Oby Ukadike: From the campus of Harvard Medical School, this is ThinkResearch, a podcast devoted to the stories behind clinical research. I'm Oby, your host. ThinkResearch is brought to you by Harvard Catalyst, Harvard University's Clinical and Translational Science Center, and by NCATS, the National Center for Advancing Translational Sciences.
Join us for the second part of our conversation with the Harvard Catalyst Community Coalition for Equity and Research. Mark Kennedy and Rosa Aleman join us again to talk about connecting with the coalition earlier in your work, and how to better and best connect with communities. Mark Kennedy is a senior program manager in the Chronic Disease Prevention and Control Division at the Boston Public Health Commission. Rosa Aleman is a digital communications and content strategist at American Civil Liberties Union, ACLU of Massachusetts.
Welcome back, Rosa and Mark. Thanks for joining us again.
Rosa Aleman: It's nice to be back.
Oby Ukadike: So we talked the last episode about connecting with the coalition earlier in the planning of research. And now I'm blanking on the term you used, Mark, in particular, but progressive--
Mark Kennedy: Yeah, That was the term. I talked about the static review of a standing research design versus this progression of moving the needle in terms of coming to us sooner so that we can give you information before you actually do the design. And then further still, in terms of, without a design at all, let's start actually doing the diligence of building relationships in the community.
Oby Ukadike: Thank you. And can you both talk to us about why that is so important? Obviously, we touched on that in our last episode. And we're going to go into a little more depth about things researchers can be thinking about and tips for them as they come to the coalition, but also just for them to have as they're thinking about their research.
Mark Kennedy: Oby, I'm going to actually go back to my prostate cancer reference, just so that you have some context. Again, when you think about how research can actually proliferate improvement in outcomes, prostate cancer is an excellent context because we have this fundamental disconnect between what the evidence tells us we should be doing in the early detection space and what the data shows us in terms of the extreme level of disparity in terms of poor outcomes, right?
I don't know if you have a reason to be aware of this. But Black men die at almost a rate of three to one compared to white men in terms of mortality from prostate cancer. And it's even a bigger gap for other men. If we're not intervening earlier, then we don't get to make any headway against that gap.
We don't see any of these major level one studies coming online. So we've got to actually do this at the ground level. So this is an excellent example of what we mean when we say, if we're serious about improving outcomes for particular populations, if we're serious about reducing the extent to which there's disproportionate burden or disproportionate levels of poor outcomes, then we're going to have to roll up our sleeves and do this ourselves.
So we want to make sure that researchers and community are sort of co-located in the space of, let's get to know one another, let's understand one another, and let's actually understand what it actually takes to make some headway. As I think about what we can be doing looking forward, I don't think we really can look at doing this work seriously without understanding that the upfront due diligence is about building the relationship. We've just got to do that. We're not going to move the needle if we don't.
Rosa Aleman: Yeah, and I think to Mark's point, when we start early thinking about these things, when we engage researchers who are in early stages of thinking about their work, there is so much more room, there's so much more space in thinking about what the experience can be like for the people on the receiving end of the care and the efforts that are being made by researchers. So I think working with people who are in varied stages of their research, from early research interventions to work that's been already actively explored, gives us this conversational space to learn about what the coalition can provide in supporting researchers to think about how to start working with their own teams in preparing them to enter communities for the purpose of building these relationships, for the purpose of really creating an environment and creating a shared experience that not just is valuable for research purposes and for shaping health outcomes in the long run, but is also valuable for the people that they are engaging in that they can see themselves as agents of change in the community and people who are actively using their own personal experience to make sure that outcomes are better for more people around them.
So I think that critical bonding time, for lack of a better word, is really important. And it's helpful to be in conversation with researchers emphasizing that over and over again. We harp on that forever, and we'll continue to harp on the importance of relationship building.
