Despite advances in medicine, technology, and public health fostering overall improved health in the U.S. over the past century, disparities in health outcomes persist, and some have deepened. On the policy front, the 1980s brought renewed federal effort to secure fair opportunities for improved health for all and a national strategy to identify and reduce health disparities under the Healthy People 2000 initiative (currently Healthy People 2030).1 Federal and state policy work to achieve those aims had been incremental until recent years when advances in data and technology allowed systematic analysis of demographic and socioeconomic differences in how well and how long people live. Measurement of health disparities has evolved to include both differences in health outcomes (such as maternal mortality, infant mortality, heart disease, and life expectancy) and in drivers of poor health outcomes (such as educational attainment, food security, care avoidance due to cost, and economic mobility), leading to the burgeoning work of tying social drivers of health (SDOH), also known as social determinants of health, to broader health policy solutions.2 Undoubtedly, the COVID-19 pandemic crystalized and further accelerated these efforts. Many states employed targeted, community-guided interventions to alleviate disproportionate burdens on target populations and are now building on effective strategies to secure long-term health and economic resilience of communities across their states. The urgency for cost-effective approaches is clear. A recent analysis indicated that unaddressed health disparities carry a substantial economic as well as individual cost — with some estimates at $320 billion annually.3
The bidirectional relationship between healthy communities and healthy economies is reflected in state recovery approaches in a variety of ways. Some states are taking comprehensive whole-government approaches, and others are looking toward stepwise and targeted approaches to address, reduce, or eliminate health disparities. For example, some states are modifying their internal standards of business across government agencies, while others are focused on strengthening data quality, taking community engagement and investment approaches, or by targeting specific disparities and their root causes of disproportionately poor outcomes.
This resource is intended to provide state policymakers with a suite of state approaches to address health disparities — from targeted to cross-agency comprehensive strategies. The strategies are organized into subsections that can be read as stand-alone resources as well as part of the overarching document. The sections are:
- Data Strategies to Understand and Address Health Disparities
- Partnerships to Address Health Disparities
- Shifting the Health Disparities Paradigm
The sections comprise best practices and state examples from a geographically diverse set of states to guide state policymakers to the opportunity that best suits their states’ needs and capacity.
Appendix A provides a glossary of terms used throughout this document and additional tools and resources to support actionable approaches.
Appendices
Appendix A: Glossary of Terms
Braided Funding: Weaving together funding from multiple sources to support a single initiative in a way that each funding source remains distinguishable. Source: Centers for Disease Control and Prevention (CDC)
Health: Health is a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity. Source: World Health Organization
Health Equity: Attainment of the highest level of health for all people, where everyone has a fair and just opportunity to attain their optimal health regardless of race, ethnicity, disability, sexual orientation, gender identity, socioeconomic status, geography, preferred language, and other factors that affect access to care and health outcomes. Source: Centers for Medicare & Medicaid Services
Health Disparities: Preventable differences in the burden of disease, injury, violence, or opportunities to achieve optimal health that are experienced by socially disadvantaged populations. Source: Centers for Disease Control and Prevention
Population Health: The health outcomes of a group of individuals, including the distribution of such outcomes within the group. These groups are often geographic populations such as nations or communities, but they can also be other groups such as employees, ethnic groups, people with disabilities, prisoners, or any other defined group. Source: Institute for Healthcare Improvement
Public Health: The science of protecting and improving the health of people and their communities. This work is achieved by promoting healthy lifestyles, researching disease and injury prevention, and detecting, preventing, and responding to infectious diseases. Source: CDC Foundation
Social Drivers of Health: Drivers that begin upstream with structural discrimination which results in differences in social determinants of health (SDOH), health-related social needs (HRSN), access to care, and, finally, differential quality of care within the health care system Source: Office of the Assistant Secretary for Planning and Evaluation
Unmet Needs: Delay or nonreceipt of needed medical care, nonreceipt of needed prescription drugs, or nonreceipt of needed dental care during the past 12 months due to cost. Source: Centers for Disease Control and Prevention
Appendix B: Compliance — Collecting Race and Ethnicity Data*
Compliance
NOTE: This section is descriptive and not intended to serve as legal advice.
There is growing consensus that accurate and complete collection of race and ethnicity data is a key element to addressing health equity.29 State health policy leaders may consider regulation a barrier to collecting race and ethnicity data in their health equity program development.
