IALH Research Fellow Karen L. Courtney has co-authored a new research analysis entitled An Environmental Scan for Anatomical Inventories. Collaborating authors include Kelly S. Davison, and Amédé Gogovor, with Susan Alexander as an editor. This analysis was published in Computers Informatics Nursing.
Abstract:
Poor-quality representations of sex and gender (ie, an “M” or an “F”) in digital health information systems (DHIS) do little to reduce assumptions about the organs a person has and can lead to negative health outcomes and health disparities, especially for transgender, nonbinary, and gender-diverse people.1–3 For example, cancer screening systems often rely on recorded sex or gender information (ie, an “M” or an “F”) to qualify patients for sex-related organ preventive screening and send out automatic reminder to patients. However, not all individuals with a prostate identify as men, and not all individuals with a cervix identify as women. Inaccurate assumptions about the presence or absence of an organ such as a prostate or a cervix can result in missed opportunities for prevention or inappropriate patient reminders. Digital health standards development organizations, healthcare organizations, and DHIS vendors have begun developing standards to address and mitigate poor representation. The Health Level Seventh (HL7 International) Gender Harmony Project, as a key example, has developed the HL7 Gender Harmony Cross Paradigm Implementation Guide,4 which expands upon and refines the now retired 2021 HL7 Informative Document: Gender Harmony—Modeling Sex and Gender Representation, Release 1, and allows for the provision of contextual information to support safe and affirming clinical decision-making, including an anatomical inventory.
An anatomical inventory reduces clinical assumptions by listing the organs that a patient does or does not have.3,5,6 When used in conjunction with patient information such as sex at birth, gender identity, surgical history, medication information, and hormonal milieu, the anatomical inventory can add precision to clinical decisions and improve the quality of person-centered healthcare for all people. However, there are presently no known standards to support the development, use, or implementation of anatomical inventories in DHIS. Furthermore, little is known about the use of anatomical inventories in clinical practice or population health. Our team set out to conduct an environmental scan to discover existing materials about anatomical inventories in the gray literature in the Canadian healthcare landscape.
The environmental scan is a method of gathering evidence on subject matter of interest to inform decisions and can include gathering data from nonperson (eg, scans of literature including legislation, regulatory standards, published literature on a topic, organizational documents) and person sources of data (eg, speaking with informants).7,8 Methods used to conduct environmental scans are diverse and are not standardized; however, they can be broken down into those that use passive (looking at resources) and active (looking for resources) methods for data collection.7 For this environmental scan, we actively searched for content about anatomical inventories and focused on gray literature produced by Canadian healthcare professional organizations and agencies. Our rationale for using this approach is that gray literature often captures recent developments in clinical practice that may not yet be represented in the peer-reviewed evidence and can help reduce publication bias. A separate scoping review of the peer reviewed literature was undertaken and is under review separately.
This environmental scan focused on Canadian sources as there has been significant interest expressed about anatomical inventories in Canadian standards groups and by affected communities in the last several years. In September 2024, the Canadian Institute for Health Information released the review version of the Pan-Canadian Health Data Content Framework.9 One of the data elements contained in the Pan-Canadian Health Data Content Framework is the “Sex Parameter for Clinical Use,” which aligns with the Gender Harmony Model4 and is acknowledged to be a place where information from an anatomic inventory can be used. Canada is one of the very first countries to begin to use modernized gender, sex, and sexual orientation standards at the national level, and we felt it was therefore more likely to have gray literature regarding anatomical inventories.
To read the full analysis, see https://doi.org/10.1097/cin.0000000000001298