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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.

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The Harvard Catalyst Community Engagement Program has developed the Community Coalition for Equity in Research to serve as both a source for high-quality community input on research proposals and protocols as well as a trusted communication channel between researchers and community stakeholders. Join us on the podcast as we talk to Mark Kennedy and Rosa Alemán about their work with the Coalition.

Mark Kennedy is a senior program manager in the Chronic Disease Prevention and Control Division at the Boston Public Health Commission. Rosa Alemán is a digital communications and content strategist at American Civil Liberties Union, ACLU, of Massachusetts.

Hi, Mark and Rosa, welcome to the show. Great to have you both here.

Mark Kennedy: Glad to be here.

Rosa Aleman: Thank you for having us.

Oby Ukadike: I'm looking forward to having this conversation about the Community Coalition for Equity in Research and your work there and what led you to there. I just said your names out loud. But if you introduce yourself and talk to us a bit about your background and who you are.

Mark Kennedy: It would be my pleasure. So yes, I'm Mark Kennedy. I am a senior program manager at the Chronic Disease Prevention and Control Division at the Boston Public Health Commission. As I tell you about my work, it will blend into your other question about what led me to this work.

The Commission asked me to come on board because cancer has been the leading cause of mortality in the city of Boston since before the year 2000. But there's never been a real, purposeful, focused, comprehensive program to address that.

I do work here in the Chronic Disease Prevention and Control Division. And there's a reason for the cancer work to be docked in this particular division. But what I basically do is I do adult-facing communication around cancer, early detection, and follow-up.

I also do adult-facing work in the same capacity for some of the chronic diseases, like heart disease, hypertension, diabetes, and stroke. So that's why I am here. And the path to get here was really interesting. And I could talk for hours about it. But I'm going to truncate this a little bit for you guys.

I was running a management consulting company for several years, probably close to 15, 20 years. My last new client was the Dana-Farber Cancer Institute. And they were interested in trying to understand why people of color were not going to Dana-Farber to get treated for cancer. They were going across town to Boston Medical Center.

So the person that was contracted to do a set of focus groups to tease out that answer subcontracted to me. I designed, ran the groups, created the report, submitted it to Dana-Farber. And they asked me to do some work for them beyond that particular initiative.

And I ended up in the genitourinary oncology area working on prostate cancer. And that's where I really began to understand that population health is different from public health.

There are certain segments of the population that experience certain things a lot differently than others. And prostate cancer was really a major example of that in terms of it being the biggest area of disparity among all major cancers in terms of comparative levels of diagnosis and mortality.

So I really got excited about that. I literally decided to walk away from my consulting business and get into this full time. The prostate cancer world was my real grounding, not only in terms of the piece around population health but understanding that there isn't this big level-one resource that's going to now come into play, that's going to really change the game in the way that those that like evidence-based initiatives will understand.

So the work has to be done on the ground level. So I think that really suited me very well for not only the work I do here at the Commission, but it suits me well for the work that I do with the Coalition.

Oby Ukadike: Thank you so much for that introduction. Rosa?

Rosa Aleman: So my name is Rosa Alemán. And I'm a multi-media communications professional currently working as the digital communications and content strategist for the ACLU of Massachusetts.

My career started as a community-based media literacy educator in 2007. It was right around the time when the digital landscape was fully emerging. And society was going online. And everything was happening super fast.

I think I had a sort of early, instinctive motivation to move toward working on equity issues in relation to the digital divide. I had some concerns that people in my community would be left behind, that people I loved and cared about would not be able to participate.

And as a first-generation college graduate, I felt a real responsibility to get involved. And fresh out of college in 2006, I was asking questions like who might be left behind as a result of rapid technological advances being deployed?

I wanted to be the kind of community educator that factored in the voices that were hidden, voices not considered, voices that were silenced almost by design. And after receiving a bachelor's degree in communications, I took a job through Bunker Hill Community College teaching computer literacy classes at the Suffolk County House of Corrections as part of a reentry program meant to reduce recidivism and create pathways to higher education opportunities and career development for people who are incarcerated and struggling with things like chronic poverty, mental health issues, drug addiction, and homelessness.

I went on to become a community-based educator, aligning myself with mission-driven organizations that were promoting antiracism work and doing equity education work, initiatives designed to create learning environments for people who didn't have access to the kinds of technology that were being developed.

I worked at the Museum of Science Computer Clubhouse and, beyond that, spent nearly eight years of my career as a youth and community advocate doing creative education and collaboration with the MIT Media Lab's Education Technology Workgroup supporting the equitable deployment of educational innovations and science technology, arts, engineering, and mathematics.

