The Path Forward: Improving Data to Advance Health Equity Solutions

A True Focus on Data to Advance Health Equity

The Centers for Medicare & Medicaid Services Office of Minority Health has released “The Path Forward: Improving Data to Advance Health Equity Solutions”, which for the first time, 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 and, in turn, advance health equity.

As we look back over the last few years and reorient our perspective to the future of health care in the wake of the COVID-19 pandemic, one lesson is clear. Many individuals, families, and communities will continue to experience health disparities as their true needs and barriers to achieving optimal health are left hidden by inadequate sociodemographic and social determinants of health (SDOH) data vital to drive solutions. As the largest payer for health care in the United States, CMS recognizes it must set the bar for meaningful health equity data collection and use across the health care system and is, for the first time making meaningful plans for transparency, accountability, and improvements to allow for data to better inform and shape policies across CMS programs. CMS defines health equity data as the combination of quantitative and qualitative elements that enable the examination of health differences between populations and their causes. CMS relies on data to plan and execute policies that affect more than 150 million Americans covered by the CMS programs.[i] Through these programs, CMS strives to identify and remedy systemic barriers to equity so that every person we serve 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, religion, or other factors that affect access to care and health outcomes.

In listening to our communities and the partners working with us to achieve health equity at the Centers for Medicare & Medicaid Services (CMS) Office of Minority Health (OMH), the need for appropriate data remains a key priority we hear from many of our stakeholders. Our partners continuously emphasize the importance of data collection, stratification, standardization, analysis, and making data accessible to organizations who need it, as well as, improving and expanding data collection. It is the first priority of CMS’s recently released CMS Framework for Health Equity. That is why we are reasserting our commitment to excellence in our pursuit of health equity data collection and the first priority of the framework, through The Path Forward: Improving Data to Advance Health Equity Solutions.

Data can tell a story, but if the data is incomplete or unaligned, the story is also incomplete. To work to advance health equity, we must improve our data, especially our health equity data.

For over a decade, CMS OMH has promoted equitable programs, policies, and impacts across CMS, helping CMS place health equity at the center of our work. The CMS Framework for Health Equity outlines the approach CMS uses to promote health equity and mitigate health disparities. The CMS Framework for Health Equity prioritizes CMS’s commitment to expanding the collection, reporting, and analysis of standardized data.[ii] CMS knows that increasing the collection of standardized sociodemographic and SDOH data across the health care industry is an important first step towards improving population health.

CMS intends to move forward with our future vision for health equity data by collecting new health equity elements, aligning standards, implementing health equity scores, and providing industry with the tools to and access to data need to further drive health equity goals and actions.

New standards, such as the United States Core Data for Interoperability (USCDI) adopted by the Office of the National Coordinator for Health IT on behalf of Department of Health and Human Services (HHS) in 2020, can support structured data capture and exchange of health equity data electronically – including SDOH data – at a granular level. This presents opportunities for focused alignment and harmonization in CMS contexts. CMS is also working with ONC to ensure the USCDI is used when applicable and appropriate. This presents opportunities for alignment and harmonization with CMS’s data to the USCDI when applicable and appropriate to support data completeness for our programs and the advancement of interoperability across the US Department of Health and Human Services (HHS).

CMS additionally uses a number of datasets to help clarify current disparities and track progress toward achieving health equity. In the newly-released The Path Forward: Improving Data to Advance Health Equity Solutions, CMS defines health equity data and outlines current opportunities and challenges, including the limited authority to collect data and other data limitations. The Path Forward: Improving Data to Advance Health Equity Solutions outlines available health equity data elements by program type as well as advancements that have been made. 

CMS recognizes that progress has been made but is committed to resolving the major gaps in data quality, accuracy, and completeness and has engaged in a CMS-wide review to propose solutions. CMS’s achievements have begun to improve these gaps to enhance health equity data, including:

• Assessing the current state of sociodemographic and SDOH data collection and targeting collection of new data elements important to understanding disparities across groups who are historically underserved, as well as other tools and resources for community partners, providers, and states working on health equity data as well.
• Collecting race and ethnicity data from Medicare Advantage enrollment forms (for optional response starting in January 2023 to last at least one year).