Speaker: Hi, Think Research listeners. We'd like to take a moment to talk to you about one of our upcoming online courses, Study Teams and Early Stage Investigators. Join us for essential skills for conducting clinical and translational research, which will take place April 26 through June 14. This introduction to clinical and translational research domains will cover how to effectively participate, collaborate, and communicate within a research team and with key stakeholders.
It is open to all MDs, researchers, and scientists within and outside of Harvard University. To learn more, please visit the link in the episode description. Registration ends April 12. Thank you and enjoy the rest of today's episode.
Oby Ukadike: What if I'm a researcher that comes to the coalition with what I think is a good and great idea and immediately, immediately, your team sees flaws in how I'm trying to interact with the community, but from a research perspective, the idea is strong, but you can see plainly that I need some help? How do you approach having the difficult conversation with me to incorporate the different perspectives that each of you can see from your vantage point from your experience?
And if you can, if you have any examples you can share with us that you feel like would be helpful. But I will use myself as this full example.
Mark Kennedy: Oby, I'll be I'll start out by saying that from our perspective, I don't know if we really look at it as a difficult conversation. The researchers come to us because they want the feedback.
Mark Kennedy: Right? So giving them the feedback is not something that we find especially difficult. I can't say that I sit in this seat and suggest that it may or may not be difficult to hear. But it's certainly not difficult for us to give the feedback, particularly if they said, I'm coming to you because I want the feedback.
Rosa touched on it earlier when she said, researchers need to understand that they're stepping into a learning space not just the teaching space, because they're used to being the person in the room that knows everything. In this particular room, they probably aren't. OK?
So that said, it doesn't have to be antagonistic or even brutal. We can't let you lead without really understanding and getting the benefit again, of the lived experience and what that means and how that should translate into design, which is, again, why we keep saying, come to us earlier in the process. Because if you wait too long, we don't know how onerous the deconstruction and reconstruction is going to be for you. so let's try to get it right as soon and as early as possible.
Rosa Aleman: I think these conversations are only really difficult for people who come to us with the mentality that they're sort of just of checking a box, like they're showing up just to be like, we did our due diligence, and we embraced a community and got input. And that box is checked. Those people, when they actually realize what we're doing in conversation, I think find it to be a bit of a tense and uncomfortable experience.
Because what's happening is that we're pushing back on these sort of parameters that they've set up for what success looks like to them in terms of wanting to move toward equity. We are sort of challenging their superficial notions of equity development in research by saying, well actually, there are some real gaps here. And can we talk about that?
And I think we sort of disarm their discomfort by inviting them into conversation, by affirming that we understand that they mean well. We understand that the impact of your research is important. And to get this right is critically important.
And so this is not about tearing down the work that you've done or the work that you're working toward, or making you feel bad about yourself for not thinking about these things. This is not about shaming people. This is really about collaborating in the kinds of conversations that lead to more pathways for more people beyond research, beyond just the research experience and the outcomes of that research.
This is really about thinking like, what are the long-term opportunities here for making sure that the study that you're designing not only has impact for the people who are participating in that study in the immediate, but in the long term? How are their communities affected? How are their families affected? How are their children affected? And how can that be long lasting?
So we pose questions that really inspire deeper thinking about the thing they thought they were signing up for. So I think it works. It works in that way.
Mark Kennedy: To amplify that, Oby, the way that I think about it is forethought versus afterthought. If you're coming to us after the design of course, that's an afterthought. We want you to reverse that and actually think about it before things happen.
One of the things in the rubric has to do with who the study team is, and does the study team reflect a level of health equity, for the obvious reasons. Do you have people that are either from the community that you want to serve, that know the community that you want to serve, that have had some experiences there? And I can't think of a study that we've looked at among all the ones we've looked at that didn't have some level of a very repetitive issue, which is the fact that there was nothing about the design that showed a real, true engagement of the community that people want to serve.