I wanted to bring the solutions coming out of those collaborative connections back to my community, the community I grew up in Lawrence, Massachusetts. And I was able to be of service in supporting the development of one of the very first youth-led makerspaces in the city of Lawrence at a place called Movement City.

I think those experiences fundamentally shaped my thinking on equitable solutions, on what equitable solutions could look like and feel like in practice. And in some ways, those collective career experiences have led me to pursue opportunities like the Harvard Catalyst Community Coalition. I see this as a way to continue to chime in on the critical importance of community voice and in designing solutions together for long-term equity.

Oby Ukadike: Thank you both so much for sharing your experiences and, even from a historical perspective, what is bringing you to the Harvard Catalyst Community Coalition for equity and research. So what is it that you all do? You can give us and the listeners some context about what this group does.

Mark Kennedy: Rosa, do I have your permission to jump in? Or would you like to start us off?

Rosa Aleman: Of course. Always, Mark. [chuckles] Go for it.

Mark Kennedy: Very good. The Community Coalition for Equity in Research is a very interesting phenomenon in that researchers will come to us after having gotten some funding and created some initial design for a research study to help understand if they've adequately built in circumstances or considerations, if you will, around health equity into the design of the research.

Ostensibly, these are researchers that are interested in serving people of color or people that have been historically sort of-- not had as much access as other people in particular situations or have suffered worse outcomes compared to people in the same situation. And they're trying to understand, how do we reach these populations? And how do we take health equity into account as we design the research?

So that's really where it starts out. Of course, I'm interested, in terms of my particular passion, how do we reduce disparities? And how do we improve outcomes?

And our researchers really have, at their heart, a desire to do the same thing, right? So it works out really well because I think that a lot of them don't have the long-term relationships or any, even, short-term relationships for that matter that really makes the connection between the work that they want to do and the people that they want to serve.

So again, what we do is to help them in lieu of that connection to at least understand the way that their study design could be improved through the lens and context of health equity. And I'll ask Rosa if she'd like to add anything to that.

Rosa Aleman: I would say we approach the work of reviewing medical and scientific studies as a team, as a community, rooting our efforts in finding more equitable solutions that might contribute to healthier people living a better quality of life. And with every new study that comes our way, our Community Coalition is in the practice of taking on the roles of creating a critical conversation that we take turns actively reviewing study components directly with researchers who bring their projects to us.

We take the role of critical observer and reviewers of the components of the study. Researchers send us their study materials in advance. And we take time prior to the conversation with the research team to really examine the content of their research proposals.

Our Coalition uses a rubric that was designed specifically to help identify evidence of equitable practice and, in some cases, lack thereof. [chuckles] We start by asking researchers to explain their thinking in a non-academic, conversational way. And we do this in order to gain additional context about the researchers' approach, about the plans that they have structured to explore their study objectives.

We use their responses as opportunities to sort of gut check with them. If something doesn't feel right, we let them know. We ask researchers questions like, have you made any effort to engage community-based organizations in the regions where you plan to deploy your study? Has your research team done the due diligence of work in centering the targeted community?

Have you tried to engage frontline workers, health practitioners, and leaders who are already working with the community that you're trying to reach? We ask them to think about the different ways that they could enter community in an earnest way and build and start the process of building a relationship. We are an entry point for that.

Oby Ukadike: That is really great. And something that I heard both of you talking about, the red thread through it, is, how do you think about relationships? How do you center the community you're trying to reach? I really liked what you were both saying about how you even approach the researchers and ask in plain words, tell us where you're starting, how you came to this point.

How do you help researchers? And how do you, in turn, in tandem, support the community? So if you could both expound on that, that would be great.

Rosa Aleman: I think we make an effort to help researchers get a better sense of whether the language that they're using to describe their goals and objectives actually engages the communities they hope to positively impact. As a Coalition, we support researchers in moving from mere hopeful gestures of equity to actionable plans, accountable plans that can have a positive community impact in meaningful and measurable ways.

And one of the key things that our Community Coalition does to support and strengthen these critical, life-saving research studies is thinking collaboratively with researchers about their distribution plans for the work that they're doing in the areas of, for example, cancer prevention or supporting communities that are essentially like food deserts and gaining better access to healthier foods, more nourishing foods.

We really think about things like if you are trying to bring a study to this community and it's about food, what are you not considering? For example, there was a study that came to us that was about addressing the need for more healthy foods to reduce hypertension, I believe. And, Mark, you can correct me on that.

Mark Kennedy: That's right. It was hypertension.

Rosa Aleman: OK, yeah. So part of it was helping them think about, how do you build meaningful connections in relationship to something as critical as food?

