Research Report Collection of Race and Ethnicity Data for Use by Health Plans to Advance Health Equity
Jennifer M. Haley, Lisa Dubay, Bowen Garrett, Clara Alvarez Caraveo, Ilyse Schuman, Katy Johnson, Jason Hammersla, James Klein, Jay Bhatt, David Rabinowitz, Heather Nelson, Becca DePoy
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Evidence of disparate health outcomes by race and ethnicity (R/E), exposed most recently by the COVID-19 crisis, has spurred momentum to reduce health inequities and highlighted health plans’ and other organizations’ need for access to high-quality R/E data as a step toward advancing health equity. Despite being acknowledged as a limitation for decades, R/E data remain incomplete and inconsistent and are not able to be easily shared across different entities in the health care sector, making it difficult to identify and track health inequities and to evaluate efforts to reduce them.

This report is based on a literature review on the status of health plans' R/E data collection and perceived and actual barriers to collecting these data, more than 50 expert interviews, surveys conducted by the Deloitte Health Equity Institute and the American Benefits Council, and the Summit on Race and Ethnicity Data Collection for Health Equity that included 27 stakeholders representing health insurance plans; technology enablers; health care providers; employers; community-based organizations; foundations; and advocacy, public health, provider, and research organizations. We assessed stakeholders’ suggestions for how to improve the collection of R/E data for use by health plans and identified high-priority next steps. This report considers the following questions:

  • What are the opportunities for better R/E data collection to advance health equity?
    • Health plans (including employer-sponsored group health plans) are uniquely positioned to use R/E data to advance health equity. Interviewees and summit participants described various initiatives that health plans could drive at the plan level, including monitoring patterns of access to and use of health care services, health care quality, patient safety, consumer perceptions of care, and health outcomes; more effectively directing health care resources; creating incentives for providers to reduce disparities; publicly reporting on providers' and plans' progress in addressing inequities; and testing algorithms and interventions to avoid bias.
    • Expanded use of R/E data could be valuable for numerous constituent groups. For example, patients could benefit from improved interactions with the health care system and initiatives to address health disparities. Health care providers could gain insights into equitable delivery of health care services. Employers could benefit by making more informed decisions concerning the health plans under which their employees are covered and the providers from whom employees receive services and could ensure benefits are addressing the needs of underserved employees.
  • What solutions could reduce existing barriers to R/E data collection?
    • Build consumer trust and enhance community engagement. Summit participants identified consumer mistrust as a key barrier. They noted that historically marginalized people may worry that providing R/E data will create further harms in the form of discrimination, biological explanations of or blame for inequities, and inappropriate or differential treatment. They recommended various strategies to build and maintain trust with individuals throughout the health ecosystem that could encourage self-reporting R/E data, many of which address specific concerns, including past and present harms by the health care sector and fears about data misuse. Strategies could include incorporating community engagement and trusted community partners in efforts to improve data collection, communicating transparently about the reasons for collecting R/E data, and developing with the community guardrails to ensure data security and patient privacy. Participants also recognized that making the health care system more trustworthy and gaining trustworthiness are processes that will take time and require community engagement, accountability, and long-term commitments, including showing the value of data collection in reducing inequities.
    • Reduce legal concerns and uncertainty. A legal analysis conducted as part of this project found no state and federal laws that bar employers, third-party administrators, and group health plans from collecting and sharing R/E data for a permitted purpose, such as reducing health disparities. However, employers are hesitant to do so because of a lack of clarity around legality and permissibility. Summit participants identified the need for stronger signals from federal and state governments clarifying the legality of collecting and sharing R/E data.
    • Update and standardize self-reported R/E data collection practices and build consensus on the roles of plans, providers, employers, and the government in collecting and sharing data. Stakeholders maintained that outdated, inconsistent standards limit progress in data collection and use. For instance, current R/E response categories limit the extent to which people see their own identities reflected when asked about their R/E, which may reduce their interest in responding. Stakeholders also offered perspectives on the role of providers and health systems, employers, state and federal agencies, and health plans in the collection and storage of such data. They contended that federal leadership with community input is needed for developing more inclusive standards for self-reported, voluntary R/E identification that reflects community identities; moreover, such transformation should include investments in updated, interoperable data systems.
    • Prioritize organizational capacity and provide sufficient resources to collect, analyze, share, and use R/E data. Participants suggested that better communicating the value of improved R/E data collection and a showing the feasibility and value of data collection in reducing disparities could help encourage cultural shifts within organizations toward data collection, but adequate resources for technological tools and training for frontline workers would be essential.
  • What needs to happen now to jumpstart action?
    • Multisector stakeholders need to begin working together immediately (but it will take time to achieve needed results). 
    • Individual reporting must remain voluntary, and organizations collecting data should be adequately resourced. 
    • Government agencies, health plans, employers, and individuals must work together to develop guardrails that ensure data security and patient privacy and prevent harms to historically marginalized groups.

In addition, the above actions would ideally include updated federal data standards and clear federal guidance, health plan engagement with communities, distribution of sufficient resources for staffing and necessary technical updates, and multisector advocacy. Input from summit participants and interviewees also helped guide the creation of a resource found in an appendix to this report that includes a detailed analysis of whether any federal and state laws are legal barriers to the collection, storage, use, or disclosure of R/E data. Stakeholders also emphasized that R/E is just one element of long-standing structural inequity and that additional factors such as sex, sexual orientation and gender identity, immigration status, language, and disability status, as well as intersections of those identities, will also be important to assess. Moreover, improvements in R/E data collection will need to be accompanied by changes specifically designed to eliminate racial and ethnic disparities in health care experiences and outcomes.

Though improved data collection alone will not solve long-standing racial and ethnic health disparities, summit participants and other key stakeholders viewed it as a critical step. As one interviewee stated, the absence of data hides injustices in systems of care. Many stakeholders expressed the urgency of this moment and the critical need for simultaneous, multisector action, supported by sufficient resources, that not only identifies disparities but is followed by interventions to close equity gaps.

Research Areas Race and equity Health and health care
Tags Health equity Health care systems and managed care plans Health insurance Private insurance Medicaid and the Children’s Health Insurance Program  Racial and ethnic disparities
Policy Centers Health Policy Center
Research Methods Qualitative data analysis