Common Misperceptions about Race and Ethnicity Data Collection
There is a common misperception that federal civil rights law prevents states from collecting race and ethnicity data. Title VI of the Civil Rights Act of 1964 (Civil Rights Act) bars discrimination against protected classes in any programs receiving federal funds.30 For several decades, legal scholars have agreed that the Civil Rights Act does not prohibit the collection of data on race and ethnicity. In 2006, the George Washington University School of Public Health stated that the Civil Rights Act “creates no legal liability for health care providers who collect and report health care quality data by race and ethnicity, when such an effort is undertaken as part of an overall program of quality improvement and not as a subterfuge for impermissible purpose under the law.”31
The Patient Protection and Affordable Care Act of 2010 (ACA) also prohibits discrimination against protected persons in health care.32 Further, the ACA strengthens federal data collection by requiring the Department of Health and Human Services to collect data to track health disparities under Medicaid, Medicare, and Children’s Health Insurance Programs.33 Subsequent guidance promulgated under the ACA clarified that data collection is not required in the Medicaid enrollment process and that questions pertaining to race, ethnicity, and language must be clearly identified as optional.34 The ACA’s data collection requirements also do not extend to the private insurance market.35
Data Collection
Many states have specific regulations on the collection of race and ethnicity data. Four states (California, Maryland, New Hampshire, and New Jersey) prohibit the collection of race and ethnicity data on all insurance application forms.36 Five states (Connecticut, Iowa, Minnesota, South Dakota, and Washington) have specified, as part of their prior approval processes for insurance forms, that forms containing any inquiry about the race or ethnicity of an applicant or covered individual will either be disapproved or carefully scrutinized, even though those states do not prohibit the collection of such data.37 Three of those states — Connecticut, Minnesota, and South Dakota — disapprove requests from plans or insurers to collect racial, ethnic, and socioeconomic data. Two of the states — Iowa and Washington — use their prior approval process to scrutinize any request to collect racial, ethnic, and socioeconomic data to prevent harmful uses.
In the above examples, the states’ regulations are aimed at preventing discriminatory redlining and are not intended to be a barrier to collecting race and ethnicity data.38 States with these regulations do permit collection of data on race and ethnicity after enrollment.39 These regulations also do not apply in the context of data collection as part of quality improvement in health care.40 State leaders may consider working with insurance carriers to collect race and ethnicity data post-enrollment in compliance with state regulations.
In addition, each state has its own laws protecting patient health information. State officials may consult state and federal regulations on collecting health information.41 To ensure compliance with these regulations, state leaders may consider including the release of race and ethnicity data in their data-sharing agreements.42 States can look to the interagency data-sharing agreement set forth between the Centers for Medicare and Medicaid Services, Health Resources and Services Administration, and the Centers for Disease Control and Prevention.43
Data Collection Standards
Across federal and state governments, categories for race and ethnicity lack standardization, making data analysis difficult. Currently, the two prominent federal standards used in health care are the standards set by 1997 Office of Management and Budget (OMB) federal rule44 and the 2011 standards by the Department of Health and Human Services (HHS) Office of the Assistance Secretary for Planning and Evaluation.45 A comparison of the two standards is outlined below.
| OMB, 1997 | HHS, 2011 | |
|---|---|---|
| Race* | White | White |
| Black or African American | Black or African American | |
| American Indian or Alaska Native | American Indian or Alaska Native | |
| Asian | Asian, Indian, Chinese, Filipino, Japanese, Korean, Vietnamese, Other Asian | |
| Native Hawaiian or Other Pacific Islander | Native Hawaiian, Guamanian or Chamorro, Samoan, Other Pacific Islander | |
| Ethnicity* | Hispanic or Latino | Yes, Mexican, Mexican American, Chicano/a Yes, Puerto Rican Yes, Cuban Yes, another Hispanic, Latino/a, or Spanish origin |
| Not Hispanic or Latino | No, not of Hispanic, Latino/a, or Spanish origin |
Note: *OMB 1997 and HHS 2011 permit the reporting of more than one race; HHS 2011 also permits people to select one or more ethnicities.
Data: Cara James et al., “Federal Action Is Needed to Improve Race and Ethnicity Data in Health Programs” (Grantmakers In Health and National Committee for Quality Assurance, October 2021).