People have certain relationships with food. And you can try very hard to get people to eat healthier. But if you're not considering the fact that there's cultural nuance in the types of food that they consume, then there's some sort of disconnect that doesn't make for the kind of connection that a study like this could benefit from.

And so part of what we're doing is just constantly trying to help researchers bridge those language disconnects or cultural disconnects by asking them to consider Black communities are not monolithic communities. How can you introduce the nuance of cuisine that can be healthy but still culturally relevant?

And thinking together about these things in a conversational way takes us outside of the research framework and the research mentality and puts us in a space of human connection to begin with. And I think that really motivates how researchers then take community input and come back to us with ideas of how they've deployed our input and our connection. And we can talk a little bit more about that particular study. I think Mark has quite a bit of insight on that, as well.

Mark Kennedy: If I can build on some of the things that Rosa mentioned, I want to suggest that to the extent that what Rosa just said, which is absolutely spot on, is more of what I refer to, for lack of a better word, as a static approach, which is you have a study in front of us right now. And we're giving you feedback based on what it is that you brought to us.

I think there's another dimension to this, which I would refer to as a progressive measure, which is we certainly will look at the study that you're presenting to us. But going forward, we want you to be thinking ahead of time in terms of how to advance the field of research design.

How do you actually build health equity as a baseline for research design going forward? So the extent to which we can give you comments on the design that you're bringing to us, we also want you to take the next step and begin to think less about, how do I fix this, and more about, how do I change my overall approach to resource design to make sure that it includes the kind of equity-related considerations that need to happen?

And you'll notice a particular theme here. Particularly when you're talking about a research that already has the funds and already has done the design, if they do not yet have a relationship in the community-- and of course, you picked up on that notion, Oby, quite nicely in terms of what both Rosa and I are saying-- if you don't have those relationships upfront, you're already walking in handicapped.

So if we give you this retrospective view of, let's talk about what you've already done, if we then ask you to take a step back and say, how can I make equity considerations a baseline consideration as I design research, then the next piece is, how do I now look not from this vertical helicoptering into the community and saying, all right, can you work with me, how do I actually engage the community without any study on the table and just go about the diligence of building relationships?

In lieu of any particular study, let's talk to the community. And let's help people understand the immediate short-term and long-term value of the research in terms of the overall improvement of the health in that community. We're talking about not only treatment options for cancers and chronic diseases but access to things that Rosa was talking about, food and other things that people are going to need.

We want the researchers to stop thinking, I have the funding. Now let me go see what I can do. And I want them to be thinking, let me now learn about the people that I most want to help in my research anyway so that once I actually do get funding, I can actually co-create the design with the community, roll the design out with the community, and make sure that I know what is important from a dissemination point of view.

Stop looking at this from the rearview mirror. And be proactive in terms of building the relationships, co-building the design, co-delivering the design, and really be in lockstep as you disseminate.

Rosa Aleman: I think that part of what we offer the researchers in Coalition is an opportunity to put their guard down a little bit, to relax their stance as experts in the conversation, and embrace, for a highly charged moment, the vulnerability of once again being a learner, a listener, someone who is soaking in new ways of communicating their ideas and their goals so that more people can participate in the conversation and in the actions borne of those conversations.

We're asking researchers to step into a space of vulnerability with us, where they're engaging a cohort of highly concerned community members who want to be of support in adjusting the process and the lenses by which impact is achieved. It's really not an easy thing to do. It can be a highly charged conversation sometimes.

But it's one of those things that really tilts the frame for researchers so that they can have insights and perspectives that are not possible when they're so submerged in lab culture or academic culture or institutional cultures. It's a real conversation with real people who care and are pulling in the same direction toward equitable outcomes for more people and better health outcomes for more people.

Mark Kennedy: Very well said. And the slight additional build is you're doing that with people that are in many ways, culturally or otherwise, unlike you. That's the discomfort, or at least some of the discomfort, that Rosa is alluding to.

And you're claiming to do research and improve outcomes in a particular situation for a set of people that the data shows you need the intervention. But the thing that you don't know after your degrees and all the letters that you have behind your name is this is not a population that you're from or that you know much about.

So let's just relax for a second and understand that, OK, school is back in, OK? [chuckles] School is back in. Let's take a step back and acknowledge that we don't know, and let's learn. Let's build relationships. And everybody's going to be better off. And as Rosa so eloquently said, that's not the easiest thing for researchers to do.

Speaker: Hi, ThinkResearch listeners. We'd like to take a moment to tell you about one of our upcoming courses on funding, specifically for investigators who are seeking foundation and philanthropic grants. In this online course, which runs from April 26 to June 7, 2023, you will learn strategies firsthand from Harvard Medical School researchers who have successfully applied for these types of funding.

