BY LAURA MERRYFIELD AND PRANAV REDDY
In late December 2012, the American Psychiatric Association published the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), the authoritative document for diagnosing mental health in the United States. It contained a dramatic shift in language, decades in the making: the term “gender identity disorder” was replaced with “gender dysphoria” to reduce the stigma associated with the word “disorder.” This change affected an estimated 1.4 million adults who identify as transgender in the United States and is just one example of many strides that the medical community has taken to better serve the transgender population in recent years.
Transgender individuals are those who experience a different gender identity from their assigned sex at birth, while cisgender individuals are those whose gender identity matches sex at birth. Gender identity is an individual’s perception of their gender, which may be the same or different from their sex assigned at birth; this identity could be male, female, a blend of both, or neither. This is distinct from sexual orientation, and the unique needs of transgender populations may relate to but differ from those of lesbian, gay, and bisexual cisgender populations. Because the percentage of individuals identifying as transgender has doubled in the last decade and many transgender individuals seek gender-affirming medical care like hormone and surgical therapy, the medical field has seen a growth in demand for these services.,
Through the changes to DSM-5, the American Psychiatric Association provided tacit recognition of the active harm to transgender individuals that has occurred due to the pathologization of gender difference by the medical field throughout history. Transgender people have experienced discrimination in the health care system, a dearth of inclusive policies, and implicit and explicit bias of providers. Thankfully, recent legal, cultural, and medical shifts have started to draw more visibility to the experience of gender non-conforming and trans people. Yet outside of the medical field, transgender populations continue to face many societal challenges, including much higher rates of unemployment, homelessness, and harassment compared with the US population as a whole. Therefore, systems leaders looking to advance transgender inclusion in other fields, such as education, housing, and the workplace, can look to lessons learned from medical practitioners at the vanguard of these discussions.
Progress in Health Care
Over the last 20 years, significant progress has been made on the body of knowledge available about the access and outcomes of health care for transgender populations. One reason for this is that key public health organizations collect more information about transgender health than ever before, due to pressure from LGBTQ advocacy groups for health agencies to increase measurement of sexual orientation or gender identity (SO/GI) data. For example, since 2013, the Centers for Disease Control and Prevention’s National Health Interview Survey—the most comprehensive survey to monitor population-level health—has included two novel questions on SO/GI. Separately, the National Center for Transgender Equality released a survey in 2016 that revealed key barriers to care for trans patients: 25 percent of respondents reported facing problems with insurance related to their gender status, and 33 percent disclosed that they had experienced at least one negative experience, such as harassment or refusal of treatment in medical settings. The majority had accessed transition-related care.
The University of California, Davis Health System was the first US academic health center to collect SO/GI information within the electronic health record (EHR)—a change in process that was far from simple. According to a report detailing the effort, “We found the task to be more complex than simply engineering new data fields and training staff to ask questions. It required making changes in institutional culture.” Initially, the taskforce met resistance from providers who felt uncomfortable collecting information about gender identity. Key to overcoming resistance was grounding the procedural change in strategic messaging about the purpose for collecting this information: to reduce health disparities among LGBTQ patients. Successful implementation required the buy-in of senior leadership, a holistic assessment of stakeholder experiences, and in-depth provider training. Importantly, data about gender identity was collected from both patients and providers, in order to allow for more than one catch point.
Since UC-Davis’s trailblazing initiative, efforts to increase and improve SO/GI data collection have expanded around the country. Initial successes and external guidance have helped to shepherd other health systems toward this change, particularly through the Office of the National Coordinator for Health Information Technology’s requirement of this data collection for certain certifications of EHRs. In addition, research has shown that aversion to collecting SO/GI data based on assumptions of patient discomfort may be misguided. Studies of patient and provider perceptions have found that, “although 78% to 80% of providers thought patients would be offended by, or refuse to answer, SO/GI questions, only 3% to 11% of patients reported such responses.”
