ELIZABETH HANSEL—Imagine attempting to address decades of disparities and inequities with only one eye open to the problem. That is what the Biden administration is currently attempting to do as it creates healthy equity initiatives through the Centers for Medicare and Medicaid Services (“CMS”). These new initiatives focus on reducing the health disparities within these federally-funded programs. The reason the administration only has one eye open is that, overall, the CMS and the state Departments of Health that administer both Medicare and Medicaid plans have a large proportion of demographic data missing for their recipients. While improvements have been made with a new data reporting system called the Transformed Medicaid Statistical Information System (referred to as “T-MSIS” or “TAF”), which was released in 2016, many issues persist.
According to the Kaiser Family Foundation, in 2019 over 70% of states were considered to be of medium concern, high concern, or had unusable data about race and ethnicity. These levels of concern are established by looking at a state’s absence of the variable along with the alignment of the reported variable to the U.S. Census Bureau’s American Community Survey (“ACS”). The national average of missing data for race and ethnicity is 22%, with 63% of states having 10% or more data missing. Furthermore, the data that states do have is often not well aligned with the data from ACS. In fact, 55% of states have one more category of race and ethnicity data that is not aligned with the ACS estimates, which means the data differs by more than 10 percentage points. The primary reason that data reporting is still a struggle today is due to multiple factors. First, the national standards for the collection of race and ethnicity data are based on outdated Office of Management and Budget standards from 1997. While the Affordable Care Act did revise these standards to some degree, they continue to lag behind what we currently value as relevant and important distinctions in our data and research on health disparities. Additionally, all demographic data is optionally self-reported for Medicaid and Medicare beneficiaries because eligibility cannot be determined by any of these factors. This means that in enrollment forms and other forms regarding coverage, beneficiaries can leave this information blank.
Bad data is not the only issue when it comes to researchers and policymakers being able to use T-MSIS for creating health equity initiatives. There are elements to the T-MSIS program itself that make it difficult to properly measure data in the context of changing social standards and responses. For example, the proportion of individuals who answer “multiracial” or “other” to race and ethnicity questions continues to increase. The program often counts these responses as a portion of missingness rather than allowing them to be seen as complete answers along with the state’s other data. With these answers included in the data, states would not only achieve a more complete data record, but the data would also be more equitably reflective of the reality of our population and its demographics.
The crux of the issue in data reporting for the Medicaid and Medicare programs is that even this current system is most likely beyond what is statutorily required of the state programs. The federal regulation requiring states to submit their managed care quality strategy, 42 CFR 438.340, establishes that states with managed care plans must submit quality strategies to CMS each year for review of the quality of care provided through the plans and goals for continuing to advance the quality of care. Specifically relating to using data to address health disparities and health equity, 42 CFR 438.340(b)(6) establishes that in the quality strategy reports, states need “to identify, evaluate, and reduce, to the extent practicable, health disparities based on age, race, ethnicity, sex, primary language, and disability status.” This requirement, however, can be loosely interpreted by the states in terms of what it means to “identify, evaluate, and reduce, to the extent practicable.” The Biden administration is working on multiple initiatives across its agencies to address health disparities and the administration recognizes that much of this work does begin with better data. These initiatives work to improve federal aspects of the administration of Medicaid and Medicare and how the federal government can encourage local change. For example, CMS plans on engaging with community organizations and providers by acknowledging its ability to provide care that specifically works to reduce health disparities and reaches underserved communities.
In terms of what states can do to improve both their data reporting and health disparities within their Medicaid and Medicare programs, there is a wide variation in initiatives. One suggestion for states to improve their reporting data is for states to leverage other sources of data collection including managed care program encounter data, data from other community services organizations, and data from other state agencies to fill the gaps in the beneficiary self-reported enrollment data.
As states continue to grapple with how to include their findings on health disparities into their administrative plans for Medicaid and Medicare, the Biden administration continues to move forward with federally-coordinated efforts. This includes the creation of the Office of Environmental Justice in the Department of Health and Human Services. The role of this office is to make the connection between environmental conditions as a social determinate of health and impacting health disparities, particularly for beneficiaries of Medicaid and Medicare programs.Ultimately, state and federal agencies will have a difficult time addressing health disparities impacting Medicaid and Medicare beneficiaries unless they improve data reporting and organization standards. While self-reporting will remain the primary mode of collection for demographic data, there are multiple other sources of this data that agencies could utilize. Additionally, both federal and state agencies should prioritize establishing a better understanding of the data that they do have so that they may create meaningful programs, even if that means going beyond the current federal regulations.
