The Yale School of Medicine has published an article on addressing gender identity biases and forms of discrimination within Electronic Health Records (EHRs). It considers the obstacles and barriers facing transgender and non-binary patients when attempting to access medical care, specifically when filling in medical forms that may “include outdated or discriminatory language.”
Clair Kronk, PhD, a postdoctoral fellow in medical informatics at the University of Yale, has led on a collaborative academic paper and literature review on the topic, and which was recently published in the Journal of the American Medical Informatics Association. The work considers the biases within EHRs and also provides recommendations for improving data representation “in a way that improves transgender patients’ experience as well as gender-diverse research.”
The study – entitled ‘Transgender data collection in the electronic health record: Current concepts and issues’ was released in September and focuses on “sexual orientation and gender identity (SOGI) data collection policies” and methods.
The abstract for the paper explains that there are currently over one million transgender people living in the United States – with “33 per cent reporting negative experiences with a healthcare provider, many of which are connected to data representation in electronic health records.”
The report’s authors add that their work presents “recommendations and common pitfalls involving sex- and gender-related data collection” with the aiming of helping to optimise “individual patient experiences and the efficacy and reproducibility of EHR population-based studies.” Additions to the EHR such as name and pronoun usage are also reflected on and the team adds the “disclaimer that these questions are more complex than commonly assumed.”
Overall, the abstract concludes that “collaborations between local transgender and gender-diverse persons and medical providers as well as open inclusion of transgender and gender-diverse individuals on terminology and standards boards is crucial to shifting the paradigm in transgender and gender-diverse health.”
The Yale School of Medicine report, meanwhile, also cites a 2018 study of 365 Canadian medical schools, which revealed that “only 6 per cent of medical students reported feeling that they had adequate knowledge relating to transgender care” and also notes that outdated terms are still used in EHR systems and that using an “other” category on patient forms is “exclusionary language that may alienate transgender or nonbinary individuals.”
To address this, recommendations from the full paper include a “two-step self-identification approach” which enables people to “specify both their gender identity” – with the options listed including female, male, nonbinary, questioning, not listed, or prefer not to disclose – as well as their “assigned gender at birth, or the gender that appears on their birth certificate” with options including unsure or not wishing to disclose.
Speaking to the Yale School of Medicine, Kronk said: “This is the first time that 17 trans authors got together and said, ‘This is what we want and what we need’…a lot of the current standards and recommendations may have only one transgender author. But the whole paradigm of research should be ‘nothing about us without us.’
“Implementing these recommendations will allow for more individualised care on a patient level that is not only affirming, but also in line with current research for best practices and standards of care…our long-term goal is to create better health standards that are more equitable. And we hope that this will also entail funding and training, and keep providers up to date about their potential biases and how we can facilitate eliminating them.”