State Health and Value Strategies (SHVS), in partnership with Manatt Health, Health Equity Solutions, Georgetown’s Center on Health Insurance Reforms (CHIR), the State Health Access Data Assistance Center (SHADAC), Bailit Health, and GMMB, developed this resource page to serve as an accessible “one-stop” source of health equity information for states. This resource is designed to support states seeking to make coverage and essential services available to all of their residents, regardless of where they live, how much money they make, or discrimination they face. SHVS will update this page frequently with new resources as they become available.
The Massachusetts Quality Measure Alignment Task Force recommended a health equity measure accountability framework and a set of data standards for use by all payers and providers across the Commonwealth in global risk-based contracts. The framework outlines principles for developing and implementing key contractual measures, and the data standards specify which data points payer and provider organizations need to track, as well as how data should be collected. The recommended framework and data standards go into effect on January 1, 2023. The Task Force endorses implementation of the race, ethnicity, and language data standards within one year of the effective date (January 1, 2024) and implementation of the disability, sexual orientation, gender identity, and sex data standards within two years of the effective date (January 1, 2025).
A brief from the Urban Institute assesses the extent of limited English proficiency (LEP) among Asian American and Native Hawaiian/Pacific Islander (AANHPI) nonelderly adults and variation in LEP across AANHPI subgroups, using the most recently available data from the American Community Survey. A lack of language accessibility for AANHPI people who are not proficient in English, in particular, could restrict their access to health insurance and healthcare, especially for those who may have to navigate complicated systems to enroll in coverage.
Superintendent of Financial Services Adrienne A. Harris issued a mandatory request for information (RFI) to health insurers to understand the scope and impact of their programs aimed at reducing health disparities. Pursuant to Section 308 of New York Insurance Law, DFS is requesting information and documentation on race/ethnicity and language data collection efforts, health equity programs, and related workforce initiatives.
This issue brief documents how REL data are collected by the Medicaid programs in the 50 U.S. states, the District of Columbia, and five U.S. territories. This serves as an update to SHADAC’s previous brief, providing up-to-date information on Medicaid REL data collection among the states and extending the analysis to include the District of Columbia and the five territories.
The CMS Office of Minority Health published The Path Forward: Improving Data to Advance Health Equity Solutions, a blog post which outlines a plan to tackle health equity data efforts across CMS programs to achieve health equity by underlining the importance of health equity data collection and chart the next steps for CMS to improve data collection efforts.
The Centers for Disease Control and Prevention (CDC) released data which shows that more than 80% of pregnancy-related deaths in the U.S. are preventable. The data, collected from Maternal Mortality Review Committees in 36 states between 2017 and 2019, found mental health, including suicide and substance use disorder, was the leading underlying cause of death in 23% of cases. More than half of pregnancy-related deaths occurred between one week and one year after delivery. The data also reveal chilling disparities—American Indian and Alaska Native people suffered the most preventable deaths, and a full 93% of the total deaths in these groups were considered avoidable. Cardiac and coronary conditions were the leading underlying cause of death among non-Hispanic Black people, who also suffer hugely disproportionate rates of deadly pregnancy complications.
The Office of Management and Budget (OMB) announced a formal review to revise OMB’s Statistical Policy Directive No. 15: Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity. This Directive provides minimum standards that ensure the federal government’s ability to compare race and ethnicity information and data across federal agencies, and also helps to understand how well federal programs serve a diverse America. Earlier this year, Dr. Karin Orvis, Chief Statistician of the United States, convened an Interagency Technical Working Group of federal government career staff representing over 20 agencies across the federal government, including almost every CFO Act agency and recognized statistical agency that collect or use race and ethnicity data, as well as the Equal Employment Opportunity Commission. The Working Group has begun developing a set of recommendations for improving the quality and usefulness of federal race and ethnicity data and now invites public input through virtual, bi-monthly listening sessions. These listening sessions will begin Thursday, September 15, 2022.
The Minnesota Department of Health released its first-ever Minnesota Maternal Mortality Report, which examined maternal deaths during or within one year of pregnancy from 2017 to 2018. While the report shows the state’s overall maternal mortality rate is lower than the national average, it also shows stark disparities in mortality—especially among Black and American Indian Minnesotans. Black Minnesotans represent 13% of the birthing population but made up 23% of pregnancy-associated deaths, and American Indian Minnesotans represent 2% of the birthing population, but 8% of pregnancy-associated deaths.
