Transgender Health Data Collection | UDaily


Fit matters. You know this if you’ve ever walked in shoes that were too small, put on someone else’s glasses, or heard your child’s name mispronounced over a loudspeaker.

Fit is also very important in health. Doctors, nurses and other medical professionals need good data – complete, accurate and timely data – to provide optimal care for patients, each of whom has very different backgrounds and needs.

But patient information is not always accurate or complete and this can be particularly problematic when trying to understand the needs of specific populations, such as lesbian, gay, bisexual, transgender or queer (LGBTQ) people.

An estimated 7.1% of Americans identify as LGBTQ, according to a Gallup poll released earlier this year. The poll, conducted in 2021, shows an increase from the 5.6% reported in a 2020 poll. Of those who identified as LGBTQ, 10% said they were transgender, meaning their gender identity did not match not the sex they were assigned at birth. They make up just under 1% of the overall US population, Gallup said.

Now, a study by researchers from the University of Delaware and ChristianaCare shows how incorrect or incomplete data can be a barrier to ensuring equitable health care for transgender patients and other members of the LGBTQ community. .

The study, published by the journal Transgender healthreflects information gathered from interviews with 37 hospital registrars at Christiana Hospital in New Castle County, Delaware.

The interviews – conducted in 2017, then transcribed and analyzed in 2020 – show how the attitudes and practices of hospital registrars affected the collection of gender identity data, how they responded to systemic barriers and what they did when they encountered discrepancies in the documentation.

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 Equity and Community Health Research (iREACH); and Scott Siegel, licensed psychologist, director of population health research at iREACH and adjunct professor at UD.

“Many institutions do not collect data regarding sexual orientation and gender identity,” Waad said. “However, we know that our LGBTQ communities face disproportionate stigma in the healthcare space compared to their cisgender-heterosexual counterparts. The only reason we know this is because others have made data collection a priority. Simply put, if we don’t collect data, we are unable to identify or address discrepancies. »

Sometimes the barriers to data collection are quite basic. Researchers found, for example, that hospital registrars encountered technical problems when trying to enter patient information into computer systems. The forms only allowed two options for gender identity: male or female. There was no way to provide information about a patient who identified as transgender or otherwise non-binary.

“Even though some registrars had misconceptions about gender identity, they wanted to request this information in a respectful way,” Brooks said. “However, electronic health records often fail to capture patients’ non-binary gender identities. We then risk marginalizing patients and recording inaccurate information.

Brooks said she’s been part of previous studies of how hospital registrars collect race, ethnicity and language data.

“We found that registrars were sometimes unsure of why we’re asking for this or worried about offending patients,” she said. “We heard their concerns and adapted our training accordingly.

“Having demographic data is essential so that we can track potential disparities and provide culturally appropriate care to all of our patients. We needed to find out if registrars faced similar challenges in collecting gender identity. »

With only two sex choices offered in the computer program, registrars had to decide whether to report sex based on physical anatomy, the patient’s answer to the question, or based on information recorded on a document. legal, such as a driver’s license. This type of uncertainty produces confusion, distorted information and corrupt data.

“Getting into healthcare information technology is as complicated as it gets,” Siegel said. “The lab has one system, radiology may have a different system, and external vendors may have a completely different system.”

Insurance companies have their own forms. Pharmacies have their own forms. It’s hard to coordinate all of this and bring it up to date.

“Without systems capable of integrating transgender information into patient demographics, it is difficult for registrars to accurately and respectfully collect patient information, even when doing their best,” Siegel said. “We recognize that updating our electronic health record systems will take a lot of work, but we need to get the work done.”

ChristianaCare leaders have supported efforts to work with information technology systems and external vendors to develop better systems and processes and this work continues.

“ChristianaCare is committed to moving forward with more respectful and inclusive collection of patient sexual orientation/gender identity data, in addition to other important pieces of information for the healthcare environment. health – such as preferred name, pronouns and possibly organ and surgical inventories,” Waad said. “We are currently – and have been for several years – working with our electronic health records provider to raise awareness of these gaps and the need for change.”

Mehta, the first author of the paper, said she was chosen to work on this project with her mentors, Brooks and Waad, by the Delaware INBRE program (IDeA Network of Biomedical Research Excellence). Delaware INBRE supports undergraduate research training opportunities, among other activities, with funding from the National Institute of General Medical Sciences of the National Institutes of Health. Siegel is the Delaware INBRE Institutional Lead at ChristianaCare.

“This paves the way for electronic health systems to allow hospitals to collect inclusive patient information such as gender identity, sexual orientation, pronouns and more,” she said. “Using this demographic data, we can track health disparities among LGBTQ groups and create evidence-based interventions to reduce these inequalities.”

Siegel said Mehta made important contributions to the work and development of the journal article.

“Shivani, to me, represents the best of the next generation,” he said. “I hope they’re a lot more open-minded and I’ve found they understand better that gender is less binary. Everyone can identify in different ways. We can feel compassion for the damage that rigid thought patterns can cause.” For her, it was a natural fit and she did a great job.

The researchers noted several limitations of the study. It included a small number of participants who represented a hospital. The interviews analyzed today are five years old, and the attitudes and experiences of these registrars may have changed in the meantime.

But, Siegel said, the goal of ensuring equitable health care remains firm.

“We take that to heart,” he said. “The hard work is to make all of these processes and systems work…. From the moment someone walks through the door, we need our processes to support a positive and empowering experience. »


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