What is the State of Gender, Sex and Sexual Orientation Documentation in Canadian Electronic Health Records? (Part-1 of a 2-Part Series)

Nov 12, 2020
Francis Lau, Marcy Antonio, Kelly Davison, Roz Queen, Aaron Devor
University of Victoria

On behalf of the CIHR Institute of Sex and Gender Planning Project Team, Infoway Sex and Gender Working Group Members and Participating Stakeholders

Why this is an issue
People who identify as sexual and gender minorities (SGM) in Canada experience numerous health inequities. Many health organizations lack inclusive policies for SGM, and health care staff often lack the knowledge and confidence to provide affirming and appropriate care. Most existing electronic health record (EHR) 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. SGM-inclusive GSSO language and data standards do not exist, making it often necessary for health care staff to record GSSO data in an ad-hoc fashion in different parts of the EHRs and paper charts. These factors have made SGM largely invisible in EHRs, and by extension, within digital health ecosystems. This is a major problem on many levels — we know little about people who are SGM, their health needs, which care settings they access, whether or not they receive appropriate care, and their health outcomes. What we do know from the literature, based largely on primary research and not EHR data, is that SGM populations have higher rates of premature mortality, chronic diseases, depression and suicide, and barriers to preventive health screening and care. Many SGM are stigmatized, experience discrimination, and even violence in the healthcare system. SGM people often avoid seeking care when they need it because they do not find health care encounters to be sufficiently safe, accepting, inclusive or affirming [1].

Current and emerging practices
We conducted rapid reviews of academic and grey literature (35 journal papers and 23 reports) published in the last six years to examine current health documentation practices and to assist us as we formulate ideas as to how we might modernize GSSO information practices in EHR systems [1]. Our findings overwhelmingly highlighted the importance of health care providers having SGM cultural competence when interacting with SGM patients, and that high-quality care is underpinned by SGM-competent GSSO-informational practices. Care practices must be grounded in organizational policies that support inclusive and affirming care environments. Health care staff should be SGM-competent and need to use appropriate and accurate language to create welcoming environments for SGM.  There are also safety considerations when identifying and matching SGM patients with their unique care needs. An example is the proper use of one’s name and pronouns during encounters to avoid outing, misgendering and deadnaming. Another example is the use of appropriate clinical rules that signal appropriate radiation shielding for diagnostic tests, informing clinical decisions with appropriate laboratory test reference ranges, and improving prevention through targeted screening measures.

We also conducted an environmental scan of sex and gender definitions in existing Canadian EHR systems and international standard specifications based on publicly available web information sources [2]. They covered 52 databases and 55 data standards from 12 Canadian entities and 10 standards communities. There are wide variations in how sex and gender are defined and implemented in Canadian EHR systems and international health information standards. There is inconsistency in how and GSSO data elements are codified within code systems and value sets used to represent sex and gender concepts across EHRs. For instance, sex, administrative sex, sex assigned at birth, and patient’s sex are all data names that refer to a person’s anatomy and physiology, but different value options are used, including indeterminate, intersex and undifferentiated when one’s sex is neither stereotypically female nor male. Some these value options need to be modernized as our societal understanding of SGM and GSSO concepts progresses. Some terms currently in use may be offensive to some SGM individuals, and shouldn’t be forced choices in health care structures. Outdated value options raise concerns about the role of EHRs in supporting the provision of culturally competent, safe, and affirmative health care because clinicians interact with these terms on their EHR interfaces many times per day, and have little choice but to document using the terms provided. Offensive value options play a role in the perpetuation of SGM health inequities.