Data Across Sectors for Health (DASH), together with the Center for Health Care Strategies (CHCS) and with support from the Robert Wood Johnson Foundation, is leading a national initiative, Learning and Action in Policies and Partnerships, to test new ways to support community-based data-sharing efforts. The first cohort included six communities—in Arizona, Connecticut, Rhode Island, South Carolina, Washington, D.C., and Washington—that sought to strengthen relationships between communities and state agencies to address health equity priorities via data-sharing efforts. A recently published issue brief shares lessons from these six pilot sites to help guide additional states and community-based organizations (CBOs) in enhancing community data-sharing capabilities and fostering relationships between state governments, CBOs, and community members with lived expertise.
State health officials are recognizing that marketplaces and participating insurers can help reduce health inequities. A first step is for marketplaces to improve data collection of enrollees’ race and ethnicity. A new blog post from the Commonwealth Fund authored by researchers at Georgetown University reviews current data collection of race and ethnicity among state-based marketplaces. In the post, the researchers highlight how changes to the application process and working with insurers to fill gaps, state-based insurance marketplaces can improve their collection of information on race and ethnicity.
Governor DeSantis signed into law HB 855 which establishes reporting requirements for managed care plans to begin stratifying data by age, sex, race and ethnicity. The new data reporting requirements will take effect in 2025.
The Centers for Disease Control and Prevention released a report on maternal mortality rates for 2020 that documents a 14 percent increase in the number of maternal deaths between 2019 and 2020. The inequities within the report were stark: Black women experienced the most deaths as one-third of the pregnant women and new mothers who died in 2020 were Black, though Black Americans make up just over 13 percent of the population.
Large percentages of race and ethnicity data are missing from federal and state health programs. To identify the barriers and opportunities, Grantmakers In Health, in collaboration with the National Committee for Quality Assurance, interviewed a variety of stakeholders across the country, representing all levels of the health system. The second of two reports, Improving Data on Race and Ethnicity: A Roadmap to Measure and Advance Health Equity, builds on an earlier report, Federal Action Is Needed to Improve Race and Ethnicity Data in Health Programs, by providing more details about race and ethnicity data collection in federally administered health programs and an expanded list of recommendations for improving the data.
To identify the barriers and opportunities, Grantmakers In Health, in collaboration with the National Committee for Quality Assurance, interviewed a variety of stakeholders across the country, representing all levels of the health system. The first of two reports, Federal Action Is Needed to Improve Race and Ethnicity Data in Health Programs, identifies tangible actions to help improve the completeness, accuracy, and usability of race and ethnicity data.
Public health data should reflect the needs of everyone in America—regardless of their race, where they live, or how much money they have. The National Commission to Transform Public Health Data Systems share recommendations.
Thirteen million people identify as part of a sexual or gender minority (SGM) in the United States, and an estimated 1.17 million of those SGM adults (age 18-64 old) have Medicaid as their primary source of health insurance. Although there has been increasing recognition over the last decade that sexual orientation and gender identity (SOGI) are important determinants of health, the recent coronavirus (COVID-19) crisis has amplified the stark health disparities that many vulnerable populations face. Despite gaps and inconsistencies in state and federal reporting on COVID-19, data continues to show that Black, Indigenous, and other people of color (BIPOC) have been disproportionately impacted by both higher risks of infection and poorer health outcomes. However, health-related data about SGM populations is particularly scarce. This brief documents how information describing SGM populations is currently collected at the federal level and in Medicaid. The brief also spotlights Oregon’s recent efforts to improve the collection of SOGI data, and present several issues that states should consider as they look to improve their collection of SOGI data in Medicaid.
Many states are looking to fill gaps in race and ethnicity data for Medicaid and related agencies. Working with the State Health Access Data Assistance Center (SHADAC) at the University of Minnesota, with support from the State Health and Value Strategies (SHVS) program, New York tested multiple strategies aimed at encouraging applicants to answer the optional race and ethnicity questions. This expert perspective highlights an effort by New York’s official state-based marketplace, NY State of Health, to improve the completeness of race and ethnicity data that applicants share when applying for Medicaid; Child Health Plus, the state’s Children’s Health Insurance Program (CHIP); the Essential Plan, New York’s Basic Health Program (BHP); or Qualified Health Plan (QHP) coverage through its Marketplace.
Governor Michelle Lujan Grisham signed an executive order directing executive state departments to begin collecting voluntary self-identification information pertaining to sexual orientation and gender identity. The order will enhance the capacity of state agencies to address health disparities and identify and remove barriers to effective care for non-conforming and traditionally undeserved individuals, as well as enhance services and outreach.
