Blog & News
LGBT Health Equity: Sexual Orientation and Gender Identity Data Resources and Information from SHADAC
June 24, 2024:- Less likely to have health insurance coverage
- Less likely to have a regular health care provider
- More likely to delay care
- More likely to report poor quality care and unfair treatment from providers
Sexual Orientation and Gender Identity Data: New and Updated Information on Federal Guidance and Medicaid Data Collection Practices (SHVS Brief)
State Health Compare: Explore Health Data with SOGI Data Breakdowns
- Adults Who Forgo Needed Medical Care Due to Cost
- Adult Smoking
- Adult Excessive Alcohol Consumption
- Adult E-Cigarette Use
- Chronic Disease Prevalence
- Adult Unhealthy Days
- Activities Limited Due to Health Difficulty
- Adults with No Personal Doctor
- Adult Cancer Screenings
- Adult Flu Vaccinations
Gender Based Discrimination in Health Care by Gender Identity in Minnesota
- Over half (57.1%) of trans and non-binary people reported forgone care—more than double the overall average of 26.2%
- Nearly one-third of trans and non-binary adults had low confidence in getting necessary health care—compared to the overall average of 11.8%
Examining Discrimination and Health Care Access by Sexual Orientation in Minnesota
- Both lesbian/gay and bisexual/pansexual people were more likely to report barriers to health care access
- Bisexual/pansexual people were more likely to report having low confidence in the ability to get needed health care
- Both lesbian/gay or bisexual/pansexual people had significantly higher rates of forgone care
SHADAC Response to 2023 Request for Comments on American Community Survey SOGI Questions
Stay Up to Date on the Latest in SOGI and LGBT Health Data
Blog & News
Changes to Child and Adult Core Sets to Advance Equity (SHVS Cross-Post)
June 10, 2024:The following Expert Perspective (EP) is cross-posted from State Health & Value Strategies. Authors: Elizabeth Lukanen and Lacey Hartman, SHADAC
Original posting date June 7, 2024. Find the original post here on the SHVS website.
The Child and Adult Core Sets were established to measure the quality of care for Medicaid and Children’s Health Insurance Program (CHIP) enrollees, nationally and at the state level, based on a uniform set of measures. The goal of the Core Sets is to monitor performance and improve the quality of healthcare. Starting in fiscal year (FY) 2025, states will be required to report a subset of Child and Adult Core Set measures (see Table 1) by race and ethnicity, sex, and geography.
By requiring data disaggregation for key populations of interest, policymakers, advocates and researchers will have a new tool to measure, monitor and inform policies and practices that focus on health equity.
Table 1: Core Set Measures Subject to Stratification (10 Measures in Total)
Child Core Set Measures (7 of 27 measures) |
|||
Measure Name |
National Quality Forum (NQF) # |
Measure Steward |
Data Collection Method |
Well-Child Visits in the First 30 Months of Life (W30-CH) |
1392 |
National Committee for Quality Assurance (NCQA) |
Administrative |
Child and Adolescent Well-Care Visits (WCV–CH) |
1516 |
NCQA |
Administrative |
Oral Evaluation, Dental Services (OEV-CH) |
2517 |
Dental Quality Alliance (DQA) (American Dental Association) |
Administrative |
Follow-Up After Hospitalization for Mental Illness: Ages 6 to 17 (FUH-CH) |
576 |
NCQA |
Administrative |
Prenatal and Postpartum Care Up to Age 20 (PPC2-CH) |
1517* |
NCQA |
Administrative or hybrid |
Live Births Weighing Less Than 2,500 Grams (LBW–CH) – CMS calculates on behalf of states |
1382 |
Centers for Disease Control and Prevention (CDC)/National Center for Health Statistics (NCHS) |
State vital records |
Low-Risk Cesarean Delivery (LRCD-CH) – |
Not applicable |
CDC/NCHS |
State vital records |
Adult Core Set Behavioral Health Measures (3 of 11 measures) |
|||
Measure Name |
NQF # |
Measure Steward |
Data Collection Method |
Initiation and Engagement of Substance Use Disorder Treatment (IET-AD) |
0004 |
NCQA |
Administrative or electronic health record |
Follow-Up After Emergency Department Visit for Substance Use: Age 18 and Older (FUA-AD) |
3488 |
NCQA |
Administrative |
Follow-Up After Hospitalization for Mental Illness: Ages 18 and older (FUH-AD) |
0576 |
NCQA |
Administrative |
*No longer endorsed by NQF.
