Modernizing Gender, Sex, and Sexual Orientation Terminology in Digital Health Systems- What Do Nurse Informaticists Need to Know?

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

Abstract

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.

Introduction

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. 

Action Plan Summary

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

1. Vision and Goal: Envisage an equity- and SGM-oriented health ecosystem that embraces diversity and aligns with other SGM-related initiatives. The goal is to have inclusive organizational policies, culturally safer staff and enabled DHS with modernized GSSO information practices to help achieve equitable health care access, experiences, and outcomes for SGM.
2. Engagement and Partnerships: Engage organizations and communities to modernize GSSO information practices in DHS that support equity-oriented health care and meet SGM needs. Explore opportunities to partner with agencies beyond the health ecosystem that collect and use GSSO data to ensure consistency, leverage resources, optimize efforts and maximize impact.
3. GSSO Terminology: Establish a precise, inclusive, appropriate and multi-level GSSO terminology with standardized data definitions, coding schemes and value sets that support affirming patient care, provide complete and accurate health system and research uses. The terminology should be inclusive of all SGM identities and adaptable as the GSSO language evolves over time.
4. Enabling Digital Health Systems: Adopt a common set of DHS functions that support the collection and use of standardized GSSO data, SGM-oriented clinical care guidelines, data-driven analytics, health system performance monitoring, and health evidence generation. There should be common specifications on data fields, terminology, interfaces, security and privacy, data quality, decision support rules, outputs and technology support.
5. GSSO Policy/Practice Guidance: Integrate and tailor GSSO data collection and use including secondary purposes within all organizational structures, policies, practices, governance, use cases and workflow processes in order to address specific SGM needs. Examples of policies include explicit guidance on why, what and when GSSO data should be collected, who should collect the data, and safeguards in place for the data, and privacy of the individuals asked to disclose the information.
6. Education and Training: Educate and train health care staff to enhance their capacity to provide culturally competent and safer care, and DHS vendors, system implementers, policy-makers and researchers to ensure safeguards are in place to protect these data. Inform patients on the need for GSSO data collection and protections for safe access and use.
7. Central Hub for Coordination: Establish a central hub to liaise, guide, assist and monitor the progress of this plan over time. Examples of hub activities include hosting seminars to share best practices, refining the GSSO terminology to reflect current trends, discussing GSSO documentation approaches and implications, and sharing relevant tools and resources.

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. 

Ways to Share Your Expertise

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.

References

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, 1^st 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

Author Biography

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.

Acknowledgement

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.