Medical documentation systems processing paper-based or electronic medical records, such as admission forms or medical reports, typically offer a binary male or female option for the administrative sex attribute, poorly accounting for alternatives, while offering generally only one option for first name. This is often problematic for trans and/or non-binary (TNB) people, as it can lead to uncomfortable situations (misgendering), misunderstandings, postponements and renunciation of care, and even misdiagnoses. This situation is also problematic for professionals caring for TNB patients and for inclusive research into sex and gender diversity. The fact that sex and gender identity information is not recorded in a differentiated and standardized way can also pose research, quality insurance and statistical problems when analyzing medical information collected for other purposes, as it is not known whether, under the sex/gender category, the information collected corresponds to the administrative sex/gender, biological sex, or gender identity of the person.
Our specific objectives are:
1. to review practices, opinions, needs and preferences concerning sex, gender identity, and associated attributes (i.e., official and chosen first name(s), honorifics, pronoun(s)) used in electronic medical and health records (EMRs & EHRs), abroad and in Switzerland;
2. to select evidence-based and expert-validated attributes concerning sex, gender identity, and associated attributes with a standardized nomenclature;
3. to pilot test the feasibility, usability, and acceptance for both patients and healthcare professionals of these attributes; and
4. to develop and disseminate a national guideline on the attributes and their proper use, based on the results of the pilot test and the consensus of a stakeholder advisory group.
Our research plan involves seven steps to achieve the four objectives, using participatory methods and a collaborative approach that actively engages the community and affected stakeholders in every stage of the research. We will work closely with community members, associations, and other stakeholders by establishing a stakeholder advisory board at the outset of the project.
This project will deliver an evidence-based and expert-validated guideline on effectively capturing sex- and gender-related information in administrative and clinical medical documentation. Endorsed by key stakeholders, these recommendations can be integrated into various health and medical forms and systems, thus having a direct practical significance in everyday clinical care.
