Collection Of Race And Ethnicity Data By Health Plans Has Grown Substantially, But Opportunities Remain To Expand Efforts

Abstract

In 2003 the Institute of Medicine called on health plans to collect data on their members' race and ethnicity as a foundation for improving the quality of care and reducing disparities. We describe the progress made toward collecting these data, the most commonly used data collection methods, and the challenges plans have encountered. We found that from 2003 through 2008, the proportion of plans that collected members' data on race and ethnicity doubled in the commercial market to 60 percent. It increased even more sharply to 94 percent and 83 percent, respectively, for plans covering Medicaid and Medicare Advantage enrollees. However, the scope of data collection varied greatly across plans, and data collection was an organizationwide initiative in a minority of plans. To fulfill the goals of recent legislation, including the Affordable Care Act, health plans will need to expand their efforts. Among other steps, plans and other key stakeholders should agree on uniform race and ethnicity categories, modify information systems to capture these data, and increase members' trust so that self-reported data-the most accurate data on race and ethnicity-can be gathered. R esearchers have documented racial and ethnic disparities in the use and quality of health care for more than two decades. In a landmark report, the Institute of Medicine recommended a comprehensive, multilevel approach to address disparities.1 A key recommendation was that health plans collect and report data on members' race and ethnicity as a necessary foundation for improving the quality of care and reducing disparities. 2 The collection of such data is uniquely important because, in contrast to health care providers, plans can obtain information about members who do not frequently use the health care system.

Using the Bayesian Improved Surname Geocoding Method (BISG) to Create a Working Classification of Race and Ethnicity in a Diverse Managed Care Population: A Validation Study

“…This may be due to limitations, such as infrequent contact with members, added costs of developing the systems to collect such information, perceptions of regulatory prohibitions against collecting race/ethnicity, and discomfort or fear among members in providing it (America's Health Insurance Plans and Robert Wood Johnson Foundation's ; Institute of Medicine ; Escarce et al. ; Weissman and Hasnain‐Wynia ; Gazmararian et al. ).…”

“…Although many health plans are beginning to collect race/ethnicity data more systematically, it is likely to take a substantial amount of time before this information is complete (Escarce et al. ). While self‐report is considered the gold standard (Institute of Medicine ; Gazmararian et al.…”

“…Yet health plans often do not readily have race/ethnicity information at their disposal for a large proportion of their members (High-Value Health Care Project 2010; Weissman and Hasnain-Wynia 2011). This may be due to limitations, such as infrequent contact with members, added costs of developing the systems to collect such information, perceptions of regulatory prohibitions against collecting race/ethnicity, and discomfort or fear among members in providing it (America's Health Insurance Plans and Robert Wood Johnson Foundation's 2004; Institute of Medicine 2009; Escarce et al 2011;Weissman and Hasnain-Wynia 2011;Gazmararian et al 2012).…”

“…Although many health plans are beginning to collect race/ethnicity data more systematically, it is likely to take a substantial amount of time before this information is complete (Escarce et al 2011). While self-report is considered the gold standard (Institute of Medicine 2009; Gazmararian et al 2012), several techniques have been developed to indirectly estimate race/ethnicity where it is unavailable, which would allow for monitoring and evaluation of its role in health care and health research in the meantime (High-Value Health Care Project 2010).…”

Primary Care Physicians' Collection, Comfort, and Use of Race and Ethnicity in Clinical Practice in the United States

“…Within the last 10 years, health plans and medical practices have increased their collection of patients' race and ethnicity data to analyze differences in healthcare utilization and assess the quality of care across different populations. 24–29 The electronic health record meaningful use program 30 , 31 created financial incentives for providers to collect patient demographics, including race and ethnicity. Thus, collection of patient race and ethnicity within health practices has also increased, 24 , 25 and various methods have been used to collect these data.…”