For LGBTQ+ Patients With Heart Failure, EMR Details Often Absent

Even when there’s room to input gender and sexuality—info that might combat care disparities—clinicians typically fail to do so.

For LGBTQ+ Patients With Heart Failure, EMR Details Often Absent

PHILADELPHIA, PA—Specifics on gender, sexuality, and sexual orientation (GSSO) are often absent in electronic medical records (EMRs) of patients with heart failure (HF) despite opportunities to collect these data, one hospital’s experience shows.

Colleen Schinderle, BA (Eastern Virginia Medical School, Norfolk, VA), who presented the findings at the American Heart Association (AHA) 2023 Scientific Sessions, emphasized that better documentation could both improve knowledge and be a step toward reducing barriers to care for LGBTQ+ individuals.

“It is important to recognize that up to 25% of LGBTQ patients avoid medical care for the fear of mistreatment and stigmatization for their sexual orientation and/or gender identity,” she told attendees at the rapid-fire oral abstract session. “In patients with heart failure specifically, the actual number of individuals who identify as LGBTQ is unknown due to the lack of this kind of widespread data collection, although we know that among the LGBTQ community, risk factors are highly prevalent.”

Moreover, said Schinderle, this demographic information is necessary to appropriately treat patients and to give them a chance at the best outcomes. As reported by TCTMD, the LGBTQ+ population as a whole tends to be at high risk for cardiovascular disease thanks to risk factors like hypertension, smoking, and diabetes.

Last summer, their hospital system, Sentara Healthcare, added the ability to collect information on sexual orientation, gender identity, and pronouns to its Epic EMR software. Schinderle, along with co-authors John Thurber, BA, MS (Eastern Virginia Medical School), and Amin Yehya, MD (Eastern Virginia Medical School and Sentara Heart Hospital, Norfolk, VA), decided to take a closer look at whether this new feature was being used.

“We set out to create a quality-improvement project in which we would look at the percentage of individuals who identified as LGBTQ among patients recently discharged for acute HF decompensation, as well as investigate the amount of times that this was being recorded,” said Schinderle.

Yehya, in an interview with TCTMD, stressed that LGBTQ+ patients can be reluctant to seek medical attention due to fear about bias or discrimination. “That’s very common,” he said. These barriers “can keep them from receiving the care they deserve.”

After their hospital system’s Epic upgrade to include GSSO, “I wanted to see how well we are doing, because we all want to have this safe, accepting environment, which we all preach for and want to happen,” said Yehya, principal investigator of the study and research mentor to Schinderle and Thurber. “Are we walking the walk?”

With LGBTQ+ people representing a sizeable portion of the US population—around 7%—“we want to address all these health disparities,” he said, adding that their results are “wake-up call” to do better.

Sex, Gender, Sexual Orientation, and Pronouns

Schinderle, Thurber, and Yehya did a retrospective chart review from August 14, 2022, when the GSSO data points could be entered into the EMR, through February 10, 2023. Their target population was all adult patients with a primary diagnosis of HF at discharge.

Of 449 patients whose records were analyzed for GSSO, all had their sex recorded: 52.1% female and 47.9% male. However, 18.5% had no gender identity recorded (43.2% were listed as female and 38.3% as male). Sexual orientation was not cited for 86.2% and was marked as straight, lesbian/gay, or unknown for 12.7%, 0.7%, and 0.2%, respectively. For pronouns, 87.8% did not have any listed, while 6.0% specified he/him/his and 5.8% she/her/hers.

“To us, this indicates that hospitals and staff still have a long way to go in terms of including this data when gathering demographics from patients,” Schinderle said. “Whether it be due to feelings of awkwardness, lack of education about the importance, or personal bias, neglecting to collect this data increases health disparities for LGBTQ individuals as well as decreases their engagement with healthcare.”

At their hospital, staff and providers now complete mandatory training modules about how to ask questions about gender and sexuality, and how to feel comfortable doing so. Additionally, brochures have been placed in all outpatient clinics and hospital waiting rooms that explain—to both patients and clinicians—why this demographic information is valuable to collect. The research team hopes to do a follow-up study in March 2024 to see if data collection has improved in the 6 months following that education initiative.

A lot of it is about changing the culture of the hospital and the people who work there, and creating that inclusivity that patients feel when they walk in. Colleen Schinderle

Schinderle, speaking with TCTMD, said, “A lot of it is about changing the culture of the hospital and the people who work there, and creating that inclusivity that patients feel when they walk in.”

A big reason why clinicians may not have been thorough in gathering data so far is that they don’t realize how much it matters, she noted. On the patient side, “I personally have found that most people are willing to talk about this kind of thing, especially if they feel it can make a difference in their care and if you can make them feel safe sharing that information. . . . Most people are excited [to discover] you even want to talk about this,” said Schinderle. “It’s really been an overwhelmingly positive response.”

Building trust with the community that they can expect privacy and safety is a key step, said Yehya, pointing out that medical records are protected by federal law through HIPAA.

In a 2022 paper, published in the Journal of Cardiac Failure, he recounts the story of patient who, after a heart transplantation, began repeatedly rescheduling her follow-up appointments. The transplant coordinator, thanks to their good rapport, was able to convince her to return.

The patient, a transgender woman, “then shared that she had been going through a ‘big change’ in her life,” having started estrogen therapy as part of transitioning, Yehya writes. “She disclosed that she had been avoiding her follow-up appointments in fear of judgment, or even worse, exclusion from the clinic. It was a very emotional day for not only the patient, but for all members of the care team in that room as well, who witnessed firsthand the potential downstream effects of bias and health inequities on patients.”

  • Schinderle C. Exploring data collection on sexual orientation, gender identity, and pronouns in heart failure patients: a call for improved documentation and barrier identification. Presented at: AHA 2023. November 12, 2023. Philadelphia, PA.