Collecting data on diverse communities: Challenges and successes from health plans, hospitals, and health departments

Americans receive health care services that are in sync with the latest scientific evidence only about half the time. Studies also find that racial and ethnic minorities in the U.S. receive a lower quality of care than non-minorities and are at greater risk for certain diseases. There is a widespread agreement that valid and reliable race and ethnicity data are fundamental building blocks to identifying racial and ethnic disparities, to developing programs that close the gaps in care, and to ensuring a higher standard of care.
In 2006, America’s Health Insurance Plans (AHIP) and the Robert Wood Johnson Foundation (RWJF) collaborated to conduct a follow-up survey to assess the extent to which health plans collect and use race, ethnicity, and primary language data; highlight barriers to the collection of these data, and identify any trends and major differences from a previous survey conducted in 2003.

Findings, Innovation and Measurable Success:
In 2006, 156 of 260 targeted health plans responded, resulting in a 60% response rate and representing 87 million covered lives. According to the survey findings, 67% of enrollees were represented by health plans that collected race and ethnicity data, compared to 54% in 2003. Health plans have made significant progress in collecting race and ethnicity data to identify differences in treatment, medication adherence, and prevalence of enrollees’ chronic conditions that can be improved and managed through preventive and educational measures. Three major reasons why plans collect race and ethnicity data are to support language and culturally appropriate communications to enrollees, identify racial and ethnic disparities in health, and to implement or strengthen quality improvement efforts. In addition, the survey findings demonstrate that commercial plans are offering language access services at the same rates as Medicare and Medicaid plans.  The lack of good or reliable method for data collection continues to be a major concern among respondents that do not collect these data.
Replicability and Lessons Learned:
Health plans are using race, ethnicity, and primary language data to develop a number of strategies to improve access to culturally and linguistically appropriate health care through the development of interventions that address specific chronic conditions that disproportionately affect diverse populations.  Examples of these efforts, such as the use of cross cultural training for providers and health insurance plan staff to improve access to care, will be highlighted as replicable examples for other health care organizations. Additional research on “strategies that work” among different populations is needed, including the need for standardization of data collection and uniformed data categories.

Take-Home Tools and Resources:
AHIP will discuss a series of tools that were developed to address disparities and assist health plans, and other health care organizations, with collecting data, improving cultural competency training, communication messaging, and strengthening quality initiatives that are culturally and linguistically appropriate for all Americans.