• Enhanced the collection of data elements across all programs, including collecting SDOH data or Health-Related Social Needs (HRSNs) data, through the Innovation Center’s Accountable Health Communities Model and collection of new health equity-related data elements in post-acute care settings (e.g., care preferences, veteran status, education).
• Added 7 Standardized Patient Assessment Data Elements (SPADEs) to required patient assessment tools for post-acute care settings to allow collection of race, ethnicity, preferred language, need for interpreter, health literacy, transportation and social isolation, and, for the first time, social isolation, giving CMS and our stakeholders the ability to tailor programs and policies in post-acute care settings based on needs and disparities.
• Outlined opportunities for state health officials to address SDOH under their programs and support officials in designing policies and interventions that can address disparities.[iii]
• Launched the Health Equity Advisory Team through the Innovation Center’s Health Care Payment Learning & Action Network (HCPLAN) to help identify and prioritize. opportunities to advance health equity through alternative payment models nationwide
• Giving CMS and our stakeholders the ability to tailor programs and policies in post-acute care settings based on needs and disparities as appropriate.
• Provide regular access to disaggregated data and insights through:
  • Data snapshots
  • Data highlights
  • Stratified reporting on disaggregated data including sex, race, ethnicity, Medicare Advantage, dual eligibility/low-income subsidy, and rural-urban disparities.
• Develop ongoing tools and resources for community partners, such as:
  • Mapping Medicare Disparities Tool, an interactive tool with county-level data and regular updates with more data.
  • CMS Health Equity Technical Assistance Program
  • CMS Disparity Impact Statement
  • Z Codes Journey Map Infographic

Despite this progress, gaps exist in the availability, completeness, and quality of health equity data across CMS programs, including:

• Incomplete data on key health equity elements prevents fully data-driven decisions
• Data is often collected in inconsistent forms not aligned to standards
• Lack of consistent data collection at a disaggregated level, which can provide more meaningful insights
• Bias in methods challenges CMS’s ability to interpret data

However, we note that these gaps also result in part from the collection of data in a manner that is not aligned to established standards, such as those already adopted for use by the US HHS. HHS standards includes not only the HHS 2011 Health Equity Data Guidelines but additionally the USCDI that incorporates the Centers for Disease Control and Prevention (CDC) standards for race and ethnicity as well as other health equity data standards and SDOH standards. We  intend to leverage and align with the USCDI as applicable and appropriate to support data completeness for our programs. The USCDI consists of data elements to support representation of health equity data as structured data that align with the domains of the 2011 HHS data standards and can be used to implement the 2011 HHS guidelines in a computable format.  

CMS is committed to resolving major gaps in data quality, accuracy, and completeness. CMS must lead the way in health equity and supporting and improving health equity data collection, reporting, and analysis to complete this work.

Efforts to address these data issues, including expanded use of adopted HHS standards, are already underway and will also be prioritized as CMS pursues our future vision for health equity data.  CMS will prioritize the following actions as we move forward with our future vision for health equity data:

• collecting new health equity elements across CMS programs to fill existing gaps;
• aligning health equity data to acceptable standards across all elements;
• gradually implementing health equity scores;
• leveraging and aligning with the USCDI as applicable and appropriate;
• equipping the industry with new tools and capabilities aligned to health equity goals; and
• providing access to disaggregated data insights that the public can use to drive action.

CMS is committed to working with partners, organizations across the industry, the people we serve, and other stakeholders to shape the future of health equity data and ensure equal opportunity to health for all individuals and communities that participate in CMS programs. CMS will remain committed to health equity data collection efforts, and CMS anticipates that these efforts will help those who are collecting and using data in their own work. Together, we will work toward a future where CMS, government agencies, industry organizations, individuals, and other stakeholders have access to health equity data, can identify current disparities, and track progress toward achieving health equity for  all individuals and communities that participate in CMS programs.

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