A Health Equity Data and Accountability Infrastructure for Massachusetts
Matt Reynolds, Deepti Kanneganti, and Michael Bailit, Bailit Health; Clara Filice and Jatin Dave, MassHealth
Systematically reducing health inequities is dependent upon identifying inequities. One approach for measuring inequities is to stratify healthcare data by demographics and social risk factors. This stratification depends upon complete and accurate data of characteristics that are likely to be associated with inequities, such as race, ethnicity, language, disability status, sexual orientation, gender identity and sex.
At present, there is limited, incomplete, and inconsistent collection of person-level demographic data in the United States by healthcare providers and payers. This variability limits visibility into inequities, hampers evaluation of improvement, and burdens both providers and patients.
Current collection practices for gender identity provide an example of the problem of inconsistent data standards. The Federal Health Resources and Services Administration (HRSA) Uniform Data System standard for collecting gender identity data, along with the standard newly released in an informational bulletin by the Centers for Medicare & Medicaid Services, limits a respondent’s primary options to male, female, transgender male, or transgender female. However, other standards might incorporate additional response options such as non-binary, genderqueer, agender, two-spirit, or questioning. Mapping response options across standards is often not possible and may pose concerns about patient autonomy in self-identification if individuals are grouped according to an identity that they did not choose for themselves.
Without an aligned approach to complete collection of demographic data, efforts to address health inequities by payers and providers will remain challenging.
A Resolve to Act
In late 2021, the Massachusetts Executive Office of Health and Human Services (EOHHS), which houses the Massachusetts Medicaid program (MassHealth), convened a technical advisory group of local experts to develop a voluntary, aligned approach for collecting self-reported demographic data. In doing so, Massachusetts became the first state to develop statewide, cross-market, demographic data standards for use by all payers and providers. Through a second technical advisory group, EOHHS also prioritized the creation of a framework for introducing accountability in value-based contracts, particularly total cost of care contracts, for four categories of health equity measures, including measures that assess implementation of the data standards.
Balancing Priorities Around Health Equity Data Standardization
The EOHHS data standards advisory group found that its priorities often conflicted when evaluating existing demographic data standards with an equity lens. For example, the group valued the greater autonomy that a data standard with more response options would provide to patients, but the additional response options could also make the standard incompatible with federal reporting requirements and/or add administrative burden for payers and providers, issues that the group ideally wished to avoid. Below are a few examples of how the advisory group navigated these challenges.
First, the data standards advisory group ensured the recommended data standards were compatible with federal reporting and interoperability frameworks (such as the HRSA’s standard for Federally Qualified Health Centers and the United States Core Data for Interoperability) to maximize stakeholder use. However, the group noted that many federal standards did not optimize patient-centeredness. This challenge was evident when the advisory group considered multiple potential standards for gender identity. An existing federal standard from the Centers for Disease Control and Prevention (CDC) clearly met aims related to interoperability but was perceived to be less representative of the full spectrum of individual identities. An alternative Oregon state-derived standard for gender identity was more comprehensive but would require payers and providers to translate patient-selected identities to meet federal reporting requirements and to enable aligned data storage and exchange. The group ultimately recommended the CDC gender identity standard, with an expectation that the standard would need to be updated over time to better reflect individual patient identities.
The data standards advisory group also grappled with how to prioritize patient-centered response options and minimize patient and provider collection burden, particularly as burden may limit stakeholder uptake of the data standards. This was a particular challenge when considering data standards related to disability status. The group initially favored an Oregon state-derived standard, which includes six questions developed by the U.S. Department of Health and Human Services (HHS) and three additional questions related to an individual’s intellectual and developmental disability status. However, the group ultimately recommended that organizations prioritize collection of only the six HHS questions to reduce data collection burden and improve timeliness of implementation.
More broadly, when considering response options for demographic data standards, the advisory group decided to balance burden and patient-centeredness by prescribing an acceptable minimum set of response options across the data standards while permitting organizations to include additional response options where necessary based on the populations that they serve.
Finally, during the data standards development process, the data standards advisory group identified several important implementation questions related to data storage, data sharing, and patient education regarding information requests. While the advisory group felt that recommending specific actions in response to these questions may have extended beyond the group’s scope, the advisory group did believe it to be critical to raise which issues organizations should pay attention to in an “implementation considerations” section of the final, published data standards document. Where the group did provide some guidance, it did so while leaving room for flexibility and payer and provider organizational self-determination.
Developing an Approach to Introducing Accountability for Health Equity
Similar to the data standards-focused EOHHS advisory group, the accountability-focused advisory group had to balance competing priorities. Specifically, the group weighed the need to advance health equity against the extent to which payers and providers should reasonably be held responsible for doing so.
For example, the accountability advisory group contemplated how to advance health equity when there are limited community resources to provide social supports for patients in need. The group recommended prioritizing measures focused on social needs with a greater availability of resources first, such as food insecurity. The framework that the accountability group developed also emphasizes the importance of establishing and evaluating partnerships with community-based organizations to help build a foundation to identify and tackle resource shortages over time.
The accountability advisory group also discussed how to hold providers accountable for health equity while recognizing that some providers serve populations with disproportionate social risk and experience disparities in payment levels. The group suggested several potential solutions, including: ensuring incentives address provider-specific opportunities to advance equity; focusing on measuring improvement rather than comparison to an absolute benchmark; and stratifying provider performance data to understand how quality measure performance may differ based on provider payment levels and populations served. The group also recommended examining strategies involving health equity investments. This could look like time-limited upfront payments to support capacity building and practice transformation, or a separate health equity investment pool of funds could be made available only to providers who disproportionately serve low-income populations in under-resourced communities.
Implementation of the Massachusetts Health Equity Data Standards and Accountability Framework
Both advisory groups met throughout the first half of 2022, developing recommendations through a consensus decision-making model. Following a public comment process and receipt of input from the Commonwealth’s Quality Measure Alignment Taskforce, the Secretary of Health and Human Services approved the final health equity data standards and accountability framework effective January 1, 2023. The documents, which include the lists of members who participated on each technical advisory group, can be accessed via the Taskforce website. The Taskforce recommended implementation of the race, ethnicity and language data standards by January 1, 2024, and implementation of the disability, sexual orientation, gender identity, and sex data standards by January 1, 2025. The Commonwealth has initiated efforts to disseminate this information to relevant stakeholders across the state through various means, including a press release, targeted email communications, and a series of educational meetings.
Looking Ahead
While this achievement of cross-market demographic data standards is a great first step for the state of Massachusetts, it is certainly not the end of the road. The Taskforce will need to revisit its data standards and accountability framework periodically as existing standards change, new standards are developed, and as experience with health equity measurement advances. Ideally there will come a point when Massachusetts will be able to join with other states in following a set of widely used national data standards. For now, Massachusetts is acting because there are many health inequities and action to address inequities cannot wait.