If I look at the study team, is there anybody from there that actually represents the people that you're trying to reach? We just reviewed a study that had to do with getting younger people to use sunscreen because of course, the data is showing that melanoma is being diagnosed in people at much, much younger ages, and has been the case previous to the design of this particular study. So they wanted to engage people in that early teen to late teens age group.
They were able to get a waiver on consent. They were then able to get a waiver on assent, which meant that they had free rein to talk to anybody between the ages of 12 and 18 without any parental involvement, without any parental consent. And we let them know that was problematic. OK?
You're going to pitch a tent-- and I'm saying that, of course, facetiously-- at a number of beaches, and just engage with young people that you see. That's really not going to work in the particular communities that you're talking about wanting to help.
So in lieu of consent and assent, you need to figure out who's helping you with the recruit. How are you selecting the beaches? How you messaging, right? So they built in some teenage study participants to help create the messaging.
So how much upfront in the design are they engaged? Or is that sort of real-time, you approach them on the beach versus someone else approaches them on the beach? But give some serious thought to that. Are you working with actual organizations that will say, if you're going to those beaches, maybe we can help soften or warm, if you will, that interaction, so that when people see you, it won't be the first time, it won't be out of context.
So if somebody that's an adult is approaching someone that's not an adult, offering them a little carrot to come participate in a survey, it's like, no, this does not feel good just in terms of the way that society is nowadays. right it's a glaring example of when you look at the type of study, and you then begin to look at that degree to which there is any upfront engagement of community or not, the type of study exacerbates that issue in more ways in some circumstances of course, than it would in other circumstances.
So again, the research for the sake of research is what I mean when I say forethought versus afterthought. If you're trying to do all these things in terms of equity after the fact, you're already two steps behind. Start talking to people in the community. Start talking to organizations in the community.
Engage people like whom you want to reach. And let them help you with the messaging. Let them help you with the initial engagement and interaction, particularly if you've gotten waivers so that the parents and an adult doesn't have to be involved. It makes that even more critical. And that was some feedback that we gave to one of our fairly recent studies that I wanted to highlight.
Rosa Aleman: Yeah, this study that Mark is highlighting I think really is a good one for thinking about how we operate as a coalition. I mentioned in the previous episode about gut checks and working with researchers to sort of gut check their approach. And I think for me, as a coalition member, what's happening inside of me when I hear somebody present an idea like this, is that the little red flags are just popping off left and right. And those little red flags come as a result of years of experience working in community with parents who entrust their children to me and expect me to make sure that they're cared for.
I had a decade-long career as a youth advocate working in Dorchester, Mattapan, Roxbury, Charlestown, Somerville, with parents who were dropping their children off at the Museum of Science Computer Clubhouse and asking us to make sure that there are OK. So there's just a wealth of conversations that I had with parents over the years. And it's not just that.
It's also like the way our parents have been with us, the way that our tias and our abuelas and our community is vigilant about making sure that we're safe, that we're protected. And so something instinctively sort of pops off and there's a red flag there when we're thinking about a 12-year-old kid being approached on a beach by a stranger who's asking them to not just take a survey, but potentially put something on their body.
This is how the coalition moves together in sync to address those red flags and to sort of walk the researchers through the gut check process and to emphasize what Mark was saying, which is the importance of establishing those relationships with community-based organizations who are swimming in these waters already, who know how to engage people in the community, and who can be a bridge for you and who can develop a mutually empowering relationship that can last beyond just the research opportunities.
Oby Ukadike: Thank you so much for that. and thank you both for what you were just saying. It ties in a lot obviously to the first episode we did, and even the reality of bringing the human experience, as you expounded and pulled apart and talked about the cultural implications of communities and how they work together and how they see their children. And there's a lot in there that I wouldn't have readily thought of when you said the example initially. So I appreciate even that example and walking us through it.
Really, this episode is about, what are some tips that you would offer to researchers outside of the ones we've already talked about, who want the voices of different communities to be reflected in the work they do? What may you say to them, offer to them? Clearly, come and work with the coalition, work with them early, think about this long before you write your research, but in addition to that.
