According to the Williams Institute, there are approximately 1.4 million transgender adults in the United States or 0.6 percent of the population. This is nearly twice the prior estimate developed in 2011, which was based on statewide census data collected in California and Massachusetts. The actual number should not be as much of a surprise as the effort it took to enumerate this population. We do not have an accurate count of transgender individuals because we do not collect gender identity. Gender identity is not included as a demographic in any comprehensive federal healthcare data sources including the U.S. census, the American Health Interview Survey, the Medicare/ Medicaid data sets or the Healthcare Cost and Utilization Project (HCUP). The Williams Institute data was gleaned from the Centers for Disease Control’s Behavioral Risk Factor Surveillance System (BRFSS). In most data bases, transgender people are counted by their sex assigned at birth. A transgender man would fall under the female demographic and a transgender woman would fall under the male demographic. Healthcare needs of transgender adults are inclusive of their biology but also different, particularly if they are taking hormone therapy. The inability to elucidate this population by their gender identity effectively renders them invisible. We do not count them, so they don’t count.
Effects of Transgender Invisibility
You may wonder what effect transgender invisibility has on the care and safety of these individuals. From a macro perspective, population health management, defined as “the health outcomes of a group of individuals, including the distribution of such outcomes within the group” (KIndig and Stoddart, 2003), is not possible. Population health management is operationalized through the application of data analytics. Groups are proscribed by selecting certain characteristics such as age, sex, diagnosis and insurance status. Questions are developed and queries are run. The goal of population health is to redress and reduce health disparities by identifying causal factors – sometimes referred to as social determinants of health. Population health management is impossible for transgender people because they are not counted.
At the healthcare system level, transgender service planning is difficult. Without the ability to identify the number of transgender individuals in a service area, the services they are accessing and those they have to leave the system to obtain, it is difficult to determine if resources would be best applied to transgender care or to other services that are easier to codify. How many primary care providers with clinical competence in transgender care are necessary for a specific service area? How may reproductive endocrinologists and surgeons can the service area support? What is the current health insurance status of the transgender population and what treatments and procedures are covered? Without the ability to identify transgender individuals in the data sets, planning is extremely difficult.
Lack of Clinical Evidence
Transgender patient care is hampered by a lack of clinical evidence because we can’t perform retrospective studies when we can’t identify transgender patients in the data sets. This leaves us with descriptive studies conducted via questionnaires and prospective studies, which take time. Despite the difficulties, guidelines have been developed such as the World Professional Association for Transgender Health Standards of Care and the UCSF Center of Excellence for Transgender Health Guidelines for the Primary and Gender-Affirming Care of Transgender and Gender Nonbinary People. These help facilitate basic transgender care including puberty suppression and hormone therapy as well as chest reconstructive and gender reassignment procedures. These guidelines include the best and most current evidence for basic transgender care, but they do not provide answers for questions regarding the long-term health effects of hormone therapy or whether patients who have gender reassignment procedures have better qualities of life than those who do not. We are just beginning to evaluate the effects of hormone replacement therapy on chronic conditions such as diabetes and heart disease. We don’t know how hormone therapy affects cancer and other serious illnesses. When is it necessary to interrupt hormone therapy and how much of a say should the transgender patient have in that decision? The pool of evidence for transgender healthcare is very shallow. Transgender healthcare equity is dependent upon our ability to identify them in the data. It is incumbent upon us, as health professionals, to collect and report gender identity so these and other important questions can be investigated.
Commit to Getting Sex and Gender Identity Complete and Correct in EHRs
The U.S. Department of Health and Human Services has defined Standards and Interoperability Guidelines for Electronic Health Records that include both sex and gender identity (2017). Both are necessary to assure safe and inclusive care as well as to appropriately delineate the population.
Sex, defined by the Standards and Interoperability Guidance as sex assigned at birth, should be collected as follows:
- M (“Male”)
- F (“Female”)
- UNK (“Unknown”)
The third option is necessary to appropriately classify individuals with indeterminate sex at birth, also known as disorders of sexual development or intersex (approximately 1 in 1,500 – 2,000 births). Organizations should not change the value for sex when transgender individuals have their gender marker changed on identification documents but rather maintain the sex marker as sex assigned at birth and use the gender identity field to address changes in gender marker. Transgender patients should be helped to understand the need for both sex assigned at birth and gender identity in the record. If the differences in definition and uses of these demographics are not carefully explained, the patient may feel anger and perceive discrimination.
Gender identity should be collected and reflected as follows:
- Female-to-Male (FTM)/Transgender Male/Trans Man
- Male-to-Female (MTF)/Transgender Female/Trans Woman
- Genderqueer, neither exclusively male nor female
- Additional gender category or other, please specify
- Choose not to disclose
Plan for Gender Identity Collection
Organizations must carefully plan for collecting gender identity. Transgender people will answer the question when it is posed in a professional and sensitive manner. The process for each facility and departments within a facility will be different. A multidisciplinary approach is necessary to address the human and technology issues and concerns. Staff training is essential. Organizations may want to consider developing scripts to address some of the more common scenarios such as asking about preferred name and pronoun in addition to gender identity. Questions should be asked in a way that does not “out” the individuals to others in the waiting or treatment area. The Fenway Institute has some excellent resources. It won’t be easy, but it’s time to address transgender invisibility.
National LGBT Health Education Center (2016). Collecting Sexual Orientation and Gender Identity Data in Electronic Health Records. Fenway Health Institute. https://www.lgbthealtheducation.org/wp-content/uploads/Collecting-Sexual-Orientation-and-Gender-Identity-Data-in-EHRs-2016.pdf
Flores, A. R.; Herman, J.L.; Gates, G. J.; Brown, T. N. T. (2016). How Many Adults Identity as Transgender in the United States? The Williams Institute. https://williamsinstitute.law.ucla.edu/wp-content/uploads/How-Many-Adults-Identify-as-Transgender-in-the-United-States.pdf. Accessed 12/20/17.
US Department of Health and Human Service Office of the National Coordinator for Health IT. (2017). 2017 Interoperability Standards Advisory. Page 22. https://www.healthit.gov/sites/default/files/2017_isa_reference_edition-final.pdf. Accessed 12/20/17.
Kindig, D. & Stoddart, G. (2003). “What is population health?” American Journal of Public Health. 93 (3): 380–3.
Sue Boisvert, BSN, MHSA, CPHRM, FASHRM, is a senior risk specialist for Coverys. Her primary responsibilities include providing on-site assessments and risk management services to insured physicians, hospitals and facilities in Maine, Massachusetts and New Hampshire. Boisvert is a registered nurse with a Master of Health Services Administration from St. Joseph’s College of Maine and a Bachelor of Science in Nursing from the University of Connecticut.