A new report released by the Funders Forum on Accountable Health and the California Accountable Communities for Health Initiative (CACHI) reveals how the Accountable Communities for Health (ACH) model is emerging as an important vehicle for improving population health and health equity. ACHs recognize that health is the result of interdependent factors at work in a community and that no single entity controls all the levers. This model brings together health care providers, public health departments, schools, social service agencies, and others, along with residents in a collective effort to make a community healthier, more equitable and resilient. The report and a companion executive summary provides an alternative framework for defining and assessing value that moves beyond the traditional “Return on Investment (ROI)” and captures the transformational nature of the ACH. It identifies three key roles that ACHs play in the community and provides in-depth case studies to demonstrate each role. This new framework will be discussed during a webinar on “Lessons Learned from the Accountable Community for Health Model.” The webinar will take place on August 24, and is part of a new webinar series that seeks to identify key lessons for scaling this model as policy makers across the country increasingly endorse multisector collaboratives focusing on equity as a way to better address social determinants of health.
This document promotes a set of uniform data collection standards for race and ethnicity information conducted by, sponsored by, or reported to the Utah Department of Health (UDOH).
The purpose of this report is to highlight existing health disparities by race/ethnicity in Nevada, with a focus upon the most current data available. The race/ethnic groups represented in this report are White-non-Hispanic, Black-non-Hispanic, American Indian/Alaskan Native (AI/AN) -non-Hispanic, Asian/Pacific Islander (API) -non-Hispanic, and Hispanic. Racial and ethnic minorities are disproportionately affected by health problems and disease in Nevada and throughout the nation. This report is intended to present current and available data, from the state of Nevada, broken down by race/ethnicity and region, in order to inform health professionals, policy makers, community members, and researchers about existing disparities among Nevada’s population.
The KFF COVID-19 Vaccine Monitor is an ongoing research project tracking the public’s attitudes and experiences with COVID-19 vaccinations. Using a combination of surveys and qualitative research, this project tracks the dynamic nature of public opinion as vaccine development and distribution unfold, including vaccine confidence and acceptance, information needs, trusted messengers and messages, as well as the public’s experiences with vaccination.
This issue brief documents how states are collecting information about race, ethnicity, and language on their Medicaid applications. The information presented here draws from the State Health Access Data Assistance Center’s (SHADAC’s) review of 50 states’ paper Medicaid applications and 33 states’ online Medicaid applications. For this resource, the authors provide an overview of REL data collection standards and examine state Medicaid application’s question structure, answer options, and instructional language. They also provide an overview of the frequency of different iterations of questions and responses and provide state examples to illustrate common and unique data collection practices.
A free-to-use data and visualization platform that provides insights into the impact of COVID-19 on marginalized groups in the United States. It records COVID-19 cases, deaths, and hospitalizations nationwide across race and ethnicity, sex and age, as well as by state and county. The tracker also measures comorbidities associated with COVID-19, including COPD, diabetes, and social and political determinants of health, including uninsured and poverty rates.
Governor Ralph Northam unveiled new public statewide health equity dashboards, providing a snapshot of the Commonwealth’s COVID-19 response and recovery efforts and making key data more accessible to Virginia residents. The Equity-in-Action dashboard is a snapshot of the progress Virginia has made across our COVID-19 response and recovery programs and other initiatives that advance the equitable distribution of resources and services. The Equity-at-a-Glance dashboard is a transparent assessment of social determinants of health and other factors contributing to health equity (accessible via the right-side panel). Future versions of these dashboards will include an expanded set of topic areas, such as workforce diversity and criminal justice metrics.
The rollout of vaccines designed to end the coronavirus (COVID-19) crisis has begun in earnest across the United States. Currently, each state is responsible for determining how to allocate, distribute, track, and report its vaccine allotment from the federal government, although the federal government is expected to take on a larger role under a new Biden administration. Since the beginning of the pandemic, Black, Indigenous, and other people of color have been disproportionately impacted by both higher risks of infection and poorer health outcomes, and many are concerned that an inequitable or inefficient distribution of the COVID-19 vaccine may further widen health inequities among these populations. One way to help ensure the equitable administration of COVID-19 vaccine is to track vaccine administration disaggregated for key subpopulations, such as gender, race and ethnicity, and geography (e.g., urban vs. rural). This expert perspective reviews the data states are currently publicly reporting related to vaccine administration and provides an interactive map that explores the extent to which all 50 states are reporting vaccine administration data breakdowns by age, gender, race, ethnicity, provider type, and level of geography. The expert perspective also discusses what current data sources states are using to provide this information and provides an overview of options states can consider to collect information about the administration of COVID-19 vaccine in populations via survey data.