Source: Cara James et al., “Modernizing Race and Ethnicity Data in Our Federal Health Programs,” To the Point (blog), Commonwealth Fund, October 26, 2021. https://doi.org/10.26099/NZ4R-G375
While neither standard is considered fully complete, the HHS 2011 standard is considered the gold standard for health care.46
References
Introduction
- Dawes, Daniel E. “The Future of Health Equity in America: Addressing the Multiple, Intersecting Determinants of Health.” Ethnicity & Disease, 2019. doi.org/10.18865/ed.29.S2.343.
- “Executive Brief: Health Disparities Report 2021.” America’s Health Rankings, 2021. assets.americashealthrankings.org/app/uploads/2021_ahr_health-disparities-report_executive_brief_final.pdf.
- Rush, Brian, Wendy Gerhardt, Asif Dhar, Jay Bhatt, Neal Batra, and Andy Davis. “U.S. Health Care Can’t Afford Health Inequities.” Deloitte, 2022. deloitte.com/us/en/insights/industry/health-care/economic-cost-of-health-disparities.html.
Data Strategies to Understand and Address Health Disparities
- Reynolds, Andy. “Stratified Measures: How HEDIS Can Enhance Health Equity.” NCQA, 2022. ncqa.org/blog/stratified-measures-how-hedis-can-enhance-health-equity/.
- Pattison-Gordon, Jule, and Editorial Staff. “Digital States Survey 2022: Resident-Focused and Data-Driven.” GovTech, 2022. govtech.com/computing/digital-states-survey-2022-resident-focused-and-data-driven.
- Community Engagement Unit. “Community Engagement Unit Strategic Plan: 2020–2024.” North Dakota Department of Health and Human Services, 2023. hhs.nd.gov/sites/www/files/documents/DOH%20Legacy/Community%20Engagement/Community_Engagement_Strategic_Plan_3-17-2023.pdf.
- Community Engagement Unit. “Community Engagement Unit Strategic Plan: 2020–2024.” North Dakota Department of Health and Human Services, 2023. hhs.nd.gov/sites/www/files/documents/DOH%20Legacy/Community%20Engagement/Community_Engagement_Strategic_Plan_3-17-2023.pdf.
- Community Engagement Unit. “Community Engagement Unit Strategic Plan: 2020–2024.” North Dakota Department of Health and Human Services, 2023. hhs.nd.gov/sites/www/files/documents/DOH%20Legacy/Community%20Engagement/Community_Engagement_Strategic_Plan_3-17-2023.pdf.
- Community Engagement Unit. “Community Engagement Unit Strategic Plan: 2020–2024.” North Dakota Department of Health and Human Services, 2023. hhs.nd.gov/sites/www/files/documents/DOH%20Legacy/Community%20Engagement/Community_Engagement_Strategic_Plan_3-17-2023.pdf.
- U.S. Department of Health and Human Services. “Social Determinants of Health.” Social Determinants of Health-Healthy People 2030. health.gov/healthypeople/priority-areas/social-determinants-health.
- “States Reporting Social Determinant of Health Related Policies Required in Medicaid Managed Care Contracts.” Kaiser Family Foundation, 2021. kff.org/other/state-indicator/states-reporting-social-determinant-of-health-related-policies-required-in-medicaid-managed-care-contracts/?currentTimeframe=0&sortModel=%7B%22colId%22%3A%22Location%22%2C%22sort%22%3A%22asc%22%7D%3B+https%3A%2F%2F; Guth, Madeline and Samantha Artiga. “Medicaid and Racial Health Equity.” Kaiser Family Foundation, 2022. kff.org/medicaid/issue-brief/medicaid-and-racial-health-equity/.
- Dutton, Melinda J., Naomi Newman, Mandy Ferguson, Zerrin Cetin. “In Pursuit of Whole-Person Health: An Update on DOH Initiatives in Medicaid Managed Care Contracts.” Manatt, 2022. manatt.com/insights/newsletters/health-highlights/in-pursuit-of-whole-person-health-an-update-on-doh.
- Dutton, Melinda J., Naomi Newman, Mandy Ferguson, Zerrin Cetin. “In Pursuit of Whole-Person Health: An Update on DOH Initiatives in Medicaid Managed Care Contracts.” Manatt, 2022. manatt.com/insights/newsletters/health-highlights/in-pursuit-of-whole-person-health-an-update-on-doh.
