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“Did You Bring Your Sister?”

How seemingly mundane changes can improve LGBTQ inclusion and reduce health disparities

By Heather Buschman, PhD   |   June 26, 2018

Janice and Tonya arrive at a health clinic with a baby for a six-month checkup and immunizations. James, working at the front desk, introduces himself to Janice and says, “Oh, did you bring your sister? How nice!”

Tonya and Janice both frown. Tonya says with exasperation, “Actually, I’m her wife and this is our baby.”

Ankita Kadakia, MD, presents this scenario to medical students, residents and other health care providers at UC San Diego Health in cultural competency training sessions that introduce clinicians to inclusive language they can use to welcome and engage patients from a variety of backgrounds.

Instead, Kadakia teaches, James should have said something like, “Welcome, Janice! What’s your child’s name? And who are the child’s parents?”

Same-sex married couple Rebekah and Shawna felt fortunate to have a positive experience when they recently welcomed their baby boy at Jacobs Medical Center at UC San Diego Health.

“When my wife, Shawna, delivered our baby, we really felt welcomed and at home,” Rebekah said. “Our ridiculous first-time-parent questions were just as ridiculous as everyone else’s, and we were taken just as seriously.”

As a patient, Shawna appreciated the continuity of her care throughout the entire family planning, pregnancy and delivery process. Whether she was receiving acupuncture, fertility support, OB/GYN services or midwifery, her ups and downs were all recorded in her electronic medical record, so she didn’t need to keep re-explaining her medical history and experiences to each new health care provider.

There were also simple things that the couple noticed and valued. In their birthing classes, for example, they found that the instructors didn’t talk about what “Dad” should be doing, but instead referred to “partners” and “non-birthing parents.”

“That might not be noticeable to some, but it is to us,” Rebekah said. “It matters that those doulas and midwives did that. Their investment in their patients was evident to us as we navigated our care.”

After their son was born, Rebekah was anxious about making sure they filled out the birth certificate correctly. “The California birth certificate can be complicated, and you basically only get one shot to get it right. I had a lot of questions, but the person in charge of helping us with it understood our concerns and knew exactly how the form should be filled out for a same-sex couple, without hesitation. It really helped set my mind at ease.”

An unmet medical need

SOGI glossery

Click on image to englarge.

They might seem like small differences, but it’s this atmosphere of inclusion — versus assumption — that can make a big difference to a person’s overall health, Kadakia said.

Lesbian, gay, bisexual, transgender and genderqueer (LGBTQ) patients have unique health needs and experiences. Yet the LGBTQ community is an underserved population largely invisible in most health care systems. This neglect has led to health disparities — in other words, LGBTQ people experience preventable differences in the burden of some diseases.

According to a 2013 review, people who identify as lesbian, gay or bisexual are more likely than heterosexuals to experience asthma, headaches, allergies, osteoarthritis and gastrointestinal problems. LGBTQ people are also more likely to experience depression and attempt suicide than other groups.

Differences in sexual behavior account for some of these disparities. For example, men who have sex with men are at higher risk for contracting HIV. But some less well recognized LGBTQ health disparities may be linked to social issues disproportionately experienced by this population, including bias, discrimination, bullying and difficulties accessing quality health care.

“Believe it or not, there are still kids being kicked out of their houses and traumatized for coming out as gay,” said Barbra Blake, CEO of the San Diego Equality Business Association (formerly the Greater San Diego Business Association) and a long-time UC San Diego Health patient who identifies as lesbian. “So you know there are lots of LGTBQ people who don’t always feel comfortable proactively seeking health care when they need it, and that may lead to poorer health.”

In a 2010 survey by national LGBTQ advocacy group Lambda Legal, many respondents reported poor experiences with health care, including being blamed for their own illnesses (11 percent LGB, 20 percent trans people), receiving rough treatment (5 percent LGB, 8 percent trans), hearing harsh language from care providers (11 percent LGB, 21 percent trans) and even outright refusal of care (8 percent LGB, 26 percent trans). Many of these experiences were twice as likely for LGBT people of color than white LGBT people.

Proud history

UC San Diego Health has a long history of caring for the LGBTQ community. The health system got its start in 1966 when the Regents of the University of California assumed the lease of the former County Hospital and begin operating what is now known as UC San Diego Medical Center as its primary clinical teaching facility. The hospital happened to be located in San Diego’s Hillcrest neighborhood, which even then was already known for its large and active LGBTQ community. UC San Diego Health’s employee and patient populations have always reflected the neighborhood’s diversity.

In 1982, UC San Diego Health established the Owen Clinic, one of the first HIV/AIDS research and treatment centers in the U.S. The clinic continues to serve as an international model for HIV care and patient empowerment.

Proud to be part of the local LGBTQ community, various UC San Diego groups have participated in the annual Pride Parade in Hillcrest for many years. In 2011, UC San Diego Health officially sponsored the parade, and continues to be its health care sponsor each year. By 2012, the health system began receiving annual accolades from the Human Rights Campaign (HRC) Foundation, the educational arm of the nation’s largest LGBTQ civil rights organization.