The Centers for Disease Control and Prevention (CDC) today announced a plan to invest $2.25 billion over two years to address Coronavirus Disease 2019 (COVID-19)-related health disparities and advance health equity among populations that are at high-risk and underserved, including racial and ethnic minority groups and people living in rural areas.
To provide greater insight into who is receiving the vaccine and whether some groups are facing disparities in vaccination, KFF is collecting and analyzing state-reported data on COVID-19 vaccinations by race/ethnicity. As of March 15, 2021, 44 states were reporting vaccination data by race/ethnicity. This analysis examines how the vaccinations have been distributed by race/ethnicity and the share of the total population vaccinated by race/ethnicity.
During February 12–October 15, 2020, the coronavirus disease 2019 (COVID-19) pandemic resulted in approximately 7,900,000 aggregated reported cases and approximately 216,000 deaths in the United States.* Among COVID-19–associated deaths reported to national case surveillance during February 12–May 18, persons aged ≥65 years and members of racial and ethnic minority groups were disproportionately represented (1). This report describes demographic and geographic trends in COVID-19–associated deaths reported to the National Vital Statistics System† (NVSS) during May 1–August 31, 2020, by 50 states and the District of Columbia.
KFF’s Racial Equity and Health Data Dashboard gathers key data documenting inequities and the factors driving them.
The rollout of vaccines designed to end the coronavirus (COVID-19) crisis has begun in earnest across the United States. Currently, each state is responsible for determining how to allocate, distribute, track, and report its vaccine allotment from the federal government, although the federal government is expected to take on a larger role under a new Biden administration. Since the beginning of the pandemic, Black, Indigenous, and other people of color have been disproportionately impacted by both higher risks of infection and poorer health outcomes, and many are concerned that an inequitable or inefficient distribution of the COVID-19 vaccine may further widen health inequities among these populations. One way to help ensure the equitable administration of COVID-19 vaccine is to track vaccine administration disaggregated for key subpopulations, such as gender, race and ethnicity, and geography (e.g., urban vs. rural). This expert perspective reviews the data states are currently publically reporting related to vaccine administration and provides an interactive map that explores the extent to which all 50 states are reporting vaccine administration data breakdowns by age, gender, race, ethnicity, provider type, and level of geography. The expert perspective also discusses what current data sources states are using to provide this information and provides an overview of options states can consider to collect information about the administration of COVID-19 vaccine in populations via survey data.
North Carolina’s vaccine tracking dashboard, which includes statewide demographic data on people who have received either the first or second dose of the vaccine by race, ethnicity, gender, and age group.
Presentation that Oregon Health Authority made at the 2020 NAHDO conference about Oregon’s APAC/APCD and leveraging race and ethnicity data from other state data sources.
California’s Blueprint for a Safer Economy includes a health equity metric which will be used (along with other metrics) to determine a county’s tier. The purpose of this metric is to ensure California reopens its economy safely by reducing disease transmission in all communities. This document outlines the equity metric and requirements which is effective October 6, 2020.
The M-HEAT is a tool to help measure health insurance marketplace progress and performance toward health equity. It compiles and orders data from two perspectives: the health insurance marketplace andcommunity stakeholders.
As announced on August 28, 2020, the Blueprint for a Safer Economy includes a health equity metric which will be used (along with other metrics) to determine a county’s tier. The purpose of this metric is to ensure California reopens its economy safely by reducing disease transmission in all communities. This document outlines the equity metric and requirements which is effective October 6, 2020.
As states seek to address the social determinants of health and advance health equity, they face longstanding and persistent challenges in collecting complete, accurate, and consistent race, ethnicity and language (REL) data. This expert perspective provides an overview of current REL data collection standards; ideas for increasing completeness in data by engaging the enrollee and enrollment assisters, and modifying enrollment and renewal interface; and provides suggestions for how states could leverage alternative sources of data in order to improve REL data completeness.
