Editor’s Note: This month’s issue of Health Affairs also features a personal essay by a transgender doctor about meeting the health care needs of transgender patients.

As transgender people become increasingly visible, so have the challenges they face in our health care system. In response, the Association of American Medical Colleges (AAMC) recommends better educating providers on how to competently care for transgender patients, and the Institute of Medicine (now the National Academy of Medicine) recommends collecting gender identity information in electronic medical records and conducting more research around transgender health.

Moreover, recent findings suggest that some health care quality measures inappropriately include or exclude transgender people and are not tailored to address the unique needs of this population. The US health care system must adapt current quality measures to transgender individuals to achieve the recommendations of the National Academy of Medicine and the AAMC.

Problematic Health Care Quality Measures

Some health care quality measures use sex designations to identify which patients should be measured (for instance, measures that assess the percentage of patients screened for breast, prostate, or cervical cancers). Using sex to identify populations for quality measurement improperly excludes or includes transgender patients, since a transgender person’s sex-identifier may not accurately represent their physiology. Furthermore, the measure specifications may not align with clinical guidelines for transgender people.

Sex-specific quality measures offer no assurances that transgender patients’ care adheres to practice guidelines for this population. Adapting health care quality measures to transgender populations will not only ensure that providers are being held accountable for the care they deliver to transgender patients but will educate providers about the health care needs of their transgender patients, incentivize the collection of gender identity information in electronic medical records, and spur additional research focused on transgender health.

Educating Providers Through Inclusive Quality Measures

Provider education on the health needs of transgender patients is a relatively recent addition to medical educational curricula. A 2011 study showed that US and Canadian physicians were trained a median of five hours in lesbian, gay, bisexual, and transgender (LGBT) health. In a new pilot study, the median number of hours recent medical students were trained in LGBT health jumped to 22, yet students reported particular discomfort with caring for transgender patients.

Nevertheless, studies have shown a positive correlation between educating medical students about transgender health and the students’ overall comfort with treating transgender patients. Measures adapted to transgender people offer an opportunity to educate providers about the health needs of their transgender patients. Particularly, if transgender-inclusive quality measures are specified in value-based delivery models, providers will be required to comply with transgender-specific practice guidelines, thereby affording them the opportunity to learn about the care standards of transgender patients and become more comfortable treating this population. Above all, this population-specific reporting framework would benefit providers who did not receive adequate, or any, training in transgender health.

Encouraging Data Collection On Gender Identity

Proper data collection for transgender patients, including a patient’s gender identity, is essential to accurate quality reporting. Without the correct data, providers cannot identify in their records which patients are transgender.

In 2015, the federal government required providers participating in the meaningful use program (which has been folded into the Merit-based Incentive Payment System, or MIPS) to collect data on patients’ gender identity in their electronic medical records. The adoption of transgender-inclusive measures, particularly in value-based delivery models, will further require all providers to identify transgender patients in their electronic medical records—not just those providers who participate in MIPS. By fostering inclusive data collection for transgender individuals, researchers will be better equipped to study the health needs and outcomes of this population. To conduct research with any degree of scientific validity, the routine collection of gender identity information is essential. The National LGBT Health Education Center has issued recommendations for how to properly collect gender identity data.

Spurring More Robust Research Around Transgender Health

Research and professional organizations rely on robust scientific evidence when developing quality measures. Some organizations have published practice guidelines for transgender patients; however, many of these recommendations rely on a limited number of studies. As researchers begin to include transgender patients in quality measures, they will be well-served by more research on transgender health. Additional studies will be necessary to continuously inform quality measures to assure transgender patients receive proper care. The demand for additional evidence will encourage researchers to focus on transgender health.

While randomized controlled trials are the gold standard for producing scientific evidence, feasibility and ethical considerations may limit the use of this methodology in transgender health research. Researchers have suggested that observational comparative studies could provide robust evidence for guidelines around transgender health. Such studies may require gathering patient data across many clinics, which highlights the importance of routine collection of gender identity data across different practice settings.

What’s Next?

A recent study published in the American Journal of Public Health found that transgender patients had poorer general health compared to cisgender patients (that is, individuals whose gender identity matches the sex assigned to them at birth). However, as quality measures are ill-adapted to account for transgender patients, it is difficult to hold providers accountable for the quality of the care they deliver to this population. Furthermore, as the US health care system shifts toward value-based delivery models, such as accountable care organizations and other alternative payment models, public health professionals and payers increasingly rely on quality measures to ensure that the quality of care provided to patients is not affected by cost-containment actions.

Failure to properly consider transgender populations in quality measurement can lead to increased payments to providers that may not reflect the quality of care delivered to all patients—especially this vulnerable group. Holding providers accountable for the quality of care delivered to their transgender patients is necessary to appropriately reward high-quality care provided to all populations. However, to hold providers accountable for this population, the quality measures themselves must be changed.

Organizations that measure health care quality (such as the National Quality Forum, the Centers for Medicare and Medicaid Services, the National Committee for Quality Assurance, and the Agency for Healthcare Research and Quality) should use already existing guidelines—such as those published by Fenway Health, the World Professional Association for Transgender Health, and the University of California, San Francisco—to adapt quality measures that rely on sex-specific criteria. Inclusive quality measures, incorporated into value-based delivery models, offer a mechanism to achieve the recommendations outlined by the National Academy of Medicine and the AAMC. By holding providers financially responsible for the quality of care provided to transgender patients, we can educate providers about transgender health and encourage inclusive data collection. Finally, the establishment of uniform data collection allows for more robust data repositories that can be leveraged by researchers to adequately study the health care needs and outcomes of this population. Inclusive quality measures must be incorporated into the health care system to reflect the quality of care provided to all patients—not just cisgender ones.

Authors’ Note

The authors’ research was funded by RTI International.