In an industry plagued by health disparities, ensuring that Healthcare Effectiveness Data and Information Set (HEDIS) measures are inclusive is key to moving the needle on health equity, according to Rachel Harrington, PhD, a senior research scientist at the National Committee for Quality Assurance (NCQA).
HEDIS measures are used across 90 percent of health plans and aim to help healthcare providers and payers understand their performance in various quality areas.
However, the measures have used outdated language that conflates sex and gender, posing care barriers for LGBTQ+ folks, a community that already faces significant health disparities in care access and outcomes.
According to a UCLA survey, 33 percent of transgender adults reported delaying or not getting needed medical care compared to 14 percent of cisgender adults.
NQQA, the body governing HEDIS measure development, recently set out to improve quality measures to drive sexual orientation and gender identity (SOGI) inclusivity.
"HEDIS is part of a larger healthcare system that has a lot of blind spots and areas where it could really improve, " Harrington told EHRIntelligence in an interview. "Sexual orientation and gender identity seemed like an area where we could make some significant progress based on how our understanding as a society has changed and how the data has evolved to support that. "
The first thing NCQA changed within HEDIS was the language used surrounding pregnancy. Previously, the quality measures referred to "women with deliveries, " which excluded gender-diverse individuals with deliveries.
To ensure the metric included all pregnant individuals, NCQA removed the gendered language from the measure, changing it to "members with pregnancy."
NCQA also modified measures to improve gender inclusivity in breast and cervical cancer screenings.
Formerly, the cervical and breast cancer screening measures included women within a certain age group. However, this gendered language excluded trans men and non-binary people with a cervix, which has limited cancer screening rates among this at-risk population.
Research from 2019 shows that just 56 percent of trans men with a cervix receive regular cervical cancer screenings, and 10 percent never receive a Pap smear after transitioning.
For HEDIS Measurement Year 2024, NCQA will use the United States Core Data for Interoperability (USCDI) data element "Sex (Assigned at Birth)" to identify individuals for cervical and breast cancer screenings.
Basing the measure on a patient's sex assigned at birth is set to ensure gender diverse individuals eligible for preventive screenings do not fall through the cracks.
"It doesn't matter how you identify or what your gender is, " Harrington emphasized. "If you have a cervix, you should get screened for cervical cancer."
She pointed out that before changing these measures, NCQA reached out to LGBTQ+ clinical communities and community advocacy organizations nationwide to gather perspectives on how quality measurement intersects with access to care.
"They were a great resource for us, " Harrington said. "The LGBTQ community has a long history of effective, passionate advocacy and a willingness to engage with various parts of the healthcare system. Early community feedback focused on aligning our work with the ways transgender and gender-diverse members navigate the healthcare system to access appropriate care."
After releasing the proposed changes to the breast and cervical cancer screening measures, NCQA received feedback from 33 LGBTQ+ community and clinical organizations through a public-comment period.
"I think that shows how engaged they are and how important it is that these infrastructures of our healthcare system reflect what these communities actually need and are shaped by that, " she said. "That was exciting for us and definitely shaped, informed, and directly impacted our decisions around our approaches."
Public comments mostly supported the proposed measure changes, but several technical recommendations informed the final measures.
"We had to navigate the intersection of some specific recommendations with limits in the standardized data available for measurement," Harrington noted.
For instance, NCQA originally proposed to include a category value for intersex members (Sex Parameter for Clinical Use = "Specified"). However, LGBTQ+ stakeholders noted that the category value was not specific enough and would not appropriately identify intersex members needing screening, so NCQA removed that category value from the measure's population.
Additionally, some stakeholders recommended that the breast cancer screening measure include individuals exposed to gender-affirming estrogen therapy.
Harrington noted that two factors prevented NCQA from including this population in the breast cancer screening measure: the duration of data needed and the level of evidence and guidelines available.
"Identifying the type of exposure that can elevate the risk of breast cancer in, for example, transgender women, requires many years of data on record for a patient," she explained. "However, the way our healthcare system collects and maintains data, and how that data tends to sit with specific institutions, makes identifying things over that time frame very challenging."
She noted that current evidence and guidelines on the impact of gender-affirming hormone exposure on breast cancer risk are somewhat equivocal.
"This is an area where the traditional lack of funding and research in gender diverse populations directly impacts our ability to promote high-quality care—until we begin funding and prioritizing such research, we risk perpetuating inequitable clinical practice," Harrington emphasized.
Adjusting existing quality measures to be more inclusive is just the first step in NCQA's health equity work, Harrington pointed out. In the long run, NCQA is focused on creating new, community-informed measures.
"Right now, a lot of what we're doing is taking the quality measures that were developed out of the structures of our current society and tweaking them to try and be more inclusive, but when we talk to LGBTQ+ serving organizations and community members, what matters to them in terms of their own healthcare might not be the same as other communities, " Harrington said.
"What we're really looking ahead towards is, 'What matters to you? What matters to the community? And how do we prioritize that in our measurement approaches?'" she explained.
Harrington also emphasized the importance of normalizing the discussion of SOGI during patient encounters.
"There's this really common tension that you hear about providers being uncomfortable asking for this data or expecting that their patients might be uncomfortable sharing this data," she said.
However, research has shown that that isn't necessarily true for the LGBTQ+ community. A 2017 study published in JAMA Internal Medicine found that while nearly 80 percent of clinicians surveyed said patients would be unwilling to provide SOGI information, only 10 percent of patients said they would be uncomfortable providing it.
"I think helping our healthcare system get more comfortable talking about sex and gender as separate concepts is going to be really important, and not letting assumptions about what's sensitive be a barrier to providing high-quality care," Harrington said.