Burel Goodin, PhD, on Building Trust in Underserved Communities to Improve Clinical Trial Outcomes

Burel Goodin, PhD

This is a 2-part interview. Click here for part 1.

Social determinants of health (SDH) are the environmental conditions in which people are born, live, learn, work, play, worship, and age that affect health, functioning, and quality-of-life outcomes and risks. SDH examples include wealth, access to health foods, education, housing conditions, discrimination, and isolation or social supports. Research has demonstrated a linkage between chronic pain and a number of social determinants, including mental and physical stress at work, socioeconomic status, rurality, occupational status, neighborhood, and education.

Furthering research in this area may lead to improved treatment optimization; however, tapping in with underserved communities and reaching larger, more varied patient populations, has been a challenge. This topic was brought up in a session at the 2023 American Headache Society (AHS) Annual Meeting, held June 15-18, in Austin, Texas, by Burel Goodin, PhD. In his talk, Goodin stressed the need to engage underserved populations in honest and effective ways to advance pain medicine research.

Goodin, a professor of anesthesiology at Washington University in St. Louis, sat down with NeurologyLive® following his presentation to discuss the importance of connecting with these populations, and why they play such a critical role in rounding out research. In addition, he spoke on the need to disseminate data to these individuals after studies conclude, as well as the different types of research needed to eliminate issues with SDH.

NeurologyLive®: How can we better engage the underserved populations better?

Burel Goodin, PhD: Sometimes to think that you're going to directly engage your population of interest is problematic because there can be a lot of mistrust, or lack of understanding about what the real purpose of the research even is, which can leave a person feeling like a guinea pig, or something sort of less than human. They don't necessarily trust it. Having come from Alabama previously, where the Tuskegee trials [took place] and the fallout from that is still alive and well, it can be helpful sometimes to have a conduit into the population, a maven of sorts.

If you look, there's oftentimes a lot of grassroots advocacy groups, or communal leaders who you may need to try to get a sit down with first. It's only after you convince them and they provide the blessing of you, as the investigator, that the community will really listen to what you have to say. It can take a lot of work before the actual work of the clinical trial can commence, and I think that's often off-putting to a lot of folks to as investigators because they don't necessarily know where to start. When you present it like that, clinicians are like, “I just want to know whether or not my treatment works.” Obviously yes [we want to know to], but this is the foundation for being able to appreciate if it [the thing you’re researching] does or does not work, and why and for whom and under what circumstances.

That's very important, but oftentimes it just goes straight directly to the population of source. It kind of it gives the feel of this person coming down from their ivory tower leaving the population wondering, do they really care? It's only until you build up a little bit more social capital that you might get people who are then willing to sort of sit down and have a place at the table with you to hear about your trial and consider engaging in it.

Again, I don't think that investigators or physicians do that maliciously or intentionally, I think that we just get caught up in what we're doing. And we're like, “OK, I got my use out of this population, and I wrote a paper.” But I would bet you all the money in my wallet that the population that you're interested in, and for whom you even did this study, is not reading your paper. Being able to disseminate results back to them in a way that is meaningful to them [is important]. That's an issue too, that's woefully underappreciated, and poorly done. In doing that, if that’s your approach, any sort of grace or social capital you might have created for yourself on the front end is going to be lost on the back end. Because you didn't carry forward on your commitment to helping the population out and presenting [the data] back to them and making sure that they see a useful deliverable on your efforts.

What other types of research needs to be conducted to further fix these issues?

As it relates to the research pertaining to social determinants of health, clinical trials or otherwise, once we [start] characterizing—we think this is a social process that's meaningful for why these individuals even experience something like say, headache or migraine, or we think this is a social characteristic that is important for informing our treatment approaches—the question still remains, what treatments are we talking about? How are we intervening? Are we intervening at the individual level? I think most of the treatments are like that. The clinical trials are, how do we infect this particular patient?

But if there is something that's happening to the patient on a more systematic level—like if individuals are distrustful of health care—could there be an intervention that helps promote better trust, but is done at the healthcare level? I think about this, and honestly, I don't know exactly how to make that happen. My hope is to talk to people smarter than me about how to do that so that I can be part of that change. But a lot of these social determinants of health are problems that are laid at the feet of the person having to bear the brunt of the negative. We also put the onus on them to sort of fix it for themselves, and here's a tool that might help you to do that. Can we get better at helping to thwart the problem before it trickles down at their doorstep, so to speak? That's where a lot of work can still be done. It is complex work, it's costly work, but I think it's worthwhile work. If anybody's interested in doing that, please reach out to me.

Transcript edited for clarity. Click here for more coverage of AHS 2023.