Transgender individuals are less likely to have had a primary care visit in the last year than cisgender individuals despite having more chronic conditions. A study from Regenstrief Institute, Indiana University School of Medicine and Eskenazi Health explores the healthcare experiences of transgender patients and uncovered three major barriers this group faces in accessing healthcare.
A cisgender person is someone whose sense of personal identity and gender corresponds with their sex assigned at birth.
To better understand the challenges, perceptions and feelings of transgender patients seeking care, the research team interviewed 21 adult patients in the Gender Health Program at Eskenazi Health in Indianapolis, a comprehensive healthcare clinic for transgender and gender-diverse adults. The interviews revealed transgender patients in Indiana face barriers related to:
- A lack of willing or knowledgeable providers
- Long wait times for appointments
“When we spoke to these patients, many described difficulties in being able to find a provider that could or would treat them. Some traveled for hours just so they could be seen in an affirming setting with providers knowledgeable about transgender health,” said first author Joy L. Lee, PhD, M.S., research scientist at Regenstrief Institute and assistant professor of medicine at IU School of Medicine. “These interviews speak to the need for more primary care providers who can treat transgender patients and highlight the need to create healthcare spaces that feel safe for transgender individuals.”
Transgender patient experiences
One patient told the research team,
“[The transgender clinic physician] is more than willing to be my primary care doctor. His only concern is that he’s a hundred miles away, quite literally. …I’m a little worried as to where I’m going to find primary care.”
Other patients reported being uncomfortable in care settings outside of the transgender clinic. “It didn’t feel safe — not that anybody was mean or anything. It’s just that you get in there and you’re all nervous because now you have to explain who you are to somebody. I know they’re professionals and I’m [probably] not the first trans person they ever saw. But you never know. Sometimes it’s hard.”
Many reported that providers actually looked to the patient for guidance on transgender specific care. “All I’ve ever done is had to educate them,” one patient said. “Educate doctors. Educate pharmacists.”
Overall, patients reported very positive experiences in the transgender clinic. One shared the experience,
“[My doctor] doesn’t make me feel like I’m a man coming into the transgender clinic. He makes me feel like I’m wanted. He talks to me as if I’m a woman.… It just feels like a regular doctor’s appointment [where] I’m going to go get checked up.”
However, travel and wait times for transgender care clinic appointments can be prohibitive for patients.
“A supportive care environment, whether it is a specialty clinic or a primary care office, is so crucial for these individuals who have many unique needs,” said Janine M. Fogel, M.D., a study author, the medical director of the Gender Health Program at Eskenazi Health and assistant professor of clinical family medicine and clinical medicine at IU School of Medicine. “This study is noteworthy because it gives us insight into the experiences of transgender patients in the Midwest, highlighting experiences of rural patients.”
“Our research indicates that transgender patients are having their needs partially met by the comprehensive care model, but there is a long way to go to make quality care accessible to everyone,” said senior author Marianne Matthias, PhD, Regenstrief research scientist and associate research professor of medicine at IU School of Medicine. “These findings set the stage to develop future interventions aimed at expanding the capacity of providers and health systems to address the healthcare needs of transgender patients.”
“I Don’t Want to Spend the Rest of my Life Only Going to a Gender Wellness Clinic”: Healthcare Experiences of Patients of a Comprehensive Transgender Clinic” is published online ahead of print in the Journal of General Internal Medicine.
In addition to Drs. Lee, Matthias and Fogel, the other authors are Monica Huffman, B.S., of Regenstrief, Nicholas A. Rattray, PhD, of Regenstrief, IU School of Medicine, and the VA Health Services Research and Development Center for Health Information and Communication (VA HSR&D CHIC); Jennifer L. Carnahan, M.D., MPH, of Regenstrief and IU School of Medicine; Dennis Fortenberry, M.D., M.S., of IU School of Medicine and Michael Weiner, M.D., MPH, of Regenstrief, IU School of Medicine and VA HSR&D CHIC.
About Joy L. Lee, PhD, M.S.
In addition to her role as a research scientist at Regenstrief Institute, Joy L. Lee, PhD, M.S., is an assistant professor of medicine at Indiana University School of Medicine.
About Marianne S. Matthias, PhD
In addition to her role as a research scientist at Regenstrief, Marianne S. Matthias, PhD, is a core investigator for the U.S. Department of Veterans Affairs Health Services Research and Development Center for Health Information and Communication, Richard L. Roudebush VA Medical Center. She is also an associate research professor of medicine at Indiana University School of Medicine.
About Janine M. Fogel, M.D.
In addition to medical director of the Gender Health Program at Eskenazi Health, Janine M. Fogel, M.D., is a bicentennial professor and an assistant professor of clinical family medicine and clinical medicine at Indiana University School of Medicine.
About Regenstrief Institute
Founded in 1969 in Indianapolis, the Regenstrief Institute is a local, national and global leader dedicated to a world where better information empowers people to end disease and realize true health. A key research partner to Indiana University, Regenstrief and its research scientists are responsible for a growing number of major healthcare innovations and studies. Examples range from the development of global health information technology standards that enable the use and interoperability of electronic health records to improving patient-physician communications, to creating models of care that inform practice and improve the lives of patients around the globe.
Sam Regenstrief, a nationally successful entrepreneur from Connersville, Indiana, founded the institute with the goal of making healthcare more efficient and accessible for everyone. His vision continues to guide the institute’s research mission.
About IU School of Medicine
IU School of Medicine is the largest medical school in the U.S. and is annually ranked among the top medical schools in the nation by U.S. News & World Report. The school offers high-quality medical education, access to leading medical research and rich campus life in nine Indiana cities, including rural and urban locations consistently recognized for livability.
About Eskenazi Health
For more than 160 years, Eskenazi Health has provided high-quality, cost-effective, patient-centered health care to Central Indiana. Accredited by The Joint Commission, nationally recognized programs include a Level I trauma center, regional burn center, comprehensive senior care program, women’s and children’s services, teen and adolescent care programs, health and wellness center, Sandra Eskenazi Mental Health Center, and a network of primary care sites located throughout the neighborhoods of Indianapolis. In partnership with the Regenstrief Institute, Eskenazi Health conducts groundbreaking work that informs health information technology around the globe. As the public hospital division of the Health & Hospital Corporation of Marion County (HHC), Eskenazi Health partners with the Indiana University School of Medicine whose physicians provide a comprehensive range of primary and specialty care services.
About the Gender Health Program at Eskenazi Health
The Eskenazi Health Gender Health Program provides access to a network of primary care and specialty services for older adolescent and adult transgender patients of all gender identities. The first of its kind in Indiana, the program combines primary care and other comprehensive services with surgical options. Established in March 2016, it includes many skilled team members trained in the WPATH (World Professional Association for Transgender Health) standards of care. From primary care physicians and surgeons, to nurses and caring support staff, all are dedicated to serving the transgender community with excellence.