’t determine whether there is a problem, says LaVeist. “You don’t actually know if they have disparities in the health system because they are not collecting the data.”

A handful of health plans collect racial and ethnicity information from members who provide it voluntarily. The first health plan to collect the data was Aetna, which has this information for more than 5.2 million members (about one-quarter of its members). Staff members collect the data through enrollment forms and Aetna’s Web site, Aetna Navigator.

Wayne Rawlins, MD, of Aetna’s racial and ethnic equality program, says racial and ethnicity data are used only to improve member healthcare. In fact, Aetna created stringent guidelines for any Aetna employee who seeks to use the race and ethnicity information. A committee, which includes Rawlins, reviews internal applications to ensure that the data are used strictly to benefit health programs. In addition to telling members the information will only improve healthcare, Aetna officials show the benefits of data collection by implementing programs that tackle the issue. “You reassure people by putting the comments into action,” says Rawlins.

As a member of the National Health Plan Collabo-rative, Aetna is working with nine other health plans, totaling 87 million members, to establish standards for collecting and using race and ethnicity data.

For those who are not ready to ask members about their race and ethnic background, there are indirect methods, such as geocoding (a way to assign geographic identifiers) and surname analysis, that provide a rough marker of a member’s racial and ethnic background.

Although commercial insurers would need to create new mechanisms to collect data about race and ethnicity for their members, Medicaid health plans have data about beneficiaries’ racial and ethnic backgrounds from their state agencies. The authors believe Medicaid is “an ideal venue for addressing disparities”—given that it serves about 52 million beneficiaries and is the “largest provider of health insurance for minority populations, covering at least one in five nonelderly Hispanics and African-Americans compared to one in 10 whites.”

Given those numbers, the authors believe the federal government has a “vested interested in reducing racial disparities in healthcare delivery” and called Medicaid “an important catalyst for efforts to eliminate racial and ethnic disparities.”

Cultural competence

Health plans communicate better if they know their members’ languages and backgrounds. Not communicating properly can lead to medical error. Some minority communities have difficulties with medical terms and health numeracy. By knowing the audience, health plans can create programs that reach out to those populations. “It is really important that cultural competency is a large part of how to address disparities,” says Angeles. “A lot of difficulties in quality, I think, can be attributed in the ways that [people of different] racial and ethnic backgrounds communicate.”

Cultural competence means health plans must understand the background but doesn’t necessarily need to have employees from the same background.

“It’s important to learn that you need to treat everyone the same and acknowledge the value of their contributions,” says Joyce Page, MSPH, MPH, director of Project DIRECT, a North Carolina–based program that targets diabetes in the African-American community of southeast Raleigh, NC. “The person you select to come into the community should be sensitive to the community and respect their contribution.”

“You need people who are literate in the culture you are trying to reach who will understand the nuances and interpret people’s behavior a little better because they understand the unique cultural aspects,” says LaVeist.

LaVeist says there is an issue of health literacy, which he describes as being literate about the management and maintenance of health. Patients have better outcomes when they are better educated about how to maintain good health and manage conditions, he says.

“We sometimes think that for Americans, if we give them a brochure about the condition they have, they will read the brochure and understand it,” says LaVeist, but minority populations might not understand the language or may have culturally different conceptions of the disease process. As a way to teach healthcare providers and their clinical employees about racial and ethnic communities, Aetna offers them free access to online courses called “Quality Interactions: A Patient-Based Approach to Cross-Cultural Care.” One of the tools is a physician-focused video called Crossing the Health Care Gap. The video explores three cases: that of an African-American woman, an Asian man, and a Hispanic woman.

By seeing healthcare through their eyes, professionals are able to better relate to their patients. Another critical way is through one-on-one communication. For instance, if a physician is not able to communicate effectively with a patient and her caregiver about her diabetes, care will suffer. “We believe that doctors and nurses are better able to care for our members than if they had not taken the course,” says Rawlins.

Getting community involved

Experts in healthcare disparities say insurers must tailor interventions to the community’s needs and understand the cultural values when creating programs.

“When implemented well, managed care organizations partnering with community-based organizations and health workers gain the ability to effectively reach populations that would otherwise be underserved,” according to the Center for Health Care Strategies report. One program that has been successful in making connections with a minority community is Project DIRECT.

In response to the disparities issue, the Centers for Disease Control and Prevention (CDC) in the 1990s sought proposals for programs that would tackle the problem. Project DIRECT, a partnership between southeast Raleigh, North Carolina’s Department of Health and Human Services’ Division of Public Health, Wake County Human Services, and the CDC, began community interventions (diabetes prevention and control activities) in 1996. Project DIRECT involved the community in planning and monitoring the program from the start, including a 13-member executive committee. By getting that buy-in, says Page, the project was able to make inroads into the community. “I can say with great confidence that if not for the community, the program would not have survived. It was the glue that held it together,” says Page.

The community participated in reviewing and evaluating the plan. The feedback included tweaking the literature to make it more culturally appropriate, such as changing phrasing and removing technical terms.

Project DIRECT uses the church, a common thread within the southeast Raleigh community, to reach out to residents. “When we did a preliminary study with focus groups, people told us that they would listen to messages from their ministers on health issues. Therefore, church outreach efforts were very important,” says Page.

In addition to getting the support of ministers, Project DIRECT conducts nutrition workshops with church kitchen committees about nutrition and established walking groups in churches and other community organizations.

Page estimates more than 6,000 community members (about one-quarter of the target population) have taken part in Project DIRECT programs, including screenings, workshops, and walking events. She adds the number of people actually reached by Project DIRECT is unknown because many of those who took part in activities returned to their families and friends and passed on the word about diabetes and health. “We reached more people than walked through our doors,” says Page.

Bottom line

As the nation becomes more diverse, addressing health disparities will only become a larger economic concern.

Angeles believes improving the quality of care to reduce disparities has the potential to save health plans money by reducing inappropriate utilization. Once savings are found, health plans will be more apt to tackle the issue of healthcare disparities.

“If plans can demonstrate that they’re getting a positive return from these interventions, then it gives them leverage to expand new interventions,” says Angeles.

The healthcare system is being called upon to develop ways to bridge the gap while improving care and keeping costs under control.

“The country is becoming very diverse quickly,” says LaVeist. “All of the social problems in society ultimately end up in the treatment room. We’re just not set up for all these cultural issues, but the implications for the ability to maintain a high level of quality in healthcare dispensing is immense . . . It’s important to keep an eye on that and stay ahead of the curve and make the appropriate adjustments to control costs and also keep quality high.”