This course is open to those both inside and outside of Harvard. To learn more and register, please click the link in the episode description. Registration ends April 12. Thank you, and enjoy the rest of today's episode.

Oby Ukadike: You all packed a lot of great content into those answers. And I'm going to parse it out a bit and maybe ask us to dig a bit deeper and go on to this next question.

And maybe more of this is an opinion, partially the goals of your Coalition. But how do you see this changing research and honestly community participation in research? And when I say, "how do you see this," this is this progressive work you're talking about, Mark and Rosa, and the "relax your stance of being an expert and come in as a learner."

I feel like this comes up a lot in a lot of different spaces when I'm having conversations with people about just the curiosity needed to do anything in a community really, coming in inquisitive, asking questions, learning people's cultures. I love what you were talking about even in the example of bringing food to different communities, Rosa, and how it's-- there are a lot of things tied into food with different culture and what that means. So there was a lot. [chuckles]

Mark Kennedy: Yeah, and what's sacred, and what's not. And here you tell me that I'm not doing something right. There's a lot of nuance there.

Oby Ukadike: Yeah, and how do you want to see the work of the Community Coalition grow, is the other question I had. So I think for both of you, how do you see it changing research? How do you see it increasing community partnership? And then how do you want to see the work of the Coalition grow?

Mark Kennedy: Before you can change community partnerships, you actually have to have community partnerships, right? So again, this is a slightly different positioning from comments that I've already made, but that's really where I think-- and Rosa probably has some additional considerations-- but I think that's really the goal for me.

It's let's just understand that the thing that we don't have when we try to do these interventions is those relationships. I'll use a particular slice of this as an example to amplify my point.

We have a fair amount of dialogue with the researchers that come before us on the particular aspect of incentives. So in the broad sense, incentives actually do two things whether this is the intent of the researcher or not.

The first, of course, is we want to at least respect on some level the time that people are giving us, the contribution, whether it's data or otherwise, that they're giving us, right? And if there's any burden at all, we want to make sure that we respect that and give you some level of compensation for that. And we all get that.

But the other piece in the context of this discussion is what I find even more interesting. And that's this. It's offered, whether intentionally or not, in lieu of a prior relationship with someone, because how else are you going to get someone that you don't know to participate in the research that you want them to participate in. You have to give them an incentive.

If you don't know them, you're already two steps behind because you don't really know what the incentive is that works best for them. You don't know what the incentive is that's most appropriate for them. So you're already starting from two steps behind.

Then what we find, Oby, is there is this assumptive approach because we tend, whether it's consciously or unconsciously, to define particular populations based on, you name it, shortcomings or issues or whatever it is as we use terms like "minority" or "underserved" or things of that nature. So we assume folks can use money. Let's just give them some money.

Trust me, this is a lot more nuanced than researchers actually realize. And there is going to be, whether they know it or not, whether they intended for it or not, some level of bias in this.

And one of the things that I've always loved about this group is that we're not shy about letting them know that. We tend to have a fair amount of discussions about those incentives.

So if you're able to do this right, these will transcend the considerations that you have with regard to your budget, right? So we've got this much money to do this much studying. We're going to set aside this little bit for the incentives. You have to rethink that. You have to really rethink that.

And I think that one of the best ways to do that is, as Rosa and I have been saying, take a little time to do some diligence upfront and really understand the population that you're trying to serve. It will inform a whole lot of things.

And if you're willing to do that before you even submit your grant application, you can submit based on that. And once you get the budget, you've kind of taken a step forward that you would not otherwise have taken.

So if you do the upfront engagement that I'm talking about, you can really help the planning and design of the study. You can really help the design of the study, the recruitment of the study. You can definitely help with the dissemination of the results, right?

So it really makes a lot of sense to turn this thing around and do some things upfront that will help you design, implement, and disseminate and, oh, by the way, respect the people that you actually want to engage in in the study. Those are some of the areas where I think we could look at being responsible, actually spearheading some significant change in terms of the way that researchers ought to be thinking about their work.

Rosa Aleman: I couldn't agree more with Mark. This is really about respect. This is fundamentally about human dignity and really connecting with people on a human level.

Our Coalition is there primarily to support and amplify community voice. And as a byproduct of our efforts and interactions, I think we end up really helping researchers, yeah? We end up impacting the way that researchers see their own work and the way that they then move forward with their design process in constructing more equitable research studies.

I think the Catalyst supports the community by stepping into a space of empathy, bringing our lived experiences as people who have grown in the community, whether as members of the community that we represent or as professionals in the community. We come prepared to share personal experiences, to get really real with the people that we're talking to.

