The healthcare experience of transgender people in Arkansas is the subject of what some laud as an unprecedented study being launched by the Arkansas Transgender Equality Coalition (ArTEC) in partnership with the UAMS College of Public Health. The community engagement based research project, funded by a $15,000 federal grant, was announced by ArTEC Tuesday.
The organization’s executive director Andrea Zekis said the award from the Patient-Centered Outcomes Research Institute is a new direction at both the federal and state level.
“There are very few studies like this that happen around the country so it’s kind of groundbreaking as an idea. This is a great opportunity to bring researchers together with the trans community and have some control and some say when it comes to their healthcare,” said Zekis.
“The is the first time they’ve actually involved trans people in the process at looking at their own healthcare needs. This is very unique to PCORI [Patient-Centered Outcomes Research Institute] as well as to Arkansas.”
The Director of the UAMS Office of Community Based Public Health, Dr. Kate Stewart, said in a press release by ArTEC that the project is consistent with approaches addressing disparities in other groups of particular peoples.
“We have been using participatory approaches to community engaged research for a number of years, especially with African American community-based organization focused on addressing racial health disparities…This award focuses on the transgender community which also experiences significant disparities in health and healthcare. We are excited to be partnering with the ArTEC and we encourage the transgender community to be engaged throughout the research process from deciding what we are going to research, informing how we will go about designing the study, what language we will use, and how we will interpret and disseminate findings.”
Zekis contended the involvement of the trans community is vital if the state’s healthcare system wants to improve delivery of care.
“Trans people are more likely to have to educate their physicians on their own healthcare. If trans people are having to educate people about their own healthcare then maybe they should have a say in some of the research that’s being done on their healthcare,” said Zekis. “
"Instead of trans people having to be asked about their research issues by people who are not transgender we involved transgender people in the process of doing research. So transgender people will be working side by side with researchers in the state.”
Barriers to care exist not just because of unknowledgeable physicians and insurance carriers reluctant to provide coverage, according to Zekis. ArTEC’s director said healthcare obstacles run the gamut from transitional needs to basic care such as wellness exams.
“Because of issues of either finding a physician that’s comfortable working with trans people, or fear of discrimination it makes those things that might normally be treatable, could make them much more serious issues if care is delayed.”
A research working group is forming in May with regional discussions to follow this summer.