For transgender or non-binary patients, barriers to accessing medical care often begin as soon as they enter their doctor’s office. While many patients don’t think twice about sex or gender issues when filling out patient admission forms in the waiting room, for the over 1 million transgender people living in the states – United only, answering such questions can be difficult. – especially when these forms contain outdated or discriminatory language.
According to Clair Kronk, PhD, postdoctoral fellow in medical informatics, policies for collecting data on sexual orientation and gender identity (SOGI) are often put in place in healthcare facilities without sufficient knowledge to meet the needs of patients. transgender patients. To address common biases in electronic health record (EHR) systems, transgender researchers from institutions in the United States and Canada partnered with Kronk as lead author to publish an article in the Journal of the American Medical Informatics Association. They presented their recommendations for improving the representation of EHR data in a way that improves the transgender patient experience as well as gender research.
“This is the first time that 17 trans writers have come together and said, ‘This is what we want and what we need,'” says Kronk. “Many current standards and recommendations may have only one transgender author. But the whole research paradigm should be “nothing about us without us”.
About a third of transgender patients reported negative interactions with their healthcare providers, and fear of abuse deters 23% from seeking care, according to a survey by the National Center for Transgender Equality. Transgender people cited gender abuse, pathologization and other forms of discrimination as reasons to avoid their doctor’s office. For example, discriminatory terms such as “sodomy”, “transvestite fetishism” and “transsexual syndrome”, the authors report, are still used by some health professionals. Further, they continue, although many transgender people are neurodiverse, it is not uncommon for other transgender patients to see their transgender herself characterized as schizophrenia, borderline personality disorder, autism or other disorders.
To combat the forms of discrimination that persist in electronic health records, Kronk’s team performed an in-depth literature review and presented recommendations for improving SOGI data collection.
“Implementing these recommendations will allow for more individualized care at the patient level, which is not only positive, but also consistent with current research on best practices and standards of care,” says Kronk.
In a 2018 study of 365 Canadian medical schools, only 6% of medical students said they felt they had adequate knowledge about transgender care. Due to this glaring lack of knowledge in the medical communities, many providers do not know how to ask for a patient’s gender identity. Obsolete terms such as “MTF” (male to female), “FTM” (female to male) and “transgender male / female” are still frequently used in EHR systems. Additionally, the inclusion of an “other” category on patient forms is exclusionary language that can alienate transgender or non-binary people.
Instead, the authors ask the American Medical Informatics Association and its members to take a two-step self-identification approach when collecting data related to a patient’s SOGI. This method (see figure) allows individuals to specify both their gender identity (female, male, non-binary, interrogative, unlisted or prefer not to disclose) and the gender assigned to them at birth, or gender that appears on their birth certificate. This approach, according to the authors, not only validates the identity of patients, but also allows for more in-depth and precise data analysis.
“We can’t do clinical trials if we don’t form the groups properly,” says Kronk. “This method will facilitate the construction of research cohorts. In addition, the two-step method, write the authors, has been recommended by several leading institutions, including the UCSF Center of Excellence for Transgender Health, Fenway Health in Boston, the Mayo Clinic and the United States Centers for Disease Control and Prevention.
In addition to endorsing the two-step method, the authors also review the pros and cons of karyotyping and organ inventories, processes used to examine patients’ chromosomes and better understand their anatomy, respectively. Although there are cases in which taking these measurements can provide important health information, they are not always medically necessary. The authors call for more research on the ethical implementation of these two processes.
Ultimately, Kronk says, taking these steps is just a starting point for optimizing care for transgender and other marginalized patients. Last year, she was eliminated from a COVID-19 vaccine trial after revealing her transgender status. But how, she asks, can providers provide equitable care to transgender and non-binary people when they are excluded from medical research? Kronk hopes his team’s recommendations will help promote greater representation of diverse groups in clinical trials.
“Our long-term goal is to create better health standards that are more equitable,” says Kronk. “And we hope this will also involve funding and training, and keep providers informed of their potential biases and how we can facilitate their elimination. “