Karen L. Courtney, RN, PhD
Associate Professor
School of Health Information Science
University of Victoria
Email: Court009@uvic.ca
Citation: Courtney, K. (2021). Modernizing Gender, Sex, and Sexual Orientation Terminology in Digital Health Systems- What Do Nurse Informaticists Need to Know? Canadian Journal of Nursing Informatics, 16(2). https://cjni.net/journal/?p=9066
Most existing digital health systems are unable to capture gender, sex and sexual orientation (GSSO) data beyond a single sex or gender data field with only male and female options. Without a standardized way to represent GSSO, sex and gender minority people remain largely invisible within Canadian healthcare systems. There is ongoing work to modernize GSSO terminology within digital health systems and the related information practices of clinicians and healthcare administrative staff. With a foot in the fields of informatics and nursing, nurse informaticists can guide informatics practice and policy change as well as influence SGM-inclusive patient and care changes as advocates within their organizations. The Canada Health Infoway Sex and Gender Working Group has developed a high-level action plan with seven transformative actions to modernize GSSO information practices in Canadian digital health systems. Of these actions, four are particularly relevant to the nurse informaticist: GSSO Terminology; Enabling Digital Health Systems; GSSO Policy/Practice Guidelines; and Education and Training. A summary of the Action Plan and relevant resources are provided. Nurse informaticists are invited to provide their expertise to the Canada Health Infoway Sex and Gender Working Group and the Michael Smith Foundation for Health Research REACH project.
A few years ago, a popular meme circulating the Internet pictured a group of people in surgical caps, masks and gowns hovering and looking concerned. The caption read “We’re here to save you. But we can’t find you in the computer.” Unfortunately, a number of people remain “invisible” within current Canadian digital health systems.
Experiences of stigma, discrimination and violence surrounding identity often lead sex and gender minority people (SGM) to avoid the healthcare system (Kcomt et al., 2020). SGM people experience health inequities such as higher rates of mortality, chronic disease, depression, suicide, and lower rates of preventive care (House of Commons; 42nd Parliament, 2019). Most existing digital health systems (DHS) are unable to capture gender, sex and sexual orientation (GSSO) data beyond a single sex or gender data field with only male and female options (Lau, Antonio, Davison, Queen, & Bryski, 2020). Without commonly agreed upon GSSO language or data standards, often clinicians record GSSO data in an unreliable ad hoc fashion in different parts of DHS (Lau, Antonio, Davison, Queen, & Devor, 2020). As current DHS systems do not provide a standardized way to represent GSSO, SGM people continue to remain largely invisible within Canadian healthcare systems.
Also missing are the associated inclusive information policies, processes, and clinician and staff training. As a result, SGM people may not have access to care that is affirming of their sex and gender and may not receive quality care (Logie et al., 2019). In response, innovative educational toolkits are being developed for nurses to improve cultural humility and understand the issues in accessing and receiving care for SGM patients (Luctkar-Flude et al., 2020).
There is ongoing work to modernize GSSO terminology within DHS and the related information collection, storage and utilization practices of clinicians and other healthcare staff. Implementing these changes will involve complex interventions targeting the structure and process of care delivery. GSSO terminology changes will result in changes to: the type of information collected; the information that is displayed in various systems, or how information may be shared and/or masked. Nurse informaticists are uniquely positioned to understand how the structure and sharing of information in DHS affects patient experiences within the healthcare system.
A Canada Health Infoway Sex and Gender Working Group (Infoway SGWG) was established in December 2019 to work with communities and organizations across Canada to examine how GSSO information should be defined, collected and used in Canadian DHS (Canada Health Infoway Sex and Gender Working Group, 2021). The result of that effort is a high-level action plan with seven transformative actions to modernize GSSO information practices in Canadian DHS that is summarized in Figure 1 below (Canada Health Infoway Sex and Gender Working Group Action Plan, 2021).
Figure 1: Action Plan – 7 Action Areas
Of these actions, four are particularly relevant to the nurse informaticist: GSSO Terminology; Enabling Digital Health Systems; GSSO Policy/Practice Guidelines; and Education and Training. The high-level action plan speaks to what should be done to improve GSSO documentation practices; nurse informaticists can contribute to the details on who, how, when and where.
Work in each of these areas is currently underway. Nurse informaticists can join the conversations through the Infoway SGWG and the Michael Smith Foundation for Health Research REACH project. The Infoway SGWG discusses the definition, collection, use and sharing of GSSO information in DHS and summarizes current practices, gaps and challenges. The REACH project shares and discusses how the Action Plan can address the needs of SGM patients and co-create implementation tools for modernized GSSO documentation practices.
The Infoway SGWG usually meets on the fourth Tuesday of each month (0900 PT/1200 ET). More information on how to join the group may be found at https://infocentral.infoway-inforoute.ca/en/collaboration/wg/sex-gender.