Rosa Aleman: I would say do not be so extremely risk adverse in this space. Be willing to take some calculated risks around showing up, willing to hear, to listen, to listen deeply to what's being offered. Because what's being offered comes from a place of people who have loved ones, have folks in the community that they care about and that they're worried about, and that they see value in supporting by encouraging researchers to learn more about our communities.
We are literally trying to create a bridge that invites researchers to learn about our communities in a way that's genuine, in a way that's transformative, not just as a result of the impact of whatever the research outcomes are, but transformative again, on a human level. And I think that researchers who embrace that and who come with an open heart and an open mind are themselves, potentially transformed as human beings. And that affects the work in the long run.
That affects all the other studies that they work on. That I think, is really our hope. Our hope is that people show up to conversations with the Community Coalition with an open mind and an open heart, and that they leave feeling the impact of a real conversation, a real honest conversation, with people who are welcoming them into the community, that that becomes a practice, that that becomes something that they build into everything that they do hence forth, moving forward. So that's really the hope I think.
Mark Kennedy: As you can see, Rosa doesn't leave much. She's so thorough and on point.
Rosa Aleman: I'm very passionate about it.
Mark Kennedy: Maybe a slight repositioning of something that Rosa said. And my advice is this. Research is not academic, particularly in this context. Let me tease out a subtlety that for me, is not subtle at all. Because when you think about this from the standpoint of academics, you might say, well, I studied, or I did a study that involved this particular group. Study versus getting to know are two completely different things.
So if you're looking at this from the lens of an academic person, you're doing a study. What Rosa and I have been talking about is take the time and actually get to know the population, because you now are beginning to think about this less as an academic exercise, but more as an exercise that at the heart of it, is about a sincere outcome of better overall health for the particular population that you're focusing on.
So it really differentiates. And it really allows you to step in, have a little skin in the game, and again, to not look at a study as a one-off-- started this date, finish this date, publish my paper, on to the next one. If that's your frame of reference, then we're going to continue to chase our tails in terms of trying to get researchers to understand you can't expect to be welcome in a community if you don't become a part of that community. So take some time and do it.
Show up at the local YMCA and introduce yourself. My name is Oby, and I'm a researcher and here's what we do. These are the things that we like to focus on. These are the populations that we're most interested in. Is there anybody in your family that may have had this, this, or that other issue? Let me tell you how our work can help.
When you start talking about individual experiences, parents' experiences, children's experiences, extended family, friends, whatever have you, you now are beginning to resonate. I know. I just helped my mom go through this because we didn't know what else to do.
Well, when you're in a research study, it allows us to fix this stuff. I mean, you have so many ways to connect to people on a very personal level if you just take the time to do it. And an academic approach doesn't do that the same way getting to know does, right? Study implies that you're learning.
But when researchers really are looking through the lens of research from a strictly academic perspective, that's not what they're doing. They're gathering data. But they're not really getting to know the population. My suggestion to researchers is, stop acting like this is an academic exercise. It is much more than that.
Oby Ukadike: Brilliant. There's nothing more I can add to both of the statements that you all both had. And we thank you so much again for joining us. Following this episode and for people listening, we will direct you towards the Harvard Catalyst Community Coalition for Equity and Research, their web page. There's lots of resources there. The study review rubric is there.
Rosa and Mark, thank you, thank you, thank you for having this conversation with us again.
Rosa Aleman: It's been a real pleasure. Thank you for inviting us.
Mark Kennedy: We loved it. Thank you so much for the opportunity.
Oby Ukadike: Thank you for listening. If you enjoyed this episode, please rate us on iTunes and help us spread the word about the amazing research taking place across the Harvard community and beyond. We are always looking to connect and collaborate with the research community and would like to hear from you. Please feel free to email us at onlineeducation.catalyst.harvard.edo to inquire about being a guest on the podcast.