Partnerships to Address Health Disparities
- Bureau of Community Partnerships and Health Equity. “Health Equity Roadmap, Phase 2: Nothing About Us Without Us.” Louisiana Department of Health, 2021. ldh.la.gov/assets/cphe/resources/Health-Equity-Roadmap-Phase2.pdf.
- “Tennessee Covid-19 Health Disparity Task Force Builds Trust to Battle Misinformation.” Centers for Disease Control and Prevention, 2021. cdc.gov/vaccines/covid-19/health-departments/features/tennessee.html.
- “District of Columbia COVID-19 Vaccination Plan.” Government of the District of Columbia, 2021. coronavirus.dc.gov/sites/default/files/dc/sites/coronavirus/page_content/attachments/DC_COVID-19-Vaccination%20Plan_FINAL.pdf.
- “COVID Community Partnership Project 2020–2021: Outcomes of Integrating Community Health Workers into COVID-19 Response Efforts.” Utah Department of Health, Office of Health Disparities, 2021. healthequity.utah.gov/wp-content/uploads/2022/02/CCPProject2020-2021.pdf.
- “Striving Toward Equity Utah’s COVID-19 Vaccine Distribution Roadmap.” Utah Department of Health, 2021. coronavirus-download.utah.gov/Health/Vaccine_Equity_Roadmap.pdf.
Shifting the Health Disparities Paradigm
- “State Strategies for Overcoming Barriers to Advance Health Equity.” Manatt Health, 2020. shvs.org/wp-content/uploads/2020/11/State-Strategies-for-Overcoming-Barriers-to-Advance-Health-Equity.pdf.
- “Handbook for Recruiting, Hiring, & Retention: Applying an Equity Lens to Recruiting, Interviewing, Hiring, and Retaining Employees.” City of Tacoma, Office of Equity and Human Rights, 2015. cms.cityoftacoma.org/OEHR/facilitatingchange/COT_Handbook_for_Recruitment_and_Hiring_October_2015.pdf.
- “State Health Department Organizational Self-Assessment for Achieving Health Equity: Toolkit and Guide for Implementation.” National Association of Chronic Disease Directors, 2014. chronicdisease.org/resource/resmgr/healthequity/he_toolkit.pdf.
- “COVID-19 Ohio Minority Health Strike Force Blueprint.” COVID-19 Minority Health Strike Force and Health Policy Institute of Ohio, 2020. coronavirus.ohio.gov/static/MHSF/MHSF-Blueprint.pdf.
- “Advancing Health Equity: Guide to Language, Narrative and Concepts.” American Medical Association, 2022. ama-assn.org/system/files/ama-aamc-equity-guide.pdf.
- “Advancing Health Equity: Guide to Language, Narrative and Concepts.” American Medical Association, 2022. ama-assn.org/system/files/ama-aamc-equity-guide.pdf.
- “Using a Health Equity Lens.” Centers for Disease Control and Prevention, 2022. cdc.gov/healthcommunication/Health_Equity_Lens.html.
- “Health Equity Zones: A Toolkit for Building Healthy and Resilient Communities.” ChangeLab Solutions and Rhode Island Department of Health, 2021. health.ri.gov/publications/toolkits/health-equity-zones.pdf.
- “Health Equity Zones: A Toolkit for Building Healthy and Resilient Communities.” ChangeLab Solutions and Rhode Island Department of Health, 2021. health.ri.gov/publications/toolkits/health-equity-zones.pdf; “Rhode Island’s Health Equity Zones: A Model for Building Health, Resilient Communities.” Rhode Island Department of Health, 2022. health.ri.gov/publications/factsheets/RIsHealthEquityZones.pdf.
- “Rhode Island’s Health Equity Zone Initiative: Annual Report Executive Summary for the Fiscal Year 2020–2021.” Rhode Island Department of Health, 2021. health.ri.gov/publications/annualreports/2020-2021HEZ.pdf.
Appendix B. Compliance — Collecting Race and Ethnicity Data
- Watson, Sidney D. “Race, Ethnicity and Quality of Care: Inequalities and Incentives.” American Journal of Law & Medicine 27, 2001. pubmed.ncbi.nlm.nih.gov/11467110/.
- 42 S.C. 2000d § 601.
- Rosenbaum, Sara, Taylor Burke, Sonia W. Nath, Jennifer Santos, and Dana Thomas. “The Legality of Collecting and Disclosing Patient Race and Ethnicity Data.” The George Washington University, School of Public Health and Health Services, Department of Health Policy, 2006. hsrc.himmelfarb.gwu.edu/sphhs_policy_briefs/33/.