States will be required to stratify these mandatory measures using the following categories:
- Race and ethnicity: Using the newly released 2024 Revisions to the Office of Management and Budget’s Statistical Policy Directive No. 15: Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity. Minimum categories include:
- American Indian or Alaska Native
- Asian
- Black or African American
- Hispanic or Latino
- Middle Eastern or North African
- Native Hawaiian or Pacific Islander
- White
- Sex: Defined as biologic sex, using the 2011 HHS Implementation Guidance on Data Collection Standards for Race, Ethnicity, Sex, Primary Language, and Disability Status. Categories include:
- Male
- Female
- Geography: Using the core-based statistical area (CBSA), which are county-based statistical areas defined by large population areas, as a minimum standard. Those categories include:
- Metropolitan statistical area (population core of 50,000 or more)
- Micropolitan statistical area (population core of 10,000 to 49,999)
- Outside Core Based statistical area
Background and Context
Every year, the Secretary of the U.S. Department of Health and Human Services is required to review and update the Child and Adult Core Sets. This review is designed to detect measurement gaps and to identify and recommend revisions to improve and strengthen the Core Sets. This review is led by a workgroup that includes input from a variety of stakeholders including states, managed care plans, healthcare providers, and quality experts. In response to the annual review process, state reporting of these measures has evolved and starting in FY 2024, reporting of the Child Core Set and the Core Set of behavioral health measures for adults enrolled in Medicaid became mandatory.
Over time, the Core Sets have been specifically recognized as a critical tool to monitor health disparities. Increasing stratification of the measures is a priority area for the Centers for Medicare & Medicaid Services (CMS) and in guidance released in 2022, CMS explicitly encouraged states to “use Core Set data to identify disparities in care and to develop targeted quality improvement efforts to advance health equity.”
During the review of the 2025 Core Set Measures, the Core Set review workgroup discussed using stratified Core Sets data to advance health equity. Workgroup members who represent state and enrollee perspectives both highlighted the importance of disaggregation for assessing member experience and monitoring equity while also acknowledging the challenges inherent to data collection and reporting. In response to this discussion, the following challenges and considerations were highlighted in the final FY 2025 recommendations report:
- Data on enrollee demographics is of variable quality, with missing and unknown data (enrollees who don’t provide data and related hesitancy).
- Administrative burden to collect this information.
- Political considerations for how the data are collected and reported (balancing state legislative agendas compared to CMS requirements).
- Technical challenges, such as having multiple conflicting sources of data.
- Misalignment of reporting stratification categories with other federal and state program requirements.
- Need to engage enrollees in the collection and use of these data.
- Need for technical assistance to states to meet the new reporting requirements.
Despite these challenges, there was consensus among the workgroup about the importance of stratification, which aligned with the new requirement that 10 measures be reported by race and ethnicity, sex, and geography. Specifically, for FY 2025 reporting, states will be required to report stratified data for the seven Child Core Set measures listed above in Table 1 (25% of the 27 measures) and three of the Adult Core Set behavioral health measures (25% of 11 behavioral health measures).
Required stratification of additional measures will increase over time and the intent is that all eligible mandatory Core Set measures will be disaggregated by FY 2028. States have the option of reporting stratified data for all measures starting in FY 2025.
People’s experience of health inequities based on race and ethnicity, sexual orientation, gender identity, geography, immigration status, and other factors, is a longstanding and pervasive problem that is deeply rooted in discrimination and structural racism. The Medicaid program, through its policy, financial, and programmatic levers, is uniquely situated to address the health inequities experienced by the program’s diverse population of enrollees. Key to these efforts is the availability of comparable state programmatic and performance data to identify and track progress.
