New Study Shows Difficulty of Identifying Transgender Individuals Using EHR Data

Mar 12, 2021

By Katherine H. Crawford, MA, PMP, ASCO Communications

In order to understand and eliminate disparities in cancer incidence and outcomes among transgender people, clinicians and researchers must have data. However, this data is very difficult to obtain because gender identity data are not routinely collected in oncology practice health records.

A new study published in JCO Oncology Practice reports what researchers found when they used ASCO’s CancerLinQ Discovery® database to try to identify transgender people with cancer based on electronic health records (EHR).1 CancerLinQ is a real-world oncology data platform developed by ASCO that collects and aggregates longitudinal EHR data from oncology practices throughout the United States. By using data from more than 2 million patients in near real time, CancerLinQ can identify trends and associations between myriad variables, thereby enabling physicians to generate new hypotheses and apply those conclusions to improve care in real-world settings.

In the study, “Identification of transgender people with cancer in electronic health records (EHR): Recommendations based on CancerLinQ observations,” the investigators initially identified 557 patients who had either specific diagnostic codes or combinations of cancer diagnoses and genders that suggested transgender identity; from this group nearly 250 charts were abstracted to assess transgender identity. A de-identified data set was then reviewed.

As the authors note, EHRs sparsely and inconsistently capture gender identity, and the reasons vary. Some EHRs do not contain structured variables to capture gender identity data, or reporting requirements may not support the collection of gender identity. Patients may not be asked or may not be asked in a manner that is patient-centered. Additionally, patients may not be safe to be open about their identities or may not feel that gender identity is relevant to the medical encounter.

“Data on cancer prevalence and outcomes for transgender people are urgently needed to understand and intervene in disparities,” said lead author Ash B. Alpert, MD, a hematology and medical oncology fellow at the University of Rochester Medical Center’s Wilmot Cancer Institute. “Presented with the challenges in gathering this data, we thought using gender and primary site of malignancy comparisons in CancerLinQ could be an effective way to retrospectively identify some transgender people with cancer.”

When the authors examined the de-identified data that had been abstracted, 76% of the patients with diagnostic codes suggestive of transgender identity were, in fact, transgender. However, when the authors examined cases with specific cancer diagnoses and recorded gender that suggested transgender identity—i.e., male gender and a diagnosis of cervical, endometrial, ovarian, fallopian tube, or other related cancer; or female gender and a diagnosis of prostate, testicular, penile, or other related cancer—they were only able to confirm transgender identity in 2% and 3% of patients, respectively. Extrapolating from the number of patients found to the entire CancerLinQ database, which was 1.3 million patients with cancer at the time of the study, these criteria would only identify 0.003% of the total population as transgender.

Given that transgender people are estimated to make up 0.6% of the U.S. population,2 the number identified using EHR data is exceedingly low, underscoring the urgent need to accurately capture this demographic data prospectively. Finding mechanisms to systematically collect accurate gender identity data will be key to reducing disparities in treatment and outcomes experienced by transgender patients with cancer, as will altering health systems to be safe and inclusive for all patients.

“These data underscore the pressing issue confronting transgender people with cancer: that they are invisible,” said senior author Don S. Dizon, MD, FACP, FASCO, director of the Breast and Pelvic Malignancies Program at Lifespan Cancer Institute and head of Community Outreach and Engagement at The Cancer Center at Brown University. “If we are to improve the quality of care for all, we must begin by accurately accounting for the diversity inherent in our communities, including those who are transgender. This calls for the systemic ability to collect gender information, beyond male and female, and that policies and processes are in place to confront discrimination. The ultimate goal is a safe and respectful environment for the entire community we serve, and that includes transgender people, as a vital part of the high-quality, accessible care that all patients with cancer deserve.”

Last year ASCO called for new actions to reduce disparities in cancer outcomes, including specific recommendations to further support sexual and gender minority populations. For example, ASCO recommended that sexual orientation and gender identity data collection and reporting be required in cancer research and institution-level efforts to examine and rectify implicit biases or discrimination toward patients, families, and health care workers. Reducing disparities in cancer care is an ASCO priority as the Society strives to ensure all patients receive the highest quality and equitable cancer care.

Read the full JCO Oncology Practice original report.

Related Resources

References

  1. Alpert AB, Komatsoulis GA, Meersman SC, et al. Identification of Transgender People With Cancer in Electronic Health Records: Recommendations Based on CancerLinQ Observations. JCO Oncol Pract. 2021;17:e336-e342.
  2. Flores AR, Herman JL, Gates GJ, et al. How many adults identify as transgender in the United States? Los Angeles, CA: The Williams Institute, 2016.

 


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