Grant: Planning and Dissemination Grant - Institute Community Support

Most existing digital health information systems (DHIS) like Electronic Health Records use a single field to record a patient's sex and gender. But sex and gender are two different concepts. Having inaccurate sex and/or gender data has harmed patients and contributed to health inequities. Sex information has been the basis for making assumptions about a person's anatomy such as reproductive organs. This assumption is then used for preventive care, interpretation of diagnostic tests, and treatment planning. In our existing systems, the single sex data field is inadequate for this purpose. It incorrectly assumes that sex, and corresponding anatomy and hormones, are unchanging over the human life span. While these incorrect assumptions can affect all patients, they disproportionately affect appropriate screening, diagnosis, or treatment for Two-Spirit, transgender, non-binary and intersex patients. Future DHIS will allow clinicians to use a new sex field (Sex Parameters for Clinical Use) just for clinical decision making. Ideally, the clinician using this field will be able to link relevant patient-specific data from an anatomic or hormone inventory as part of preventive screening, lab reference ranges or equipment settings. Having these individualized anatomic information will ensure meaningful, respectful, and comprehensive interactions between clinicians and individuals. However, anatomic inventories are not in widespread use yet, and there is no standard design or implementation for these across software vendors or health systems. With a robust anatomic inventory, patient care could be individualized. This project will consult with affected parties, such as clinicians, patients, health data standards experts and policy makers/researchers. These sessions will help us to understand the gaps and opportunities in designing and implementing anatomic inventories in DHIS for better clinical decision making and appropriate high quality inclusive healthcare.