The National Committee for Quality Assurance is updating its Healthcare Effectiveness Data and Information Set performance measures for health insurance companies next year with an eye toward health equity and personalized medicine.
One key change to HEDIS could drive insurers to rethink how they determine the anatomies of their members by encouraging more precise gender- and sex-related interventions. The NCQA primarily seeks to better align screening recommendations for transgender patients, but has broader implications for the burgeoning movement to utilize a so-called anatomical inventory, an evidence-based system catering to the needs of each patient based on their own body.
The quality oversight and accrediting organization aims to nudge health insurers to include transgender people in preventive screenings for cervical and breast cancer, for example. The NCQA identified and is removing language from eight HEDIS measures that wrongly use gender to determine screening eligibility, said Rachel Harrington, senior research scientist of health equity at the NCQA.
“Right now, we are trying to bring in transgender and gender-diverse members into the measure. The idea being, over time, we can really push organizations on the more specific clinical standards,” she said.
Health insurance companies and oversight bodies historically have used gender as a proxy for sex at birth and assumed the anatomies of their policyholders accordingly. For instance, trans women are often recommended for cervical cancer screenings despite not having cervixes. Similarly, trans men who haven't received bilateral mastectomies are often overlooked for breast cancer screenings.
This traditional method is imprecise and unsustainable because it presumes rather than assesses what organs patients have and, as a result, sometimes recommends the wrong care, Harrington said. Insurers and providers seeking to solve this problem are piloting new technologies that track changes to patients’ bodies at a more granular level, she said.
The new standards will require insurers to collect data on sexual orientation, gender identity and sex assigned at birth, and to understand the distinctions and correctly classify transgender patients, Harrington said.
Healthcare organizations need to routinely collect information on gender identity, sex assigned at birth, pronouns, and legal and preferred names, according to researchers from the Fenway Institute, a research arm of Fenway Health, a federal qualified health center in Boston specializing in LGTBQ care. Insurers should also enable members to update personal information at any time via member portals, the institute recommended in 2021.
“It all comes back to these core concepts of what questions are you asking and what do you think you're representing by the answers?” Harrington said. “A lot of organizations default to a gender question. They say, ‘Male or female?’ But are you talking about gender? Are you talking about sex? Male and female doesn't even cover the gender options. There is a lot of confusion in just the concepts that single question is representing.”
Data on sexual orientation and gender identity facilitate communications with trans policyholders. However, these facts still fall short of predicting a person’s anatomy. Many trans patients undergo medical and surgical interventions to better align their bodies with their gender identities, which necessitates a more precise way to track what organs they have. To do this, Fenway Health is testing an anatomical inventory.
An anatomical inventory takes stock of what organs a specific person has rather than making assumptions based on sex. Adopting this approach could have far-reaching implications for personalized medicine for all patients, Harrington said.
For instance, insurers could use an anatomical inventory to identify a cisgender woman who had a double mastectomy and avoid recommending a mammogram. They could also integrate genetic data and develop a granular view of a policyholder's health risks. Few companies have adopted anatomical inventories but some insurers and data vendors are laying the groundwork, said Harrington, who would not name the companies.
“They actually see anatomical inventory being the easier thing to transition to because it makes such clinical sense and you don't have to worry about these disagreements in data,” Harrington said. “The anatomical inventory is easy because it says: ‘As of this date, this was present or absent,’ and you track it that way.”
Fenway Health piloted an anatomical inventory for its transgender care clinic to better track patients’ reproductive organs. The electronic health record system includes a checklist that allows clinicians to mark whether a patient has organs such as breasts, ovaries, a uterus, a cervix, a vagina or a penis. The anatomical inventory also allows clinicians to note whether a patient has undergone a mastectomy or a vaginoplasty, for example. The tool prompts providers to ask patients about their sexual histories and explain how these questions relate to their care.
In addition to new requirements around screening trans patients, the NCQA is expanding race and ethnicity stratifications via eight new HEDIS measures. Next year, insurers will have to include such breakdowns for metrics related to post-hospitalization mental healthcare, cervical cancer testing, prenatal and postpartum depression screenings, childhood and prenatal immunizations, and kidney health and eye exams for diabetes patients.
Clarification: This story has been updated to specify that the NCQA is removing gendered language from eight HEDIS measures, not eliminating them completely.