Yet there are other forums where the accurate collection of data about gender identity remains a challenge. For instance, the collection of gender identity data within EHRs is not automatically integrated with insurance, billing, and allowable procedures. Moreover, many medical procedures and laboratory tests have gender associations, which can lead to a result that is not relevant for a particular patient (e.g., a hormonal reading outside of standard levels for a given gender) or the denial of a necessary procedure because of a system-coded gender mismatch. This suggests that as data collection better evolves to reflect patient needs at the clinical level, improvements and flexibility in associated or “back end” systems will be required as well.
Cultural Competence & Institutional Leadership
A 2015 survey revealed that 20 percent of transgender patients avoid health care due to a fear of discrimination and that 31 percent had no regular doctor. Trans patients have historically experienced transphobia and misguided assumptions when interacting with the health care system, with mistreatment taking the forms of misgendering (using language and actions that do not match an individual’s gender identity), hostility, and even violence. To help reduce the occurrence of such maltreatment, many health care systems across the country have integrated LGBTQ cultural-competency training for providers in order to improve their knowledge, skills, and attitudes.
In particular, medical and nursing educational institutions have increasingly offered LGBTQ care modules. In 2011, two-thirds of medical schools reported LGBTQ-specific content in the curriculum, with a median amount of five hours. This was an increase from 50 percent of all medical schools in 1998. Many medical schools also provide clinical simulations with LGBTQ patients, including training on taking an inclusive sexual history. Still, gaps remain once physicians are in practice, and finding knowledgeable educators is a barrier. Additionally, simply educating to increase knowledge and attain competence is not enough, as transphobia can also be a barrier to knowledge.
One model of excellence is Fenway Health, an LGBTQ community health clinic in Boston that reports 110,000 patient visits annually. The innovations that originated at Fenway include a modified informed-consent model without unnecessary barriers to hormone therapy, community assessment, and materials to develop frontline workers’ cultural competency (e.g., guides on how to provide effective counseling as a provider to transgender patients). As a model for gender-affirmative clinical care, Fenway Health demonstrates the importance of creating a clinical environment that fosters patient-provider relationships with dignity at their core.
The last two decades have seen large-scale changes in federal standards, regulations, and norms surrounding transgender-related health care, thanks in large part to lobbying by LGBTQ advocacy organizations. In 2000, for example, the US Department of Health and Human Services officially called for equitable treatment on the basis of gender and gender identity, which was influenced by a 1999 Institute of Medicine report on lesbian health. The report was the first in a series of population-based research reports that attempted to investigate the true burden of disease among “special populations.”
Recent years have also seen important changes in insurance regulation and legal protections afforded to transgender and gender non-conforming individuals accessing health care. Under the Patient Protection and Affordable Care Act (PPACA), insurers are not allowed to consider health status when setting rates and are prohibited from discriminating on the basis of gender identity. This clause was put to a test in 2017, when a ten-year-old transgender boy committed suicide after being repeatedly misgendered during care for suicidal ideation. In the case that followed, Prescott v. Rady Children’s Hospital-San Diego, the court ruled that the language of the PPACA upheld the discrimination claim. Although the Trump administration has attempted to undermine the ruling, other aspects of the PPACA’s protections remain, such as Medicaid nondiscrimination language in state Medicaid expansion. Due to changes in the insurance regulatory landscape, private payers, Medicare, and Medicaid are increasingly covering essential health care services like gender transitions.
Opportunities for Progress across Policy Environments
The role of health care in serving all patients and understanding all bodies creates unique urgency for addressing the needs of the transgender population. Yet many of the lessons from this field have broader applicability to a variety of policy settings as an example of an entire industry making significant institutional change. Systems leaders can look to health care’s achievements in the areas of data collection and infrastructure, cultural competence and leadership, and adherence to national standards as models for better serving transgender populations.
Just as guidelines for appropriate ways to collect gender identity and sexual orientation exist for medical providers, independent organizations and researchers have begun to develop best practices for surveying transgender communities. Social-service agencies and others directly working with transgender clients may find clinical recommendations geared toward patient providers directly applicable, such as during intake, behavior assessment, and the data protocols for collecting transgender and non-binary gender identities. Just as data collection in EHRs has led to a need to improve staff training and linkage to other records and databases, any institution changing its practices will need to holistically assess the needs and gaps in implementation. Data cannot be seen as simply an information technology project. It requires the involvement of leadership and staff at all levels.