CDC released a new study examining the disproportionate impacts of COVID-19 on American Indians and Alaska Natives (AI/AN) in 23 states between January 31 and July 3. The report found:
• The cumulative incidence of laboratory-confirmed COVID-19 cases among AI/AN was 3.5 times that of non-Hispanic whites
• Compared to whites, a higher percentage of cases among AI/AN individuals were in people under 18 years of age (12.9 percent AI/AN; 4.3 percent white)
• A smaller percentage of cases were among AI/AN individuals who are 65 years or older (12.6 percent AI/AN; 28.6 percent white)
The Committee on Ways and Means Majority at the US House of Representatives authored a report on the stark barriers that communities of color and rural communities face to accessing equitable health care.
Health system leaders and policy makers should take the lead in addressing alarming disparities in COVID-19 deaths.
This expert perspective provides an update on states’ reporting of health equity data and a summary of CARES Act reporting requirements.
Many people in America face segregation, social exclusion, encounters with prejudice, and unequal access and treatment by the health care system, all of which can impact health. Medicaid programs serve a disproportionate share of populations that are negatively impacted by health disparities. This new State Health and Value Strategies (SHVS) issue brief provides examples from a handful of states that have begun the work of identifying, evaluating, and reducing health disparities within their Medicaid managed care programs. Additionally, it offers an approach for other states interested in measuring disparities in health care quality in Medicaid managed care as a step towards achieving health equity, such that all Medicaid managed care enrollees have a fair and just opportunity to be as healthy as possible.
The Governor of New Jersey signed legislation, S2357, requiring hospitals to report demographic data to the Department of Health, including age, ethnicity, gender, and race of individuals who have tested positive for COVID-19, who have died from COVID-19, and who have tried to get testing but have been turned away.
This expert perspective looks in more depth at which states are regularly reporting data that helps shed light on the health equity issues of this crisis. Specifically, the post includes interactive maps that explore the extent to which all 50 states and the District of Columbia are reporting (as of May 28) data breakdowns by age, gender, race, ethnicity, and health care workers for both cases of and deaths from COVID-19.
On Thursday, May 7, State Health and Value Strategies hosted a webinar that reported on how states are tracking the disproportionate impact of COVID-19 on vulnerable populations and provided a framework for states to examine their COVID-19 response efforts to yield better outcomes for such populations. As the COVID-19 crisis evolves, it has become increasingly clear that vulnerable populations are disproportionately impacted. Unsurprisingly, these disparately affected groups are the same ones that have long experienced stark health disparities, such as communities of color, low income populations, and those that reside in congregate living facilities (nursing homes, jails, shelters, etc.). During the webinar, technical experts from Health Equity Solutions and SHADAC shared findings from recent SHVS publications.
The Social Interventions Research and Evaluation Network (SIREN) at the University of California San Francisco, is a research organization focused on the intersection of medical and social services. In response to the COVID-19 crisis, SIREN has developed a resource center of sites aggregating data about health equity, policy, and social risk related to the coronavirus and related financial crisis.
This expert perspective reviews the key indicators currently being tracked by states via their COVID-19 dashboards and also provides an overview of “best practices” states can consider when developing or modifying these same COVID-19 dashboards.
State Medicaid programs are increasingly seeking to understand and address social factors that contribute to poor health—such as food insecurity, unstable housing, and a lack of access to social supports—in order to lower costs, improve outcomes for their members, and advance health equity. To inform this work of addressing the social determinants of health (SDOH) and advancing health equity, states and Medicaid officials need data in order to identify priority areas of unmet social and economic needs, execute SDOH initiatives, and monitor and evaluate the impacts of these programs. Increasingly, states are leveraging a broad array of data sources to support efforts to address health equity. While those sources closest to the Medicaid program are the most widely used, each has advantages and disadvantages. This brief focuses on how Medicaid programs can use data from one federal survey, the American Community Survey (ACS), to inform and target interventions that seek to address social determinants of health and advance health equity. This brief also highlights relevant examples from states that use SDOH and health equity measures from the ACS, including which measures and what they are used for.
The fifth webinar in the SHVS Health Equity Through Managed Care Webinar Series profiled the work of one MCO, HealthPartners, in addressing equity issues within its Medicaid line of business. We heard from Brian Lloyd, who manages Health Partners’ organization-wide equity initiative, which includes collecting data to eliminate disparities in care, supporting language access, partnering with communities, and building an organizational understanding of equity, diversity, inclusion, and bias.
The second webinar in the SHVS Health Equity Through Managed Care Webinar Series explored how states can use data collection and measurement to support their efforts to advance health equity in Medicaid managed care.