In 2015, Marie Webber, the chief administrative officer who oversees Women & Infants, Psychiatry and Ophthalmology at UC San Diego Health, helped launch what has become an annual building lighting at Hillcrest with rainbow colors and a Pride flag-raising ceremony to recognize LGBTQ Pride Month.

“As far as I know, we’re the only health system on the West Coast to show its support for the LGBTQ in such an official, public way,” Webber said.

These rainbows are more than colorful window dressing. Grassroots efforts to make meaningful improvements to LGBTQ inclusion were made throughout UC San Diego Health for many years. In 2016, CEO Patty Maysent formalized and expanded these efforts. When she looked to her executive leadership team for a champion to oversee a system-wide effort to improve and measure LGBTQ cultural and clinical competency, Webber took up the call.

Now, as co-chair of a group known as LGBTQ Health Leaders, Webber sees herself as a connector, bringing together all of the people working on LGBTQ issues separately across both the clinical enterprise (UC San Diego Health) and the academic side (UC San Diego School of Medicine). She helps physicians and staff develop their efforts, share best practices and expand things that work well to other areas of the organization.

Maysent was particularly proud in 2017 and 2018 when UC San Diego Health was named a “Leader in LGBTQ Healthcare Equality” by the HRC Foundation, earning the distinction with a perfect “100” score on an evaluation of patient services and support, non-discrimination policies, staff training, employee benefits and community engagement.

“We firmly believe we cannot provide good care to the communities we serve without being culturally competent and inclusive of their rights and needs as patients,” Maysent said. “It’s important that we take the time to learn what matters to our patients, and that they feel comfortable coming to us so we can provide the best care regardless of who they are, how they live their lives or what they believe.”

Making meaningful changes

Meanwhile, Kadakia and a team of representatives from a number of services across UC San Diego Health, including nursing, obstetrics/gynecology, surgery, psychiatry, emergency medicine and primary care, formed a Sexual Orientation and Gender Identity (SOGI) Committee. They have been working for nearly two years to make meaningful changes throughout the health system that improve the health care experience for LGBTQ patients.

LGBTQ cultural competency graphic

Click on image to englarge.

The committee is training staff in LGBTQ cultural competency, empowering them to integrate inclusive language into everyday provider-patient interactions and making changes — however small they may seem — to improve inclusion. They also plan to assess access to, satisfaction with and quality of care for this patient population. Eventually, they hope to be able to document the delivery of appropriate health services and measure reductions in some health disparities.

In one of the team’s early wins, they worked with UC San Diego’s Facilities Department to introduce gender neutral bathrooms throughout the health system and School of Medicine. That’s one less worry for an LGBTQ person coming in to receive medical care, Kadakia said. If a person is gender non-conforming, it can sometimes be difficult to decide what bathroom to choose. They have to reflect on their gender expression for that day, and worry about how they will be perceived.

Earlier this year, Amy Sitapati, MD, primary care physician and chief medical information officer for Population Health at UC San Diego Health, led an effort to improve inclusion in UC San Diego Health’s electronic medical records. Now, patients are empowered to document their own sexual orientation and gender identity. The team trained physicians, nurses and other health care providers how to ask for that information, as well as preferred names and pronouns, and how to explain why they are collecting the information. Providing this information is optional, and patients can also enter it themselves from the privacy of their own homes at Clinicians now also have a place to record information about sexual organs, hormone use and other key details in a patient’s electronic medical record. The information is private, and can only be accessed by a patient’s medical team and staff involved in quality improvement.

“From the moment a new patient first fills out an intake form, our interactions set trust, a sense of comfort and welcome,” Sitapati said.

These changes also help health care providers do their jobs better.

“Once we have the right information, we can ask the right kinds of questions to better care for our patients,” said Kadakia, who treats HIV and AIDS patients at the Owen Clinic.

For example, if Kadakia knows a man is gay, she knows he is at increased risk for certain cancers and she can make sure he is being appropriately screened for those diseases. She’ll also be sure to discuss prevention measures with him. If a patient is comfortable revealing that he is a transgender man, Kadakia will know she needs to ask questions about potential hormone use so she can determine if the patient could be experiencing complications from those medications. She’ll know to discuss prostate health with a transgender woman. She might also be more likely to assess the patient’s risk for depression than she would if the patient identified with his gender assigned at birth.

There is still more to be done. The SOGI Committee is currently working to remove the gender indicator from patient ID bracelets and add a line for preferred name in addition to legal name. And while all UC San Diego Health physicians are “LGBT-Friendly” (meaning they treat LGBTQ patients the same as any other), the LGBTQ Health Leaders and SOGI committee are now training physicians to be “LGBTQ-Competent,” meaning they are culturally competent and experienced with specialized types of health care, such as transgender surgeries.

Webber and team have also been working with Blake to help physicians meet the criteria required to be included in San Diego Equality Business Association’s LGBTQ Health & Wellness Referral Network. A handful of UC San Diego Health physicians have completed the requirements so far, and Blake is excited to expand this resource for the benefit of the LGBTQ community.

New mom Rebekah said she understands that not every health care provider across a large health system is going to get everything right, every time.

“But I appreciate that UC San Diego Health always seeks our feedback … it’s evident that they are trying to get it right, and that means a lot.”

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