Rachel Harrington, a senior research scientist at NCQA, highlights inclusivity’s role in improving Healthcare Effectiveness Data and Information Set (HEDIS) measures to address LGBTQ+ healthcare disparities. Outdated language in HEDIS measures affects quality assessments, leading to care barriers. NCQA’s changes now encompass pregnancy and cancer screenings, aiming for sexual orientation and gender identity (SOGI) inclusivity. Harrington emphasizes community collaboration and normalizing SOGI discussions for equitable care.
Rachel Harrington, Ph.D., a senior research scientist at the National Committee for Quality Assurance (NCQA), emphasizes the significance of inclusivity in the Healthcare Effectiveness Data and Information Set (HEDIS) measures to advance health equity by addressing health disparities in a sector marked by inequalities.
HEDIS measures are widely adopted, encompassing 90 percent of health plans, and serve as tools for assessing the quality of care across various domains for healthcare providers and payers.
However, these measures have been hindered by outdated terminology that conflates sex and gender, leading to obstacles in healthcare for LGBTQ+ individuals. This marginalized community already faces significant disparities in healthcare access and outcomes.
According to a UCLA survey, 33 percent of transgender adults reported delaying or forgoing essential medical care, in contrast to 14 percent of cisgender adults.
NCQA, the governing body responsible for HEDIS development, has embarked on enhancing these quality metrics to be more inclusive of sexual orientation and gender identity (SOGI).
Rachel Harrington explains, “HEDIS is part of a larger healthcare system that has blind spots and areas for improvement. Sexual orientation and gender identity appeared as domains where substantial progress could be made based on evolving societal understanding and supporting data.”
The initial revision made by NCQA pertained to pregnancy-related language. Previously, the measures referred to “women with deliveries,” unintentionally excluding gender-diverse individuals. The revised language now reads “members with pregnancy,” encompassing all pregnant individuals.
Further modifications were made to enhance gender inclusivity in breast and cervical cancer screenings. The previous gender-specific criteria excluded trans men and non-binary individuals with cervixes. Disturbingly, only 56 percent of trans men with cervixes receive regular cervical cancer screenings.
For HEDIS Measurement Year 2024, NCQA intends to use the “Sex (Assigned at Birth)” data element from the United States Core Data for Interoperability (USCDI) to determine eligibility for cervical and breast cancer screenings. This shift seeks to ensure that gender-diverse individuals requiring preventive screenings are not overlooked.
Harrington asserts, “One’s gender identity shouldn’t affect their access to preventive care. If an individual has a cervix, they should be screened for cervical cancer.”
Engaging LGBTQ+ clinical communities and advocacy organizations, NCQA sought feedback on the alignment of quality measurement with care access. The involvement of these communities informed NCQA’s approach to the changes.
Although the proposed measures received mostly positive feedback during the public comment phase, technical recommendations influenced the final measures. The balance between specific recommendations and available standardized data was a challenge.
Harrington notes that although there were intentions to include a category for intersex members, technical constraints led to its removal. Additionally, recommendations for gender-affirming estrogen therapy inclusion in breast cancer screening measures were constrained by data availability and existing evidence.
Harrington emphasizes that the journey toward health equity involves more than just adjusting existing measures. NCQA envisions creating new measures informed by the community’s needs.
Normalizing discussions about sexual orientation and gender identity during patient interactions is also crucial. Contrary to assumptions, research shows that patients are generally willing to share such information, debunking provider discomfort.
Finally, Harrington underscores the significance of expanding comfort zones in discussing sex and gender, ensuring that these conversations do not impede high-quality care.
