Adequacy is important. You know this if you’ve ever walked in shoes that are too small, worn someone else’s prescription glasses, or heard your child’s name mispronounced over the loudspeaker.
Adequacy is important in the medical field, too. Doctors, nurses and other healthcare providers need quality information – complete, accurate, timely – to provide the right care to patients, who each arrive with different backgrounds and needs.
But patient information is not always accurate or complete and this can be very difficult when trying to understand the needs of other people, such as those who are gay, lesbian, bisexual, transgender or queer (LGBTQ).
About 7.1% of Americans identify as LGBTQ, according to a Gallup poll released earlier this year. The survey, conducted in 2021, shows an increase from the 5.6% reported in 2020. Of those who identified as LGBTQ, 10% said they were transgender, meaning that their gender does not match the sex they were assigned at birth. They represent less than 1% of the American population, Gallup said.
Now a study conducted by researchers from the University of Delaware and ChristianaCare shows how inaccurate or incomplete data can be a barrier to ensuring equal health care for transgender patients and others in the LGBTQ community.
This study, published by the journal Transgender Healthpresents data collected from a survey of 37 hospital registrants at Christiana Hospital in New Castle County, Delaware.
The interviews – conducted in 2017, recorded and analyzed in 2020 – show how the attitudes and behaviors of hospital registrars affected the collection of gender data, how they responded to system barriers and what they did when faced with inconsistencies in records.
Four researchers worked on the study, including UD Honors College senior Shivani Mehta, who is majoring in neuroscience and plans to attend Sidney Kimmel Medical College; Alex Waad, program manager in ChristianaCare’s Office of Health Equity and doctoral student at UD; Madeline Brooks of Christiana Care’s Institute for Research on Equity and Community Health (iREACH); and Scott Siegel, licensed psychologist, director of Population Health Research within iREACH and associate professor at UD.
“Many organizations do not collect data on sex and sexuality,” Waad said. “However, we know that our LGBTQ community faces more discrimination in the healthcare environment compared to their heterosexual counterparts. The only reason we know this is because some have made data collection a priority. In short, if we don’t collect data , we cannot perceive or resolve differences.”
Sometimes limitations to data collection are necessary. Researchers found, for example, that hospital registrars encountered technical difficulties when trying to enter patient information into computers. These forms allow only two ways of identifying gender. There was no way to provide information to a patient who identified as transgender or not.
“Although some applicants had misconceptions about their gender identity, they wanted to respectfully request this information,” Brooks said. “However, electronic health records often fail to report non-binary patients. We then run the risk of underestimating patients and recording incorrect information.”
Brooks said he has been involved in previous studies in which hospital registrars collect information on race, ethnicity and language.
“We found that registrants sometimes didn’t know why we were asking for this or feared it would upset patients,” he said. We heard their concerns and changed our curriculum to accommodate them.
“It is important to have population statistics so that we can follow the possible differences and provide the right care to all our patients. We needed to know if the registrants are facing similar problems in collecting gender information.”
With only two gender options provided in the computer program, registrants had to decide whether to report gender based on physical characteristics, the patient’s answer to the question or rely on information written on a legal document, such as a driver’s license. This kind of uncertainty leads to confusion, distorted information and confusion.
“Getting into health information technology is as difficult as it gets,” Siegel said. “The lab has a system, radiology may have a different system and outside vendors may have very different systems.”
Insurance companies have their own forms. Pharmacies have their own characteristics. Organizing all of that and putting it together is difficult.
“Without systems that can receive transgender information in the patient population, it is difficult for registries to accurately and respectfully collect patient information, even if they try,” said Siegel. “We know it’s going to be a big job to rebuild our medical system, but we have to do it.”
Leaders at ChristianaCare have supported efforts to work with information technology systems and external vendors to create better systems and processes and the work continues.
“ChristianaCare is committed to moving forward with the respectful collection and integration of information about sex/gender, in addition to other important medical information – such as a loved one’s name, its meaning and ultimately equipment and surgeries,” Waad. he said. “We are currently working – and have been for several years – with electronic equipment suppliers to inform them of these opportunities and the need to change.”
Mehta, the first author on the paper, said he was selected to do the work by his advisors, Brooks and Waad, and the Delaware INBRE (IDeA Network of Biomedical Research Excellence) program. Delaware INBRE supports graduate training opportunities, among other activities, with funding from the National Institute of General Medical Sciences at the National Institutes of Health. Siegel is the director of Delaware INBRE at ChristianaCare.
“It runs electronic systems to allow hospitals to capture patient information such as gender, sex, names and more,” he said. “Using these statistics, we can track health disparities between LGBTQ groups and develop evidence-based strategies to reduce these disparities.”
Siegel said Mehta contributed greatly to the work and development of the magazine’s story.
“Shivani, to me, represents the best of the next generation,” he said. “I hope that he is very open and I found that he understands that gender is very limited. Everyone can perceive it in different ways. We can feel sympathy for the harm that strict ways of thinking can cause. For him, it was a natural fit and he did a good job.”
Researchers noted several limitations of the study. It included a small number representing one hospital. The questions being analyzed are now five years old and the opinions and experiences of the applicants may change over time.
But, Siegel said, the goal is to ensure that health care remains strong.
He said: “We see this in our hearts. “The hard work is making all these processes and systems work…. From the moment someone walks in the door, we need our processes to support positive and positive experiences.”