REACH project special topics meetings (Table 1) are usually held on the second Tuesday of each month (0900 PT/1200 ET). Registration for the meetings may be found here: https://uvic.zoom.us/meeting/register/tZ0ud–gqDMrE9z6A80wG8lIuEBBt7omvhVs
Table 1: REACH Special Topic Meeting Dates
REACH Special Topic | Date |
Digital Health Systems These meetings will explore issues of technical specifications, multi-level GSSO data and interoperability. Secondary use of data (ex. Research) will also be covered. | July 13, 2021 August 10, 2021 |
Policy & Practice These meetings will explore relevant policies regarding GSSO information within DHS at multiple levels (local, provincial/territorial, federal). These meetings will explore guidelines for information practices (collection, sharing, and use) for clinical and administrative healthcare staff. | September 14, 2021 October 12, 2021 |
Setting Specific Considerations These meetings will explore implementation considerations for specific types of health care settings – primary and acute/tertiary care. | November 9, 2021 Primary Care November 23, 2021 Acute & Tertiary Care |
REACH Project Update | December 14, 2021 |
Meeting notes, materials and discussion forums may be found through the Canada Health Infoway SGWG site. With a foot in the fields of informatics and nursing, nurse informaticists can guide informatics practice and policy change as well as influence SGM-inclusive patient and care changes as advocates within their organizations. Their expertise is vital in helping to shape the structure of digital health systems and appropriate information policies and practices to support culturally safer care and improve patient outcomes.
Canada Health Infoway Sex and Gender Working Group. (2021). https://infocentral.infoway-inforoute.ca/en/collaboration/wg/sex-gender
Canada Health Infoway Sex and Gender Working Group Action Plan. (2021). https://infocentral.infoway-inforoute.ca/en/resources/docs/sex-gender/sex-gender-action-plan
House of Commons; 42nd Parliament, 1st session. (2019). The health of LGBTQIA2 communities in Canada: report of the Standing Committee on Health. https://www.ourcommons.ca/DocumentViewer/en/42-1/HESA/report-28/
Kcomt, L., Gorey, K. M., Barrett, B. J., & McCabe, S. E. (2020). Healthcare avoidance due to anticipated discrimination among transgender people: A call to create trans-affirmative environments. SSM Population Health, 11, 100608. https://doi.org/10.1016/j.ssmph.2020.100608
Lau, F., Antonio, M., Davison, K., Queen, R., & Bryski, K. (2020). An Environmental Scan of Sex and Gender in Electronic Health Records: Analysis of Public Information Sources. Journal of Medical Internet Research, 22(11), e20050. https://doi.org/10.2196/20050
Lau, F., Antonio, M., Davison, K., Queen, R., & Devor, A. (2020). A rapid review of gender, sex, and sexual orientation documentation in electronic health records. Journal of the American Medical Informatics Association, 27(11), 1774-1783. https://doi.org/10.1093/jamia/ocaa158
Logie, C. H., Lys, C. L., Dias, L., Schott, N., Zouboules, M. R., MacNeill, N., & Mackay, K. (2019). “Automatic assumption of your gender, sexuality and sexual practices is also discrimination”: Exploring sexual healthcare experiences and recommendations among sexually and gender diverse persons in Arctic Canada. Health & Social Care in the Community, 27(5), 1204-1213. https://doi.org/10.1111/hsc.12757
Luctkar-Flude, M., Tyerman, J., Ziegler, E., Carroll, B., Shortall, C., Chumbley, L., & Tregunno, D. (2020). Developing a Sexual Orientation and Gender Identity Nursing Education Toolkit. The Journal of Continuing Education in Nursing, 51(9), 412-419. https://doi.org/doi:10.3928/00220124-20200812-06
Karen Courtney, RN, PhD
Karen Courtney is an Associate Professor and Graduate Advisor in the School of Health Information Science at the University of Victoria in Victoria, British Columbia. Dr. Courtney has a background in designing, conducting and evaluating community-based health information technology projects. These projects have community-dwelling individuals at the center and focus on meeting the self-identified needs and values of patients and family caregivers. Community-based participatory research pilot work with low-resource older adults in Pittsburgh neighbourhoods led to a 5-year Agency for Healthcare Research and Quality (US) funded study on community-based telehealth kiosks for health self-management by community-dwelling older adults. Her informatics research has been funded by the National Institutes of Health (US), National Science Foundation (US) and Canadian Partnership Against Cancer. She is currently the co-lead for a Michael Smith Foundation for Health Research REACH grant disseminating an action plan for GSSO terminology modernization in Electronic Health Records. She was awarded a National Library of Medicine Pre-Doctoral Fellowship while completing her PhD in Missouri.
The author wishes to thank the planning project team, Canada Health Infoway Sex and Gender Working Group members and individuals from participating organizations and communities for contributing to the co-creation of the action plan. This work was funded by the Canadian Institutes for Health Research Institute of Gender and Health.