A lot of times our knowledge and wisdom comes from personal experiences. So we're not just showing up to help Harvard be great at research. We're showing up to make sure that the people who are ailing, the people who are being left behind, who are being erased or ignored, the people whose pain is not properly understood have a voice in the conversation about designing research that aims to create equitable outcomes in health and wellness.

It's really a human experience. And I think both Mark and I, we continue to show up for these conversations because, for me-- I can speak for myself-- it really challenges my own humanity and challenges me to really think about, I know the value of community voice. I have lived it. I've experienced it. I've learned from it. I was shaped by it.

And I think that coming to the table with lived experience and then asking critical questions of people who are literally shaping the world we live in becomes the kind of conversation that just has the potential to really affect and impact equity for the long run. And it's so worth the time and the effort and the energy. So we continue to do it to the best of our capacity, learning with each iteration, each study that comes our way how to do it better, how to be more effective.

Mark Kennedy: And, Oby, there's one subtlety in our rubric that speaks volumes based on what Rosa just said. The very first time I ever filled out the rubric, I literally smiled when I saw the very last question. And the question is this. "Would you be willing to be contacted by the researcher again?"

To Rosa's point, the representative voices on this Coalition are exceedingly valuable and exceedingly insightful not only because of our lived experiences but because of the passion that we bring around the work that we do. So that question, for me, was the big reveal that says, this was not a one-off. We don't get to talk to you one time, give you feedback, and then you're off on your merry way.

The Coalition really was purposeful to say, you know something? If they want to talk with you again or if you would like to talk with them again, let us know.

We make choices, and a lot of us do, to say, this is a topic that's interesting to me. This is done for a group that's interesting to me. And beyond just this one discussion, I want to continue in this discussion to make sure that this works out in the best way.

And there have been situations in the conversation where one of us has offered, if you want me to be more involved with this, let me know. And I've really spoken up and said, look, if that person tells you that she is on board, you do not want to miss that opportunity, OK? [chuckles] If she offers you help, you take it. I mean, let me tell you right now. [chuckles]

So I really like the fact, again, that there's forethought to not only just giving this one-time feedback but to make sure that we have an opportunity if we choose and if the researcher chooses to continue those discussions in a way that can continue to help the researchers design and get the best outcomes.

Oby Ukadike: What two great points to end on. I really appreciated being able to talk to both of you about this work. And my final question is, what are your parting thoughts? What would you offer to researchers about working with the Coalition?

And for the listeners, I will say there will be a second part to this. And we will talk in more detail about connecting with the Coalition and things to consider, maybe some tips. But I leave the floor to both of you for final thoughts.

Mark Kennedy: Four words-- tear down that wall, that unintended silo between, this is research, and this is community. Let's just create that connection, create that blend between the two. It's got to start somewhere.

And as we get into it, as we continue to refer to these evidence-based interventions, right-- again, I do a lot of work in the prostate cancer space. And I know that the evidence that supports the guidelines for screening for prostate cancer aren't in sync with what the data says about who experiences the biggest burden.

We don't see any majorly funded national level I clinical trials to move that needle, right? So we've got to do that from the ground level. That's what this initiative is. This is research and community getting together at the ground level and saying, you know something? We can work together to get this done.

Let's stop helicoptering in with $25 gift cards and say let's actually get to know people. Let's let them know what we're doing. Let's learn what they want and need us to do. And let's figure out ways to meet in the middle.

Rosa Aleman: I think I would say to researchers, really consider the value of the opportunity that the Coalition is offering. We're offering you, the researcher, a chance to embrace what I would call productive tension that really moves toward positive change.

And if there's something wrong with your study, we're going to talk about it. And we're going to talk about it openly because we're in it for the same reason you are as a researcher. We want to have a positive impact on the communities that we're targeting, that we're talking about, that we're participating in and living in.

Our job is to ask questions of researchers in such a way that help them use what they're good at, use their faculties in constructing questions and problem solving to deeply consider the needs of the people that we're talking about. And so I think in those conversations and those moments, yes, there will be some tensions. Yes, there might be some friction in there. But it isn't friction just to be antagonistic.

It's really about, how can we find a groove together where we're all pulling in the same direction? And that sometimes means embracing tension. So I think that's what I would leave researchers with.

Oby Ukadike: Thank you so much again, Rosa and Mark. It has been a pleasure having this conversation with you. And we look forward to having you back to talk in more depth.

Rosa Aleman: This has been awesome. Thank you for having us.

Mark Kennedy: It certainly has been. Thanks to everyone.

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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.edu to inquire about being a guest on the podcast.