A group of health informaticists has created a model for electronic health records documentation and sharing that more fully incorporates information about patients’ sex and gender representation to promote better health equity for gender-marginalized people.
Accurate representation of a patient’s sex characterization and gender identity has long posed a challenge for health care institutions’ documentation systems. For decades, these systems have traditionally had one field to represent both sex and gender in paper or electronic health records, often with two choices, male or female.
“We’ve known the human condition has never been that simple,” Robert McClure, M.D., a physician informaticist in Colorado, told AHCJ. “It stayed that way for a long time, but we knew it was creating problems.” Some health care institutions have begun recording additional information about patient preferences, but it wasn’t in an easily shared universal language.
Now, McClure and other informatics experts, working for two years on their Gender Harmony Project, have developed a more gender-inclusive model to incorporate into health care systems, allowing documentation and sharing of electronic health records. The Gender Harmony Model was published by Health Level 7 International (HL7) and reported upon in the Journal of the American Medical Informatics Association. HL7 is a group of clinical standards and messaging formats that provide a framework for integration, exchange and retrieval of electronic information across different health care 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 must be reviewed to best determine how to manage the patient. Determination of a useful sex categorization is based on factors such as; anatomy or biological characteristics, or it can be associated with physical and physiological features. Gender identity indicates a person’s sense of self and cannot be assigned or determined by another. Fundamentally, the model provides clinicians with the information required to support informed and safe health care for every patient based on accurate representation of gender and sex, the authors noted.
The model outlines five major data elements that authors propose be included in patient information to allow clinicians to make accurate decisions:
- Gender identity – Someone’s personal sense of being a man, woman, boy, girl, or something else.
- Recorded sex or gender – A sex or gender value already listed in records or is a context-specific value, such as sex assigned at birth.
- Sex for clinical use – A sex characterization used for medical decisions that is based upon specific sex-associated observations. These observations may include a survey of the person’s organs, hormone levels or chromosomes. Selection options are male, female, or “specified,” which the authors deem preferable to the word “other” found in some clinical systems because it is non-stigmatizing and explicit.
- Name to use – The name that the patient has indicated they wish to use in health care interactions.
- Pronouns – The third-person pronoun set used by the patient (i.e., she/her).
“We have known for two decades that implementing inclusive sex and gender data collection practices in clinical systems is a critical first step to 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 issues noted in the article have been a lack of common understanding of sex 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 delivered for all individuals based solely on administrative sex or gender, defined as the gender a person is considered to have for administration or record-keeping purposes.
The takeaway
The new model is a solution whose time had come, McClure said. Some 33% of transgender persons in the United States have had at least one negative experience with a health care provider and 23% have reported not seeking care when needed because of fear of mistreatment, according to a recent study. Practices that support inclusive sex and gender health care information capture and exchange can support culturally safe and gender-affirming health care and, theoretically, reduce the effects of stigma on health outcomes, the authors said.
Members of the Gender Harmony Project have begun working with the HL7 community of standards to incorporate these proposed changes into the assorted programming interfaces used by technologies and health care institutions. When these improvements are implemented, the authors wrote, the exchange of data between health care organizations will improve the patient experience both by reducing requirements for data re-entry and improving the reliability of sex and gender information made available to clinicians.
“The goal is to ensure that we capture all the information necessary to treat patients in the best way possible,” McClure said. “We know we didn’t do as good a job as we needed to do for an important segment of the population. That’s what we’re looking to change.”
Resources for journalists
- Coverage of the JAMIA paper by EHR Intelligence and by Healthcare IT News
- Blog post by study coauthor Steven Posnack, deputy national coordinator for health information technology, Office of the National Coordinator for Health Information Technology (ONC)
- HL7 International, a nonprofit standards developing organization dedicated to providing a framework for the exchange of electronic health information related to clinical practice
- Canada Health Infoway, a group doing similar work in Canada
- Blog posts presenting an overview of HL7 by iNTERFACEWARE Inc. and by Paessler.com
Also, the Society of Professional Journalists offers a Race & Gender Hotline through which reporters and other news personnel can get confidential, nonjudgmental answers to questions about the sensitivity of their stories from experienced Black and LGBTQ journalists.
