Helping transgender patients navigate health care

While those in health care strive to "do no harm," unfortunately, for many people, the care they receive in a clinic or hospital may be different or inadequate to meet their needs.

Health care systems have been designed by and for a singular perspective or type of person, explains Rosemary Thomas, MPH (she/her), director of operations for the Penn Medicine Center for Health Equity Advancement and associate director for Penn's Program for LGBTQ Health.

"If your needs or experiences in the world are different than this perspective, accessing health care is at the minimum difficult and oftentimes perpetuates harm and inequity," Thomas shares.

Gender diverse—an umbrella term for those with transgender or non-cisgender identities—people may experience disparities when it comes to both health care (issues with access to and quality of care) and health (outcomes)—largely due to historic and current systemic exclusion, discrimination, and marginalization. These disparities are also compounded by structural racism in medicine and inequities in access based on income status.

For example, a large survey by Lambda Legal found that 70% of transgender respondents had experienced serious discrimination in health care, such as refusal of care, the use of harsh language, being treated differently, or in some cases, being physically rough. What's more, about 90% of respondents experienced one or more barriers to care. And in nearly every category, people of color and/or those with low income reported experiencing a higher proportion of discriminatory and sub-standard care.

One of the biggest barriers reported by gender diverse individuals is lack of access to care due to limited providers who are sufficiently knowledgeable on gender affirming medicine. Other barriers within health systems include gendered policies or practices (such as gender segregated changing rooms for outpatient procedures), limited abilities by electronic health records to collect affirming information about a patient's gender identity, and lack of routine education related to gender diversity.

Initiatives like Penn Medicine's Program for LGBTQ Health and the Transgender Patient Advocate Program aim to make the health care experience a smoother, less stressful time, while making access to care easier.

LZ Mathews (they/them), patient navigator for the LGBTQ Health Program and a transgender patient advocate, sees their role as one which helps ensure that each patient is being respected as a fuller person—from gender affirming care (a range of social, psychological, behavioral, and medical care which supports a person's gender identity) to making sure everyday care needs are met.

"As a patient navigator, I work primarily with trans and gender diverse clients to navigate the health system in ways that respect their connection to affirming care," explains Mathews, who is also a master of social work student with Penn's School of Social Policy & Practice. "At the same time, I'm trying to assist with improving access and removing barriers throughout the health system." These efforts include advocacy with providers and improving how information is accessed online, for example.

Advocating for Trans Patients

"The patient advocate program exists because many gender diverse folks have negative experiences accessing care and during the provision of care," says Thomas. "Health care systems are also complex and can be extremely challenging to navigate. While we are working toward a state where gender affirming care is routine, trying to identify a provider or practice that will affirm a person's identity while also providing the high quality care they are seeking can be difficult."

Most often, clients reach out to the Transgender Patient Advocate Program through an email or a phone call, while some are referred through their primary care physician, Mathews says. While most know what they need—such as gender affirming primary care, surgery, or mental health care—the patient navigator role allows Mathews to help take away the layers of difficulty that can exist when trying to identify and access care.

"Trans and gender diverse clients should not have to do this work alone," Mathews says. "It can be confusing and frustrating to try to get the right care for yourself, and I hope they reach out to our program as a resource."

The Program can help find appropriate providers, connect to other support services and navigators within the system, and communicate one's gender identity, name in use, and pronouns to staff and providers. In the long term, the goal of the program is to help an underserved and marginalized community connect to care and improve access and outcomes.

"However, to truly reach that long term goal, we need to radically transform our system. A program like this is a stop-gap on the path to that transformation," Thomas explains. "Ultimately, we would love to work ourselves out of a job and help our system evolve to a point where specific navigation or advocacy to avoid harm and inequities is not needed."

To that end, Mathews and colleagues try to make visible the imperfections of the system in order to make the system overall more inclusive and affirming for patients of all gender identities. They stress that feedback from patients is vital, as it allows them to try to learn and improve as much as possible.

Continuous Reflection and Improvement

While the patient navigator helps folks connect to clinical care, this role and the role of the program generally are to help transform a system into a system that is safe and affirming for all. "It's definitely an ongoing journey that we're on," said Thomas. "There is no real end point, but opportunities for continuous reflection and improvement."

For those in a health system looking to make their own improvements, Mathews recommends approaching things from a culture of humility. "This transformation is supported by seeking out more experiences and joy with LGBTQ communities beyond health care as well. If we make it just a clinical issue, we're not respecting the full lives of patients."

"People are at a variety of steps along the path towards improving the way they provide care, and we're here to help support them," Mathews says. "I think an important first step that everyone in health care can do right now is to take an inventory of their own practice."

For example, notice and look for all the ways that gender and sexuality already show up in conversations, documentation, physical facilities, procedures, and the practice's social environment. For instance, are dressing areas or gowns gendered? What examples are used in teaching or supervision? Do staff use binary gendered salutations such as Mr. or Ms. based on presumptions about gender identity, or do you ask how patients prefer to be addressed? And whose bodies, gender identities, sexual orientations, or family relationship structures appear in brochures, posters, or art in your office?

"This perspective-taking and the conversations that follow can help show just how systemic gender oppression and heterosexism are in health care," Mathews explains. "And they can also help us collectively renew our motivation for making change—something that is vitally needed right now and in the future."