A group of health IT scientists has created a model for documenting and sharing electronic health records that more fully incorporates information about patients’ sex and gender representation to promote better health equity for gender-marginalized people.
Accurate portrayal of a patient’s sexual characterization and gender identity has long posed a challenge to healthcare institution documentation systems. For decades, these systems have traditionally had a field for representing both sex and gender in paper or electronic health records, often with two choices, male or female.
“We know the human condition has never been easier,” Robert McClure, MD, a computer scientist in Colorado, told AHCJ. “It stayed that way for a long time, but we knew it was creating problems.” Some health care institutions began recording additional information on patient preferences, but it was not in an easily shared universal language.
Now, McClure and other computer scientists, working for two years on their Gender Harmony project, have developed a more gender-inclusive model to be incorporated into health systems, enabling the documentation and sharing of electronic health records. The model of gender harmony what? published by Health Level 7 International (HL7) Other reported in the Journal of the American Medical Informatics Association. HL7 is a group of clinical standards and messaging formats that provide a framework for integrating, exchanging and retrieving electronic information between different health systems.
Within the new model, clinical sex (described as “sex for clinical use”) represents people as female, male or “specified” – a flag to indicate that specific observations need to be reviewed to best determine how to best manage the patient. The determination of a useful sexual categorization is based on factors such as; anatomical or biological characteristics, or it can be associated with physical and physiological characteristics. Gender identity indicates a person’s sense of self and cannot be assigned or determined by another. Crucially, the model provides clinicians with the information they need to support informed and safe healthcare for each patient based on an accurate representation of gender and sex, the authors noted.
The model outlines five main pieces of data that the authors propose to include in patient information to enable clinicians to make accurate decisions:
- Gender identity – Someone’s personal sense of being a man, woman, boy, girl or something else.
- Registered sex or gender – A sex or gender value that is already listed in the records or is a context-specific value, such as the sex assigned at birth.
- Gender for clinical use – A characterization of sex used for medical decisions that is based on specific observations associated with sex. These observations may include an investigation of the person’s organs, hormone levels, or chromosomes. The selection options are masculine, feminine or “specified”, which the authors consider preferable to the word “other” present in some clinical systems because it is not stigmatizing and explicit.
- Name to use – The name the patient has indicated they want to use in health interactions.
- Pronouns – The set of third person pronouns used by the patient (i.e., she / she).
“We have known for two decades that implementing inclusive sex and gender data collection practices in clinical systems is a critical first step in eliminating data invisibility and addressing health disparities for gender-marginalized people,” the authors wrote. “But accurate representation of sex and gender diversity in clinical systems and standards is a challenge for many reasons, and adoption has been slow and sporadic.”
Some problems reported in the article were the lack of a common understanding of sexual and gender terminology; a binary representation of sex and gender (i.e. male / female and man / woman); the assumption that gender identity is static; and the presumption that quality clinical care can be provided to all individuals on the basis of sex or administrative gender alone, defined as the gender that a person is considered to have for administrative or registration purposes.
The new model is a solution whose time had come, McClure said. About 33% of transgender people in the United States have had at least one negative experience with a healthcare provider, and 23% reported not seeking assistance when needed for fear of mistreatment. according to a recent study. Practices that support the acquisition and inclusive exchange of information about sex and gender health care can support culturally safe and gender-affirming health care and, in theory, reduce the effects of stigma on health outcomes, have stated the authors.
Members of the Gender Harmony Project have begun working with the HL7 standards community to incorporate these proposed changes into the assorted programming interfaces used by healthcare technologies and institutions. When these improvements are implemented, the authors write, data exchange between healthcare organizations will improve the patient experience by both reducing the requirements for data re-entry and improving the reliability of sex and gender information made available to clinicians.
“The goal is to ensure we have all the information needed to treat patients in the best possible way,” said McClure. “We know we have not done as good a job as we had to do for an important segment of the population. This is what we are trying to change. “
Resources for journalists
In addition, the Society of Professional Journalists offers a Hotline by race and gender through which reporters and other news staff can obtain confidential, non-judgmental answers to questions about the sensitivity of their stories from experienced black and LGBTQ journalists.