‘Comprehensive training’ needed to eliminate cancer care barriers for transgender individuals
Click Here to Manage Email Alerts
Self-identifying transgender individuals assigned female at birth face three key barriers when seeking care for breast or gynecologic cancers, according to results of a qualitative study published in JAMA Network Open.
These barriers include lack of awareness, such as health care avoidance or pronoun misuse within the health care system; access challenges, including limited insurance coverage or identifying trans-competent clinicians; and clinical challenges, including mental or physical health concerns.
“The implications of these findings are wide ranging and urgent. They emphasize the need for comprehensive training for oncologists and other health care providers on the unique challenges these patients face,” co-author Augustine Annan, PhD, senior staff data scientist at IMO Health, told Healio. “Clinicians need to become more familiar with gender-affirming care — not just in terms of sensitivity, but also in terms of understanding the medical complexities that arise in treating patients with cancer who are transgender.”
Annan and colleagues analyzed social media sites Reddit, X and YouTube to identify key themes regarding disparities that transgender individuals face when seeking care for breast or gynecologic cancers.
Researchers used keywords and a large language AI model to filter data collected from January 2012 to December 2022. They gave the large language model definitions of preestablished themes and patient trajectory stages to classify posts.
The assessment of 30 million social media posts resulted in 1,235 posts pertinent to the study — 375 (30.4%) pertaining to breast cancer, 320 (25.9%) related to cervical cancer, 420 (34%) pertaining to endometrial cancer and 120 (9.7%) related to ovarian cancer.
More than half (65.7%; n = 811) of 1,205 relevant posts reflected lack of awareness on either the personal or systemic levels.
Researchers found misuse of pronouns at the systemic level cited in 120 (16.5%) of 725 relevant posts, and they found health care avoidance cited in 71 (76.7%) of 93 personal perspective posts.
Additionally, researchers identified 520 posts about access issues, with nonfinancial concerns accounting for 374 (71.9%) of them. Financial concerns appeared in 64 (31.8%) of 201 relevant posts.
Healio spoke with Annan about the findings, the necessary steps that may help overcome the barriers identified, and his team’s next steps in research.
Healio: Why did you conduct this study?
Annan: This stemmed from personal stories, literature, news and available insights we’ve gained from our social media research. One particular story that will always have a lasting impact was from a transgender man who shared his experience with cancer. His ordeal was not just related to the disease itself — it was about a feeling of alienation in health care settings. He mentioned that, during a routine cervical cancer screening, he was repeatedly misgendered by the health care staff and asked very invasive questions. His deep discomfort, and the vulnerability that it created, led him to avoid future medical care.
In addition to these individual stories, there is a growing body of literature and news reporting that underscores the health care disparities transgender people face.
Healio: How did you conduct this study?
Annan: We first collected data from social media platforms. It wasn’t initially a keyword search — it was a very large data collection based on all keywords related to the LGBTQIA+ community with cancer. We then explored these lived experiences of transgender individuals who are navigating breast or gynecologic cancers. We employed a hybrid methodology that combined a qualitative content analysis with advanced AI tools.
Healio: Can you elaborate on the barriers you identified?
Annan: The three major themes that emerged from the data were lack of awareness, access issues and clinical challenges. Each of these themes played out differently across the various stages of the patient journey.
One striking example of lack of awareness was identified during the prevention and screening stage. We saw some individual posts from transgender people that suggested they were terrified to even get checked. They stated that during previous screenings, they were stared at in the waiting room or made to feel like they didn’t belong. This often leads to LGBTQIA+ individuals avoiding many potentially lifesaving cancer screenings. In another specific post, a patient who was misgendered during a mammogram recalled that the nurse asked them if they were in the right place.
In terms of the treatment stage, one notable example was an insurance company’s denial of chemotherapy to a transgender patient because the legal documents didn’t match the insurance criteria.
There are many forms of gatekeeping that reflect the financial and systemic barriers that these individuals face, and these barriers delay critical care and treatments.
Healio: What are your next steps in research?
Annan: We want to focus specifically on breast cancer among transgender women. We also want to deepen the application of AI in analyzing these health disparities, not only for transgender people or transgender people with cancer, but also other marginalized communities. We want to extend our research to include an intersectional analysis of race. We are very confident AI is going to play a critical role in scaling these studies. We are still going through our manual annotations, but we want to scale these studies to allow us to process very large datasets from diverse populations and subpopulations.
Healio: Is there anything else you would like to mention?
Annan: The voices of transgender patients must be the center of these discussions. This research is not just about identifying disparities, it’s about empowering those who are marginalized to lead the conversation about their own care. Our work has shown how AI can elevate these voices, but meaningful change will only come when health providers, policymakers and the transgender community collaborate to co-create solutions.
Reference:
For more information:
Augustine Annan, PhD, can be reached at aannan@imohealth.com.
Collapse
Healio Interviews
Click Here to Manage Email Alerts