While sex and gender definitions in most existing EHR systems and data standards included in our environmental scan have different data names and limited value options, there are also notable efforts toward making EHRs and data standards more inclusive. For instance, the Canadian Institute for Health Information has proposed four sex at birth options of male, female, indeterminate, and unknown; and five gender options of female, male, gender diverse, unknown, and not applicable [3]. Statistics Canada has introduced three sex options of male, female, and intersex; and three gender options of male, female, and gender diverse [4]. It has also introduced cisgender and transgender categories with options of cisgender man, cisgender woman, transgender man, transgender woman, and transgender n.e.c. (not exclusively categorized). In the United States, the Office of the National Coordinator of Health Information Technology Interoperability Standard Advisory has defined specific value sets for sex at birth, gender identity, and sexual orientation in SNOMED CT, LOINC and HL7 V3 codes [5]. The latest effort is the HL7 Gender Harmony project to propose new data elements and value sets for gender identity, recorded sex and gender, sex for clinical use, name to use, and third person pronouns [6], which will go to HL7 ballot soon.

What is being planned?
To explore ways to improve GSSO documentation in Canadian EHRs, we applied for and received a 1-year planning grant from the Canadian Institutes of Health Research (CIHR) Institute of Gender and Health. The purpose of the planning project is to establish a coalition of stakeholders to develop an implementation strategy and a grant application to modernize GSSO information practices in Canadian EHR systems [4]. In this context, we define information practices as the principles, approaches, policies, and process of defining, organizing, sharing, and using personal health information, such as GSSO-related information.

In Part-2 of this series, planned for February of 2021, we will describe the output of this planning project, which is a proposed action plan to improve GSSO information practices in Canadian EHRs. A copy of the draft action plan that is currently under review is available on the Infoway Sex and Gender Working Group website [7]. There is a lot of work ahead, but we have the opportunity in Canada to lead the way towards a more equitable future for SGM people. A future where everyone can have access to safe, high-quality, and affirmative health care, and ensures equal health outcomes for all.

Glossary

Cisgender refers to people who accept as correct the sex and gender assigned to them at birth.
Deadnaming refers to calling a transgender person by their birth name when they have changed their name as part of their gender transition
Electronic Health Record (EHR) systems refer to collections of an individual’s lifetime health history and care records in the health eco-system. These records may reside in different places such as hospitals, nursing homes, and doctors’ offices (in Canada, patient records in doctors’ offices are called electronic medical records, or EMRs). They also include such input sources as laboratory and pharmacy systems that collect these records, and administrative/clinical databases that house the extracted records for health system use reporting and research.
Gender nonbinary refers to people who identify themselves as other than entirely a man or entirely a woman. They may identify as partially a man and partially a woman, or identify as sometimes a man and sometimes a woman, or identify as some gender other than a man or woman, or as not having a gender at all. They most commonly use the pronouns they/them/their instead of he/him/his or she/her/hers. Some nonbinary people consider themselves to be trans or transgender; some do not because they consider transgender to be part of the gender binary. The shorthand NB (pronounced “enby”) is sometimes used as a descriptor for nonbinary people.
Gender, Sex and Sexual Orientation (GSSO) data or information is a broad term that covers such concepts as sex assigned at birth, gender identity, sexual orientation, chosen/affirmed/social names and pronouns.
GSSO definitions refer to the GSSO data standards that include data field names, descriptions, coding schemes, and value options.
GSSO information practices refer to the principles, approaches, policies and processes of defining, collecting, organizing, sharing and using GSSO data. The term GSSO documentation is also used to describe the process of recording GSSO data in patients’ EHRs, as part of health care encounters.
LGBTQIA2S+ is the abbreviation for lesbian, gay, bisexual, trans, queer, intersex, asexual, Two-Spirit, and other gender and sexual minority people.
Misgendering is referring to (someone, especially a transgender person) using a word, especially a pronoun or form of address that does not correctly reflect the gender with which they identify.
Outing refers to revealing a person’s sexual and gender identities before they are ready to disclose that information
Sexual and gender minorities, or SGM, is amongst the different terms and abbreviations used to describe people whose gender identity or sexual orientation is either not cisgender or not heterosexual. They include transgender, gender nonbinary, and other LGBTQIA2S+ people.
Transgender refers to people whose gender identities differ from what is typically expected of the sex and gender to which they were assigned at birth. 

References

 

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