What will it take to bring equity and diversity into clinical and translational research? How can science restore the trust of communities disenfranchised from healthcare and medicine due to the direct suffering of previous generations at the hands of science? What lessons have we learned from COVID-19?
A coalition of community members representing these historically disadvantaged groups is trying to untie the tangled knots of systemic racism one research study at a time. The Community Coalition for Equity in Research, part of our Community Engagement program, seeks to build community voice and considerations for health equity into clinical research from the start, while strengthening community-academic relationships throughout Massachusetts. The Coalition is funded, in part, by a gift from Blue Cross Blue Shield of Massachusetts.
We caught up with two of the coalition’s community leaders, Carolina Trujillo and Albert W. Pless, Jr., just after a paper describing their inaugural year was published in the Journal of Clinical and Translational Science. Trujillo is executive director at Citizens Inn and former community relations director for Essex Media Group and the publisher of La Voz Newspaper, a North Shore Latino newspaper here in Massachusetts. Pless is the director of diversity, equity, and inclusion for the Town of Andover and previously served as program manager for the Men’s Health League at Cambridge Health Department for more than a decade.
Your recent paper illustrates that, 30 years after Congress mandated more diversity in clinical trials, we’ve made little progress. What do you see as the primary barriers to moving forward?
CT: One of the barriers that we see constantly is that people and institutions don’t necessarily understand what diversity is in terms of inclusivity. Some people think diversity only means translating materials into 300 languages. Well, that’s not really diversity and inclusion. Inclusion is looking for the voice of the community and the people who are already doing the work in the communities, and being respectful of their roles and the relationships they’ve built within these communities. I think that’s the primary barrier, this idea that one can bypass the experts in the field and do it their own way.
“One of the barriers that we see constantly is that people and institutions don’t necessarily understand what diversity is in terms of inclusivity.”
AP: I totally agree, and would just add that one of the core barriers is the lack of community trust in research. Even though we are 30 years past that mandate, we’re still trying to undo the harm. We’re trying to build intentional trust with the community so they can participate in clinical trials. Hopefully, we’re helping researchers understand this lack of trust and why they have to be intentional with their overall approach to communities, with marketing materials, and in their follow-through with communities. We’re developing the language they can use when engaging with communities. A lot of this is about building trust that was broken years ago.
How does the Community Coalition for Equity in Research help remove those barriers?
CT: We do see researchers making good efforts, but usually there are pieces missing. Those missing pieces include the voice of the community and the voices of the people who are doing relevant work in their communities. People in the community are sometimes already working on issues that researchers are interested in exploring but their lived experience is not considered because researchers sometimes don’t make those natural connections. That’s what the coalition is trying to do for them, to make those connections and begin to bridge that huge gap. At a community level, we can mobilize people. But we have to make sure that those two worlds don’t collide, that they work in synchronicity, that they dance together nicely. That’s where the coalition is instrumental. We point out the steps to take when researchers are planning to be involved with communities.
AP: When researchers come to us, we are intentionally looking at a number of things. How are you speaking to the community? Are you understanding where they are? Not where you want them to be, but where they are. Are you meeting them where they are? I think that’s critical. The coalition is powerful because we come from all these different disciplines and sectors, so we have diverse lenses from which we look at this. Many of us have worked in these communities, and we represent these communities.
CT: We are part of these communities.
AP: Exactly. That’s the power of the group. The power is in who we represent.
What would be your key message to the research world?
CT: Historically disadvantaged communities haven’t had positive relationships with researchers. Unfortunately, our history tells us that we’ve been exploited and used as guinea pigs, with devastating results. With COVID-19, levels of vaccination were much higher among white people versus minority communities, which we believe is a direct result of this history.
To make reparations, the work needs to be community-centric – not research-centric. We have to make sure that the voice of the community is represented, and that researchers work with the community to improve conditions in the community, not just to get funding for their next study. There needs to be intentionality in that work. There’s tremendous opportunity to improve this process, and we need to make sure that we approach it the right way.
AP: I would say learn from your mistakes. Just simply that. Research has had a very difficult time connecting with communities of color because there have been some incredible missteps. As individual researchers and as a collective, learn from your mistakes.
In your paper you write about the “productive tension” between researchers and coalition members and among coalition members themselves. How do you navigate the conflict that is inherent to this type of work, where cultures may clash?
“The coalition is powerful because we come from all these different disciplines and sectors, so we have diverse lenses from which we look at this.”
CT: There’s opportunity for growth when different perspectives come together and create productive tension – which is a term coined by coalition member Rosa Alemán during one of our meetings. As a culture, we have demonized conflict. Conflict is not necessarily bad; it lends you an opportunity to learn how somebody else is thinking which may be totally different from your own perspective. One of our members is Asian and she’s always asking how many Asian languages are being used, and are you including people of Asian descent. Not one researcher we’ve worked with had included translation into Asian languages in their studies. So it is a constant intentional reminder that we cannot only focus on Latinx or African-American population when we are addressing equity in research. That is an example of productive tension.
What are your hopes for the Coalition’s work moving forward?
CT: I think that the work that we’re doing is important and relevant, and that it should continue. I know that to do that, there needs to be funding but it has been a successful first-time experience. I do feel that we’re going to be the first generation of this cohort and hopefully not the last. We hope this continues to be part of the standard process for any researcher who wants to engage with community. I think that’s the respectful way to address communities.
AP: I’m a Southern guy. When I was growing up, I used to skip rocks, and notice how different rocks would make different kinds of ripples. I believe that we should pay attention to the ripples when we’re looking at how to engage community. We have to be intentional about the ripples that we’re causing.
This work is not going to happen in the way that we need it to happen unless we learn from what was done before and correct what we can. We can’t make those same mistakes again. We have to learn from them. Let’s do it right this time. Let’s be culturally respectful around engaging community. Let’s do that right this time. Let’s think about compensation and not assume participants are just going to participate in your studies without compensation. Let’s do that right this time. Let’s make sure that projects like this coalition, like Harvard Catalyst, and other like-minded organizations are adequately funded, that they have what they need to do this work. Let’s make sure that we are putting the community at the center.