Going to the doctor is seldom a fun process. Patients are often and understandably nervous about what their medical professionals will have to say about their overall health. Beyond that, the power and prestige afforded to doctors can leave patients feeling unable to articulate their own concerns about prescribed treatment.
"When we sometimes have recommendations about plans of care, unless we're careful, we aren't necessarily tailoring them to peoples' experiences, preferences, and needs," said Dr. Monica Peek, an assistant professor and clinical-care physician at the University of Chicago ( UChicago ). This tailoring of treatment based on a doctor's advice and a patient's reality is known as shared decision-making, and is the focus of a new study focused on LGBT people of color.
"Your Voice! Your Health!" is a collaboration between the Morten Group and the University of Chicago investigating experiences of shared-decision making between healthcare practitioners and LGBT people of color in the Chicagoland region. "Too often, LGBT persons, in particular LGBT persons of color, have not received the type of shared decision making that is the best that can be done," said Dr. Marshall Chin, the project's principal investigator. "So the goal of this research project is to try to understand what LGBT persons of color want in communication with their healthcare providers."
Shared-decision making is important because it leads to the best possible outcomes for patients, according to Chin. "For patients to have the best possible health, they need to work close together with their healthcare provider," he said. "There's got to be trust, there's got to be open communication, there needs to be a sharing of decision-making where patients are actively involved." Too often, he added, LGBT people of color have not received this type of shared-decision making.
In order to identify and recruit participants, Chin and his colleagues called in the Morten Group. Founded by Mary Morten, who formerly served as Mayor William M. Daley's liaison to the LGBT community, the Morten Group previously conducted the 2011 LGBT Needs Assessment, identifying the concerns of Chicagoland's LGBT population. "We learned through the needs assessment that healthcare was the number one issue," Morten said. The Morten Group has already had four different launches throughout the city, which is important to reaching disparate communities. "I think we still deal with this idea that all the gay folks are on the North Side," she said, "which is of course not the case."
Finding a diverse pool of participants is the Morten Group's role, and also vital to the success of the study, according to Peek. "Vulnerable and margianalized populations tend to experience the same kind of discrimination in healthcare that they experience elsewhere in society," she said. "We are really hoping to make sure that everyone who wants to have their voice heard has the opportunity," even people "who may not be seeing a doctor right now because they're afraid to enter the healthcare system."
"We take this responsibility seriously that perhaps the most important part of the project is giving voice to people who too often have not been asked to tell their stories," Chin added.
Included in that group are trans people of color, who often "experience outright, significant discrimination," according to Dr. Scott Cook, a clinical psychologist serving as a co-investigator on the study. "Sometimes it's not outright discrimination," he said, but rather clinicians "not knowing how to navigate the culture." This can make it hard for trans people trying to communicate their needs with healthcare providers, who may be "willing to do their best and want to try to do the right thing but maybe just don't know how and don't know how to have those conversations." In that way, Cook said, this study could benefit not just patients but medical professionals in better treating LGBT people of color.
Still, the research team understands that potential participants may be apprehensive approaching them. However, Morten said her group's participation can help alleviate some of those concerns. It is "helpful to have someone on the ground who people know, people trust," she said. "I think that overall helps in thinking about the cultural competency and sensitivities that I think are really important as we carry out this work." Morten points out that data collection on people of color has often been misrepresented and used against them, a fact she is "certainly very sensitive to, and I think the team has been sensitive to." She stresses that the answers are confidential and kept under "lock and key."
The study focuses on several areasranging from intimate partner violence to HIV/PrEP, obesity and diabetic screeningand will encompass both focus groups and individual interviews. Those wishing to participate should contact the Morten Group at 773-422-2591 or firstname.lastname@example.org .
"The more participation we receive from the community, the better prepared we will be to create communication tools that can best engage and empower that same community in healthcare settings," Morten said in a press release.