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How removing gendered language from HEDIS measures is making care more accessible for Trans and Gender Non-Conforming patients.
NCQA's updates to HEDIS measures for MY2024 aim to address health disparities by including expanded race and ethnicity data and gender-inclusive language. These changes are part of ongoing efforts to promote inclusivity and analyze outcomes to achieve health equity. Improving the quality of data collection practices is crucial for identifying and targeting disparities effectively. By breaking down data by factors like race, ethnicity, gender, socioeconomic status, and more, health care providers and health plans can identify areas where certain groups may be experiencing disproportionately poor outcomes or barriers to care. This allows for targeted interventions and policies to address specific needs and reduce disparities, ultimately working towards achieving health equity for all individuals, inclusive of background or identity.
Quality measures often focus on specific groups based on guidelines, but how these groups are defined can affect fairness and inclusivity. Sometimes, the language used in these measures unintentionally excludes certain people, like Transgender and Non-conforming (TGNC) individuals. Historically, measures collected data on only sex and not gender and used two, binary options (male or female), which can lead to the mis-use of guidelines, misgendering of patients, and disparities in care.
Upon reviewing HEDIS quality measures, NCQA found that preventive screening guidelines did not incorporate recommendations for transgender individuals and may even led to providers missing screening patients for conditions or diseases. As a result of this gap, 2024 measures for breast and cervical cancer screenings encourage separate consideration of sex and gender in order to better include transgender individuals.
Current practices and their impact on TGNC patients.
Structural barriers to care, such as lack of access to transgender-friendly health care providers and discriminatory policies, contribute to lower rates of preventive screenings among TGNC patients when compared to cisgender patients. Moreover, disparities are intensified by the frequent poor data collection, misgendering, and lack of understanding of medical history and needs of TGNC patients, which leads to their exclusion from quality measurement and improvement initiatives. This exclusion stems from using sex and gender interchangeably and inconsistently and a lack of culturally competent care, resulting in inadequate contextual information to accurately identify the clinical needs of transgender and gender-diverse patients. Moreover, through exclusionary practices, TGNC individuals may have their health care denied for coverage by health plans due to using outdated, binary, and sex-based guidelines.
As a result, these individuals often face systemic challenges in accessing appropriate care tailored to their specific health requirements, further exacerbating health inequities. Addressing these structural barriers and improving data collection methods are essential steps towards ensuring equitable health care for transgender and gender-diverse communities.
- Intake questionnaires typically ask for a single sex/gender answer instead of asking about gender identity and sex recorded at birth. Patients may feel uncertain or uneasy about how to respond, and this approach may also result in health care providers and plans making incorrect assumptions about a patient's needs or identity.
- The absence of gender identity information in health care data collection may result in underrepresentation of TGNC individuals in research and quality improvement efforts, further perpetuating disparities by limiting the development of targeted interventions and policies.
- Research indicates that despite a significant risk of breast cancer among TGNC communities, they are less likely to receive recommended cancer screenings. Risk among these communities varies and is largely dependent on the presence of breast tissue and length of exposure to estrogen-based hormone treatment.
- The 2016 National Transgender Survey found that most transmasculine individuals retain their cervix, and guidelines for TGNC cancer screening recommend that TGNC patients with cervixes follow the cancer screening guidelines for cisgender women. However, many providers are not aware of or do not use these guidelines. Lack of awareness and utilization leads to inconsistent screening for TGNC patients.
NCQA’s shift toward gender-affirming approaches to measurement.
NCQA identified eight HEDIS measures that could benefit from reevaluation focused on disaggregating sex and gender:
- Osteoporosis Management in Women who had a Fracture
- Osteoporosis Screening in Older Women
- Breast Cancer Screening
- Cervical Cancer Screening
- Non-recommended Cervical Cancer Screening in Adult Females
- Non-recommended PSA Based Screening in Older Men
- Statin Therapy for Patients with Cardiovascular disease
- Chlamydia Screening in Women
In 2022, experts from the Gender Harmony Project and The National Academies of Sciences, Engineering and Medicines (NASEM) collaborated to improve standards for gathering gender and sex reported at birth information in health care. They found Gender Harmony Project data elements for “gender identity” and “clinical sex” to be most effective, as well as NASEM's suggestions on “sex assigned at birth” and “Intersex status”. Input from leading LGBTQIA+ organizations also prompted changes like using organ-based inclusion criteria and updating measures that use gender collection as data. The NCQA plans to update measures in 2024, incorporating detailed clinical data elements like “gender,” “sex assigned at birth,” and “clinical sex” parameters.
This approach retains the Administrative Gender-based definition to support continued feasibility of measure reporting; however, specification logic prioritizes the use of more nuanced data (e.g., Sex Assigned at Birth or Sex Parameters for Clinical Use) when present. For example, an individual with Administrative Sex of male but Sex Assigned at Birth of female would be included in the Cervical Cancer Screening measure denominator unless another exclusion (e.g., removal of cervix) was documented.
Violet’s culturally-specific interventions.
Violet's Clinical Quality Educational Interventions (CQEI) are tailored learning programs designed to equip providers with knowledge of health disparities and the skills to screen for and treat those disparities for specific communities, along with comprehensive information regarding social determinants of health. Each CQEI collection focuses on specific disparities and the communities that are most impacted by them:
- Cancer Screenings: Cervical and Breast Cancer in LGBQ communities. Cancer screening is vital for detecting and treating cancer at an early stage. LGBTQIA+ patients have unique risk profiles and challenges utilizing cervical and breast/chest cancer screening services. This course provides an overview of cervical and breast/chest cancer screening guidelines and best practices for LGBTQIA+ patients, as well as a clear overview of the specific barriers that TGNC patients face.
- Cancer Screenings: Colorectal Cancer in LGBQ communities. LGBTQIA+ patients have unique risk profiles and challenges utilizing colorectal screening services. This course provides an overview of colorectal and cancer screening guidelines and best practices for LGBTQIA+ patients, challenges, and approaches providers can use to provide quality care. Additionally, there is a clear overview of the specific barriers that TGNC patients face.
Traditional binary concepts of gender fail to capture the complexity of biological variations, gender identities and medical histories that may impact health outcomes for TGNC patients. Using standardized data collection practices that recognize and record diverse aspects of gender and sex reported at birth, allows for more comprehensive and individualized care.
To ensure that TGNC patients receive appropriate and effective health care, it is imperative to enhance the cultural competence of health care providers, as well as implementing specific, standardized data collection methods regarding sex reported at birth, distinct from gender. By fostering a clinical environment that values and respects TGNC communities and acknowledges the unique barriers they face to accessing care, providers can make patients feel understood and empowered to access crucial preventive care.
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