University of Chicago and Morten Group, LLC work together to encourage LGBTQ people of color to speak up about their healthcare with the research study "Your Voice! Your Health!" ( YVYH )
In 2014, University of Chicago Medicine and Biological Sciences received a grant from the Agency for Healthcare Research and Quality ( AHRQ ).
Scott Cook, Ph.D.—the deputy director of YVYH and the Robert Wood Johnson Foundation national program "Finding Answers: Disparities Research for Change"—explained AHRQ wanted to fund a project addressing racial and ethnic disparities in healthcare and health outcomes, specifically through process called, "shared decision making." Shared decision making, Cook said, is a way of saying "having very good, high quality communication between providers and patients as they're making healthcare decisions and addressing healthcare needs."
"Shared decision making is a way to really try to improve that communication process where patients can be vocal about what their primary [health] needs and concerns are," said Cook, a clinical psychologist and health-services researcher with experience serving diverse populations with medical, social and economic challenges. "They can be vocal about understanding 'What are the different options in my care and my treatment and which ones are going to work best for me?' The doctor and the patient work together to come up with what's the most ideal solution. We know from research that that process typically hasn't gone as well with patients of color as it does with white patients. So, shared decision-making is a concrete way to improve that process."
While encouraging and empowering LGBTQ people of color, YVYH sets out to determine how to improve communication and decision making between racial/ethnic minority LGBTQ people their healthcare providers.
"Sometimes LGBTQ people of color, even more so, facing many many layers of oppression and discrimination, might hesitate to bring up conversations about their sexuality or their gender identities, relationships, sexual behaviors, different things like that and so it's also very very incumbent on health professionals to make the setting so that people feel like they can bring their full selves in," said Lisa Gilmore, LCPC, MEd, the project manager for YVYH with Morten Group.
Marshall Chin, MD, MPH, is the principal investigator leading this project with a team of expert investigators. Morten Group was brought on to execute the outreach and recruitment needed for the study.
Cook explained that, in the first phase of the study, the University of Chicago team looked at existing scientific literature on the topic and wanted to move forward from what others had already figured out. He said there turned out to be very little existing literature on shared decision making in racial and ethnic minority LGBTQ populations.
Currently, the study is in phase two. Morten Group is working with LGBTQ communities of color, to conduct one-on-one interviews and focus groups across the Chicagoland area. This interviewing began in January 2016 and will continue through July 2016.
"I think it makes perfect sense [Morten Group's involvement] in terms of the earlier work we did around the needs assessment [Chicago LGBT Community Needs Assessment] and certainly, since the number one issue was healthcare, in our minds, this would give us another opportunity to look at healthcare as a need and how it actually turns out in terms of service delivery for many of our community members—what kind of interactions do they have with their healthcare providers, how does that impact the health outcome," said Morten Group President Mary Morten. "It's certainly something we understand at a fundamental level because of the earlier research project and we like doing a lot of research."
The project includes 10 qualitative sub-studies. These include Shared Decision Making in Transgender Population, Shared Decision Making in Older LGBTQ Adults, Shared Decision making in Hepatitis C, Shared Decision Making and Healthcare Providers, among others surrounding various criteria.
"We are working with human subjects and it is important that you take care when you are doing so and certainly we have many examples in history where that has not been the case, when human subjects have not been fully informed of the information regarding a research study," said Morten, adding she is happy good conditions are being addressed in a rigorous manner.
People interested in participating can sign up and get screened to see if they qualify. Qualifying includes, but is certainly not limited to, having had personal experience with a particular health condition, simply ever having heard of a particular issue, or ever having had a conversation with a provider about a particular healthcare issue.
"Something that's so cool about the design of this study is that we are asking LGBTQ people of color to give guidance to say how can your providers do this better," Gilmore said.
Healthcare organizations, community groups, health care delivery systems and clinicians will also take part in the study.
"The research absolutely supports that people of color have a significantly less-than experience when it comes to healthcare and then people of color who also identify as LGBTQ have an even more significantly less positive experience with healthcare providers," said Dr. Joel Filmore, a licensed clinical professional counselor at The Family Institute at Northwestern University and interviewer for YVYH. "It's definitely going to make a change for how things are done in the future pertaining to healthcare, LGBTQ and people of color."
The third and final phase will be analyzing and making sense of all the collected information. Cook said these findings will go into developing tools and trainings for healthcare providers and communities to improve shared decision making for LGBTQ racial and ethnic minority populations, specifically in under-resources settings.
"This isn't just the researchers going to go off and publish papers and present at conferences," said Cook. "We actually want to end up creating things that can actually change how healthcare is delivered, so your voice can actually play a role in making other people's lives better; making other people's healthcare experience better. When we talk about disparities, it's really life changing things. Disparities in mental health, depression for example, result in communities of color and LGBTQ populations having suicide attempts more often and dying more often. We're going to ask for people's voices and do something with it that will actually be concrete and useful."
For more information, visit j.mp/1TIuMLh, www.mortengroup.com/your_voice_your_health.php or chicagodiabetesresearch.org/research/lgbtq-sdm/ .
To contact YVYH, call 773-442-2591 or email ResearchStudy@mortengroup.com .