- Patient Protection and Affordable Care Act, 124 Stat., 2010.
- 42 U.S.C. 2000d § 300kk.
- U.S. Department of Health and Human Services. “Implementation Guidance on Data Collection Standards for Race, Ethnicity, Sex, Primary Language, and Disability Status.” Office of the Assistant Secretary for Planning and Evaluation, 2011. aspe.hhs.gov/reports/hhs-implementation-guidance-data-collection-standards-race-ethnicity-sex-primary-language-disability-0.
- Yearby, Ruqaiijah. “Breaking the Cycle of ‘Unequal Treatment’ with Health Care Reform: Acknowledging and Addressing the Continuation of Racial Bias.” Connecticut Law Review 44, no. 4, 2012. opencommons.uconn.edu/law_review/157.
- National Research Council. “Eliminating Health Disparities: Measurement and Data Needs.” Washington (DC): The National Academies Press (U.S.), 2004. nap.nationalacademies.org/catalog/10979/eliminating-health-disparities-measurement-and-data-needs.
- National Research Council. “Eliminating Health Disparities: Measurement and Data Needs.” Washington (DC): The National Academies Press (U.S.), 2004. nap.nationalacademies.org/catalog/10979/eliminating-health-disparities-measurement-and-data-needs.
- National Research Council. “Eliminating Health Disparities: Measurement and Data Needs.” Washington (DC): The National Academies Press (U.S.), 2004. nap.nationalacademies.org/catalog/10979/eliminating-health-disparities-measurement-and-data-needs.
- Melnick, Daniel and Edward Perrin. National Research Council (U.S.) Panel on DHHS Collection of Race and Ethnicity Data. “Improving Racial and Ethnic Data on Health: Report of a Workshop.” Washington (DC): National Academy Press (U.S.), 2003. pubmed.ncbi.nlm.nih.gov/25057687/.
- Rosenbaum, Sara, Taylor Burke, Sonia W. Nath, Jennifer Santos, and Dana Thomas. “The Legality of Collecting and Disclosing Patient Race and Ethnicity Data.” The George Washington University, School of Public Health and Health Services, Department of Health Policy, 2006. hsrc.himmelfarb.gwu.edu/sphhs_policy_briefs/33/.
- Coleman, Jesse M., Drew del Junco, Gareth A. DeVoe, Kay J. Hazelwood, Kevin J. Mahoney, Candace L. Quinn, Leon Rodriguez, and Robert S. Terzoli. “50-State Survey of Health Care Information Privacy Laws.” SeyFarth Shaw LLP, 2021. seyfarth.com/news-insights/50-state-survey-of-health-care-information-privacy-laws.html.
- Nelson, Amy Hawn, Della Jenkins, Sharon Zanti, Matthew Katz, Emily Berkowitz, TC Burnett, and Dennis Culhane. “A Toolkit for Centering Racial Equity Throughout Data Integration.” Actionable Intelligence for Social Policy, University of Pennsylvania, 2020. aisp.upenn.edu/centering-equity/.
- “Facilitating Collaborations for Data Sharing between State Medicaid and Health Agencies.” Centers for Medicare & Medicaid Services, 1998. hhs.gov/guidance/document/facilitate-data-sharing-between-medicaid-and-health-agencies.
- Office of Management and Budget. “Revisions to the Standards for the Classification of Federal Data on Race and Ethnicity.” The White House, 1997. obamawhitehouse.archives.gov/omb/fedreg_1997standards.
- U.S. Department of Health and Human Services. “Implementation Guidance on Data Collection Standards for Race, Ethnicity, Sex, Primary Language, and Disability Status.” Office of the Assistant Secretary for Planning and Evaluation, 2011. aspe.hhs.gov/reports/hhs-implementation-guidance-data-collection-standards-race-ethnicity-sex-primary-language-disability-0.
- James, Cara V., Barbara Lyons, Philip A. Saynisch, and Sarah Hudson Scholle. “Modernizing Race and Ethnicity Data in Our Federal Health Programs,” To the Point (blog), Commonwealth Fund, 2021. doi.org/10.26099/NZ4R-G375.
Acknowledgement
The authors would like to thank Stephanie Jean-Louis for her work on this guide as a consultant.