For this reason, the move toward disaggregated Core Sets data by race and ethnicity, sex, and geography is an important step to improve the monitoring of health care access and quality for Medicaid enrollees, to further identify where disparities exist and to develop and evaluate quality improvement efforts. However, this is a small step that needs to expand to identify other groups that have been economically and socially marginalized such as those with a disability, individuals who identify as lesbian, gay, bisexual, transgender, queer, intersex, or outside the gender binary (LGBTQI+), and those with limited English proficiency.
In addition to expanding data disaggregation to include a broader range of groups, it will also be important to provide states with the necessary resources and technical assistance to analyze and report these data in an accurate and comparable way. As was also noted in comments to the workgroup, enrollee engagement in the collection and use of these data is also key for advancing health equity. Community engagement is a way to establish and build trust and to develop interventions informed by the lived experience of Medicaid enrollees.
Finally, it will be critical to provide states, providers, and community partners with the resources and tools necessary to ensure that timely action is taken to actually address, and not just report on, systemic inequities.
Want to stay informed on the latest data collection practices, survey updates, and more? Sign up for our monthly newsletter here, and find health equity resources here on the SHVS site.
Publication
Sexual Orientation and Gender Identity Data: New and Updated Information on Federal Guidance and Medicaid Data Collection Practices (SHVS Brief)
![Updated sexual orientation and gender identity sogi data collection brief SHVS](https://www.shadac.org/sites/default/files/publications/images/SHVS%20Updated%20Sogi%20Brief%20Cover%20Page-1.png)
In the United States, over 13 million people identify as lesbian, gay, bisexual, or transgender (LGBT).1 Further, approximately 1.2 million LGBT adults (ages 18 - 64) are covered by Medicaid, and, of those, it is estimated that 152,000 (12.7%) identify as transgender.2
- a summary of the current landscape of SOGI data collection in Medicaid through an examination of all 50 states’ and Washington, D.C.’s paper Medicaid applications along with 44 states’ online Medicaid applications
- a spotlight on Oregon’s efforts to develop SOGI data standards
- a discussion of considerations for states wanting to implement these new SOGI questions into their Medicaid application(s)
Read the brief in full here.
About the SHVS:
[1] The Williams Institute at UCLA School of Law. (2019, December 16). LGBT FAQs - Williams Institute. Williams Institute. https://williamsinstitute.law.ucla.edu/quick-facts/lgbt-faqs/
[2] Medicaid and CHIP Payment Access Commission (MACPAC). (June 2022). Access in Brief: Experiences of Lesbian, Gay, Bisexual, and Transgender Medicaid Beneficiaries with Accessing Medical and Behavioral Health Care. https://www.macpac.gov/wp-content/uploads/2022/06/Access-in-Brief-Experiences-in-Lesbian-Gay-Bisexual-and-Transgender-Medicaid-Beneficiaries-with-Accessing-Medical-and-Behavioral-Health-Care.pdf
[3] Bosworth, A., Turrini, G., Pyda, S., Strickland, K., Chappel, A., De Lew, N., Sommers, B.D.. (June 2021). Health Insurance Coverage and Access to Care for LGBTQ+ Individuals: Current Trends and Key Challenges. https://aspe.hhs.gov/sites/default/files/2021-07/lgbt-health-ib.pdf
[4] U.S. Government. Executive Office of the President. “Advancing Equality for Lesbian, Gay, Bisexual, Transgender, Queer, and Intersex Individuals”. 87 Fed Reg 37,189-37,195. (June 22, 2022). https://www.govinfo.gov/app/details/FR-2022-06-21/2022-13391
[5] Centers for Medicare & Medicaid Services (2023). New Sexual Orientation and Gender Identity (SOGI) Questions on the Marketplace Application. https://www.cms.gov/files/document/sogi-questions-marketplace-application.pdf
[6] Center for Medicaid and CHIP Services (November 9, 2023). Guidance on Adding Sexual Orientation and Gender Identity Questions to State Medicaid and CHIP Applications for Health Coverage. https://www.medicaid.gov/sites/default/files/2023-11/cib11092023.pdf