Alliance Discussion with Gelise Thomas: Diversifying the Research Landscape through Research Equity, Accessibility, Diversity, and Inclusion Initiatives
A diverse and inclusive research environment that engages scientists and community members is key to good science that leads to better health outcomes for all. Gelise Thomas, Assistant Director of Strategic DEI & Health Disparities at the Clinical and Translational Science Collaborative of Northern Ohio (CTSC) within Case Western Reserve University, joined us for an alliance discussion to speak about the work of CTSC and how their Research Equity, Accessibility, Diversity, and Inclusion (READI) initiatives are working to shape a more diverse and equitable research landscape. Here are some of her insights on:
The unique READI educational tracts:
“We have divided our programming up into three education tracts – research policy impact, special populations roundtable talks, and equitable engagement. There is so much untapped potential for the benefits of the research that those in our research community are doing. From basic science, preclinical clinical trials, public health, and having the patient voice at the center of it all, we need to make sure that as we are tackling social determinants and drivers of health that we are looking forward to the impact that our research could have on policy. We really are trying to make sure that our researchers are thinking about policy first, as they’re developing and redeveloping their studies.”
“We also have these monthly talks for the community organization participants. They will talk about special populations that they serve and ways that we can get involved as a research community, whether it’s teaming up on grants or just being better partners. Within that we focus on race and ethnicity, sex and gender, rural communities, and people with disabilities. We also had a Diversity Action Plans workshop that built off our roundtable talks. With that we are looking to the FDA (Food and Drug Administration) and getting final guidance. We want to make sure that we’re following the law as we are building those Diversity Action Plans and that we’re serving as a resource for our research community, many of whom are already creating Diversity Action Plans to try to figure out what the FDA is expecting.”
“Then we have our equitable community engagement series. So, we have talked about how to build respectful relationships with community health workers to advance research, we have looked into ways to involve community members as co-authors on research, manuscripts, and publications. A lot of grants are requiring [community engagement] now, but how can you make sure that on the front end you’re paying people their value and being respectful of the time and talents that they bring to your research that oftentimes goes overlooked.”
Using big data to diversify workforce development pathways:
“An idea that came from our first Health Equity Research bootcamp was Big Data Tank: Infant and Maternal Mortality/Morbidity Research edition. If you are familiar with Shark Tank, this was a friendly Shark Tank-style pitch event where individuals from the bootcamp were able to pitch their ideas in the infant and maternal morbidity/mortality space. Across the nation, the [infant and maternal mortality] numbers are just crippling. We want to do something about it and we’re willing to use big data to do that. So, we gave all our participants access to TriNetX, a real-world data platform that the CTSC worked for over 15 years to make available in our location with no IRB required. So, we’re looking at easier ways to diversify the workforce development pathways and pipeline in research. TriNetX was a great way to introduce that to the community that participated in the bootcamp.”
The CTSC’s Health Equity Challenge Series:
“We launched the [Health Equity Challenge] series last year. We’ve had two book discussions with health equity themed books. We’ve looked at two films and had nine plus film screenings for both of those. This year, we’re looking at women’s health equity and we have had over 1000 participants. Ultimately the goal is to have people in a shared space from different disciplines in the community at large and have this environment where people can be vulnerable, and really take home what their role in the biomedical research enterprise is because we all do have a role in it. [In addition], Dr. Dierdre Cooper Owens, author of Medical Bondage: Race, Gender and the Origins of American Gynecology, we were fortunate to bring her to Cleveland [to speak] and we had around 45 different community stakeholders in the room – clinicians, researchers, people interested in learning about health equity.”
Takeaways that the research ecosystem at large can take from the CTSC’s community partnerships and involvement in DEI efforts:
“One key point is that the CTSC launched its inaugural community advisory board this year. It’s a diverse cross section of individuals whose lived and worked experiences will help inform and direct future programming and initiatives. This includes studies, funding opportunities, and more. When I think about key takeaways for the research community at large – co-design and collaboration can take many forms. Ideally you’re involving people at the beginning when you have that blank slate but if for some reason you can’t, whether it’s because of limited resources or limited time, then you should be planning for that integration of meaningful feedback that the community will give you as you are iterating through your programming. A good example is with the READI programming. All our programming and events are open to the public but as we are trying to better meet the needs of the public, we need to make sure that we are integrating and involving the community at the beginning. I think it’s all about continuing to create these spaces where we can have researchers speaking directly with the community, the community speaking directly with researchers, so that we can have better health outcomes, and advance health equity in that way. If we’re not, it’s a lot of guesswork and we don’t have time for guesswork when lives are at stake.”
Since establishing a diversity driven program, how the approach to clinical research has changed at Case Western University:
“We are sending a message to the research community that DEIA is here to stay and we’re here to support you through your journey. We are trying to relay that integration is key – how can we make DEIA a part of the foundation of our existing efforts? As I mentioned, with the Health Equity Research bootcamp, it wasn’t that the knowledge, the topics, and presenters were new, but it was the opportunity to meet with a group of individuals who typically are not invited to the table to talk about research, to talk about what it would take for them to become principal investigators on their own studies, to apply for funding successfully. I say, look at all of your current existing efforts whether you’re an academic medal institution or not, and try to think outside yourself – who is missing; who can you invite to the table; who can you create a new table with?”
Have the National Institutes of Minority Health and Health Disparities been effective in researching and addressing equity:
“I think that [NIMHD] has absolutely been effective in researching and addressing health disparities and equity for a couple of reasons. [The first is] being able to have those resources from an intellectual perspective, that brain trust of people who are interested in exploring those problems. I think one of the pieces of feedback that people get when it pertains to health disparities generally, is that they don’t want to see more research about defining the problem of health disparities. We know what the problem is, so what do we do about it? Especially [on a local level] people want to see action. The more that we can do with that research that has already told us what the problem is and to implement interventions, the better. I think that communities will have much more respect, urgency, and excitement about research and the biomedical research enterprise as a whole if they can understand the connections and are part of those stories. I think that that’s important.”
How CTSC is engaging community practitioners in the clinical trial ecosystem and ensuring that the trials are being offered to a diverse group of patients:
“The CTSC itself is a hub for researchers to provide those resources for research and to promote collaboration. We are not doing that ourselves, but through our partners who are hospital institutions in many regards. They are doing a lot of great work, they have community advisory boards who are helping to inform their studies, they are doing community outreach at local colleges and high schools and maybe even middle schools in some cases to talk about the careers. And when you talk about careers, those are conversations that are being had when the kids go home and talk with their parents and ask questions. So, we’re piquing curiosity throughout many different demographics and communities. In terms of increasing clinical trial diversity, it’s a lot of community outreach and engagement, especially in primary care practices and with some of our larger events. One of our partners, MetroHealth, just had their first multicultural Women’s Health Fair. I believe thousands attended and they got screenings. From those screenings, you maybe get a diagnosis that could qualify you to participate in a clinical trial. So those conversations are bubbling and ripe for opportunity to increase diversity and clinical trials.”