Paramount to data collection about gender identity is a shared understanding of purpose and privacy. Notably, the rationale behind data collection may be very different outside of the medical field, and institutional leadership should make careful decisions about whether collecting information on transgender identity is truly necessary. In a compilation of interviews with transgender patients and providers serving transgender individuals in community health centers in Oregon, patients often did not wish to disclose their transgender status if not explicitly related to their treatment. They simply wished to have their gender identity recognized and respected by staff and their physician. Providers felt that knowing sex assigned at birth was necessary to provide adequate care, as in being able to appropriately screen a patient with a cervix for cervical cancer, for example.
In a non-medical setting, information about assigned gender at birth may have much less relevance to service delivery. Guidance issued by the American Library Association asks libraries to consider whether collecting patron gender identity is needed at all and recommends conducting a community-needs assessment to better understand local needs. To protect privacy and fully acknowledge individuals, an agency or institution should carefully consider whether tracking transgender identity is necessary and take time to understand the experiences and preferences of those it serves.
Shared definitions and integration of data systems can also improve efficiency in the public sector. The majority of states and the federal Social Security Administration administer processes to change gender markers on official identification documents, with several states now offering the opportunity to change or issue a driver’s license, ID card, or birth certificate with a third gender marker. As more states offer this option, challenges may arise in other systems. For example, a social-service agency may be unprepared to record information from a non-binary individual or unsure how to place them within a program that is only linked to a binary gender. Just as in the medical field, a broader view of gender has implications across systems and flexibility will be key for all stakeholders to continue to adapt.
In implementing programmatic and policy changes, non-medical institutions can also learn from the work of cultural competence in the medical field. This includes efforts to study and improve gender diversity in hiring, involving transgender individuals and clients in planning efforts and using existing training resources for service providers. Many of the guidelines published by health advocacy and research organizations to serve transgender patients can be easily adapted to a broader audience.
One key aspect of policy implementation within medicine has been the continuous evaluation of success of each health system, especially as compared to industry-accepted national standards and metrics. Although the federal government provides little guidance about trans-inclusive policies, independent research and advocacy organizations like the Transgender Law Center, the Human Rights Campaign, and Lambda Legal have published broad guides to workplace inclusion, support for K–12 students, and more. In addition, the Human Rights Campaign rates cities and companies on LGBTQ inclusion through its Equality Indexes. This type of indexing can allow the work of transgender inclusion to be measured and compared across the country. Within industry sectors, there is ripe opportunity for information and tools to be shared, as they have been in the medical field.
As younger adults increasingly identify as transgender and gender non-conforming and as patient centers continue to offer medical transition services to a greater number of patients, the need for a broader range of institutions to serve, understand, and work in collaboration with this population will grow as well. Shifts toward trans-inclusion in the world of health care, though still a work in progress, should serve as a guide for understanding data, culture, and people. Integrating gender diversity into these systems—rather than merely accommodating it—will be key to reducing health and economic disparities among transgender people.
Laura Merryfield is a master in public policy student at the John F. Kennedy School of Government at Harvard University and co-chair of the LGBTQ Caucus. Laura comes from a community organizing and nonprofit background in immigrant rights, education, and the social determinants of health.
Pranav Reddy is a joint candidate at the John F. Kennedy School of Government at Harvard University and the Warren Alpert Medical School of Brown University. Pranav has worked on issues at the intersection of health and human rights and will be training in obstetrics and gynecology after graduation.
Edited by: Amy Couture
Photo by: Wikimedia Commons
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 “‘Transgender’ is an umbrella term used to describe people whose gender identity, one’s inner sense of being male, female, or something else, differs from their assigned or presumed sex at birth. Transgender patients generally are admitted to hospitals for the same types of care as other patients, although transgender patients may also enter hospitals for transition-related health care services. To ‘transition’ means to shift over time from occupying the social role of one gender to that of another. This term also describes the medical procedures that sometimes accompany that shift. Transition may or may not include taking hormones, having surgeries, or changing identity documents to reflect one’s gender identity.” Creating Equal Access to Quality Health Care for Transgender Patients: Transgender-Affirming Hospital Policies (New York: Lambda Legal, 2016), 2.
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