Lesbian, gay, bisexual, transgender and queer (LGBTQ) patients who are also racial and ethnic minorities suffer significant health disparities, while facing more complicated challenges than white LGBTQ or racial and ethnic minority patients alone. These identities can operate independently or together to influence the patient’s relationship with health care providers and their decisions about care.
LGBTQ patients of color also have a higher risk for poor health outcomes than white LGBTQ patients, but unfortunately, most clinicians aren’t prepared to address their needs. Little research exists on this population’s preferences for doctor-patient communication and shared decision-making, a process in which doctors and patients work together to make decisions about complex medical issues and develop treatment plans based on what the patient wants. This leaves few resources for providers to care for patients at the intersection of multiple LGBTQ and racial or ethnic minority statuses.
“Racial/ethnic, sexual orientation, and gender identity minority status are all marginalized social identities, so they act in concert to further marginalize people who are trying to navigate the health care system,” said Monica Peek, MD, MPH, Associate Professor of Medicine at the University of Chicago Medicine.
“One of the things that we’re trying to understand better is how people make choices about health care when they are standing at the intersection of multiple social groups that have historically experienced societal discrimination and disparities in health care delivery,” she said.
Acknowledging the disparities in care for LGBTQ patients of color, a team of physicians and public health researchers from UChicago embarked on a project called Your Voice! Your Health! to build a foundation for health providers to better understand the unique needs of these patients, and facilitate a process of shared decision making between doctors and patients to improve health outcomes.
“The ultimate goal is to improve the health of LGBTQ patients of color by developing tools and resources to help clinicians and these patients engage in better shared decision-making,” said Marshall Chin, MD, MPH, Associate Chief and Director of Research of the Section of General Internal Medicine.
It’s a multifaceted challenge with an equally complex solution—or rather, a series of solutions– that go beyond more training for providers to encompass organizational culture, educational tools and even the physical design of health care facilities. In a series of papers published in the Journal of General Internal Medicine, Peek, Chin, and their colleagues lay a foundation for these solutions.
The intersection of multiple identities and perspectives
At the heart of the project is the idea of “intersectionality,” that multiple layers of social classifications—be it race, ethnicity, age, gender, sexual orientation—influence an individual’s identity and experiences in the world. Each person can hold several identities simultaneously that change in importance depending on time, place or circumstance. In one of the new studies, Peek and her colleagues describe how the interaction of these identities can influence health care decisions. For example, an African-American gay man may be less likely to share his sexual orientation with a white health provider, which shuts down an opportunity to receive crucial preventive care.
Peek and her team reviewed existing literature on shared decision-making in African-American LGBTQ populations, and developed a conceptual model to show how social identity of both patients and physicians—and perceptions of those identities by others—can influence shared decision-making. In the end, establishing trust boils down to how well a physician acknowledges her own identities in relation to those of her patients.
“It’s been fascinating to see what study participants are saying about the whole issue of trust,” said Fanny Lopez, MPP, a co-author who has observed interviews and focus groups conducted by the Morten Group as part of nine qualitative sub-studies included in the Your Voice! Your Health! project. “It might be a black gay man saying his provider is white, but it doesn’t matter because she is sensitive. It’s a combination of many things that make a patient feel comfortable with a totally discordant provider.”
Tools to make the right decisions
Once that trust is established, a physician still needs the right tools to help a patient navigate difficult health decisions. Decision aids are forms of patient education like one-on-one counseling, multimedia tools and self-guided materials that physicians can use to help facilitate shared decision-making. In a second paper though, Aviva Nathan, MPH, and colleagues found disappointingly little research when they reviewed the existing literature.
After reviewing nearly 600 studies, they found just 18 that studied the effectiveness of decision aids with a participant group of more than 50 percent racial, ethnic, sexual or gender minority. Fourteen of the 18 focused on cancer screening, and only one of those studied a decision aid for a sexual minority population.
Despite the limited size and scope of the literature, the decision aids did improve decision quality and doctor-patient communication. Nathan says this means decision aids still have potential for LGBTQ patients of color.
“There are a lot of opportunities for decision aids to be tested and used in these double minority groups, because they have a lot of issues that could be really helped by using tools that facilitate conversations with their doctors,” she said.
One of those issues could be the decision by those at risk of getting HIV to begin pre-exposure prophylaxis (PrEP), or taking medication to prevent infection. The treatment has great potential to lower the risk of HIV, but it means taking a pill every day and possible unknown, long-term side effects. A decision aid for PrEP could help patients weigh these pros and cons, as long as health researchers begin to account for the unique clinical needs of multiple minority patients.
“The problem with minorities not being represented in these decision aids is that their clinical issues may not be well represented,” said Elbert Huang, MD, MPH, FACP, a co-author of the decision aid review. “But there’s no reason to believe that a decision aid should not work in ethnic minorities or in gender or sexual orientation minority populations.”
Organizational change from within
Trust between a doctor and patient is crucial and appropriate decision aids are helpful, but they can be more effective in the right context. A health care provider’s organizational structure, culture and even physical space can play a big role in a patient’s willingness to engage in shared decision-making. In a third paper, the UChicago team discusses ways a health care organization can shape its operations to support this process with LGBTQ patients of color.
Some of the recommendations are good practices for improving the experience of any group of patients, such as streamlining patient flow through the clinic or helping patients fill out decision aid materials before they meet with providers. Others may seem to be overlooked in regards to how they shape the patient experience. Does the electronic medical record system have the right categories to record data about sexual or gender identity? Does the clinic space have visual cues like gender-neutral signs on single-use restrooms to reassure patients that it’s a safe space?
Sensitivity to the preferences of patients with multiple minority identities is also necessary for all staff members who interact with patients, not just providers. Achieving the appropriate level of cultural competency can come through training and education, but the researchers say it also starts by building an understanding, inclusive work environment within the organization.
“Part of the culture change is how we treat each other,” said Scott Cook, PhD, one of the authors. “How do we work with each other as staff? Is there mutual respect? Is there an inclusive environment where everybody’s input is considered important and critical to the team? If that’s not part of the culture, then that’s going to immediately impact patient care as well.”
A model institution
The University of Chicago is already several years into an initiative to improve diversity and cultural awareness across campus, from academic departments to front-line patient care. Chin says that once such thinking is embedded into every level of the organization, it flows naturally to patient care as well.
“The University of Chicago is on its way to being a model institution regarding this,” said Chin. “It’s a matter of the will of everyone from senior management to the front lines, saying that this is important and we want to do it, and then being there for support and resources to be able to do the work. We’re on the right path.”