The Future of Community-Driven Research with Jen Brown, MPH, & Sherida Morrison, MS, MA

[00:00:00] Erin Spain, MS: Welcome to Science and Translation, a podcast from NUCATS Northwestern University Clinical and Translational Sciences Institute. I'm your host, Erin Spain. The benefits of medical research can take years to reach the communities who need them the most. Since 2008, the Alliance for Research in Chicagoland Communities at Northwestern, known as A-R-C-C or ARCC, has been working to bring these benefits to communities faster and more effectively, facilitating relationships between academic investigators and community members. Here to discuss this important work are Jen Brown, director of ARCC and Sherida Morrison, associate director of ARCC. Welcome to the show, both of you.

[00:00:48] Sherida Morrison, MS, MA: Thank you.

[00:00:49] Jen Brown, MPH: Thank you.

[00:00:50] Erin Spain, MS: Well, Before we get to know both of you a little bit more, I want to talk about "community-engaged research" as a term. This is a broad term, so break it down for us a little bit. Who are common community partners? What constitutes engagement and what stages of the research process does this include?

[00:01:08] Jen Brown, MPH: Community research, yes, is a broad umbrella that basically is talking about an approach to research. You can have community research related to any type of research, quantitative, qualitative, genomic, clinical, population health. The basic thing that makes it community research is an acknowledgement of the type of expertise that community brings in terms of lived, cultural practice expertise in a health condition, in a community, in an identity too. So it acknowledges that there's multiple ways of knowing, multiple types of expertise, and that the type of expertise that academia brings to the table is really important in terms of scientific, methodological or clinical expertise, and we also need to combine that with the lived expertise of patients and community members if we want to have research that is most likely to have an impact on addressing health inequities.

[00:02:04] Sherida Morrison, MS, MA: Yeah, Jen said that beautifully. And the only thing I would add is she used the word "equitable," and so it is viewing that expertise the community has as real expertise, that the researcher does not have. It's a partnership. We're working together to resolve issues and to ask questions. So while a researcher may have read about this particular community, or may have some data access to data relative to this community, these are people who are living these experiences every day. And you talked about, at what phase, I mean we're talking about as early as ideation. So as soon as this becomes a thought, an idea, community needs to be at the table.

[00:02:44] Jen Brown, MPH: Truly as soon as possible, because one thing that we hear from community partners over and over again is the importance of, as Sherida said, thinking about people as people and starting with relationships, not asks. So if it's starting with, There's this research project and we'd like you to participate, or we'd like you to help collaborate, sometimes that can even be too late because there needs to be a foundational relationship and trustworthiness related to that connection so that there can be a collaboration related to a research question.

[00:03:14] Erin Spain, MS: We're going to dig into all this a little bit more and talk about how do we start those types of relationships in the communities. But first I want to talk a little more about both of you. You are experts in this field. Jen, starting with you, you started ARCC, the Alliance for Research in Chicagoland Communities at Northwestern. Tell me about your trajectory into this space.

[00:03:33] Jen Brown, MPH: And I want to say from the beginning, and bring her into the space, that I was one of the co-founders of ARCC, along with the incredible, amazing Dr. Virginia Bishop. In 2008, we co-founded this together and unfortunately lost her shortly before the pandemic. She was an amazing educator, researcher, clinician, but first and foremost community. And as Sherida often talks about, really saw herself as bilingual, not only in terms of English/ Spanish, but in terms of community and academia. That was really important from the beginning. I had been working in many different parts of community and public health, everything from environmental justice to sexual health to smoking cessation. And at some point was like, oh, instead of carrying out other people's programs, I want to know more about what this looks like and let me go back to school and get a little bit more information. I had been working in grassroots community organizations, public agencies, entities like that. And when I got to school, I was like shocked what a disconnect it felt like between what was being presented and what I felt like we knew and needed in community context. And through that frustration, the amazing part of it was finding community and academic leaders who also saw the need to, again, really bring these different forms of ways of knowing and expertise together, which was community research. And so I've been in this field, sometimes working at the national level, sometimes working at the local level, ever since.

[00:05:03] Erin Spain, MS: Sherida, your role as associate director of ARCC is fairly new, but your relationship with Jen and the team is not new. So tell me a little bit about your background and how you came to ARCC.

[00:05:14] Sherida Morrison, MS, MA: Not the traditional way, I will say that much. So I have over 30 years in the nonprofit management space, founding a girl-serving organization, Demoiselle 2 Femme, which has served the community for many, many years. And also the Coalition on Urban Girls: Chicago. We were already dabbling in evaluation. I have some advanced degrees in sociology, and so I was always probing and digging and asking questions. And anytime we would do anything with the girls or with community, let's capture it either quantitatively or qualitatively. We weren't necessarily involved in community research. We were engaged in some rigorous evaluation projects, where they were more research-led and research-focused, and not necessarily us having a lot of say in the design. Jen mentioned Dr. Virginia Bishop who became our first academic partner at Northwestern, and we worked on a project collaboratively with her called a Partnership for Better Roseland, and our organization convened eight other organizations together to address school-based violence in the Roseland community. Working very closely with her, going out to presentations, inviting community to come and learn. We worked on the project and then I later joined the steering committee at ARCC, became the community co-chair for a while, and then Jen would invite me to participate on different panels and present research at conferences and papers. And just a wonderful experience. I have often appreciated my ability to work very heavily in the grassroots community, but had an opportunity to come in and work with Jen and I find it very rewarding, because I believe that what Jen and Dr. Bishop have designed is something that is taking us into the future of research, and really not just the future but the now in research. And so I consider it an honor to participate in working in their legacy, which is actually a community legacy for better partnerships that bring impact into our community.

[00:07:07] Jen Brown, MPH: I want to bring up, because you mentioned it and it's such a core part of ARCC. In the same way that we believe that research must be driven by those that are impacted by it, we know that the same thing is true for ARCC as a program that supports this type of research. And so everything that we do at ARCC is guided by our steering committee that Sherida mentioned, and this steering committee is comprised of community and faith-based organizations from throughout Chicagoland, public agencies and then a group of Northwestern representatives that also value and incorporate a community-driven approach to the work that they do. But we always have the balance in terms of numbers and power within the decision-making within community, knowing that power is a very big important concept within this approach to research.

[00:07:53] Erin Spain, MS: Tell me a little bit more about this approach and how it benefits both the people in communities and the people doing the research, the scientists.

[00:08:00] Jen Brown, MPH: Yes. There's actually a tag phrase that came out of the Disability Justice Movement that is often used to summarize what it means within community research, and that is: "nothing about us without us." Again, the people that are going to be impacted by the work must be those that are driving what the work focuses on, how the work is done, what the potential impact of the work could be, how the results get out, every aspect. We sometimes hear from community members that may have been engaged in research that doesn't use this approach, where it feels like they're involved in service to the research instead of reframing to think,: it's not about the research. First, it's about communities, it's about patients, it's about the health impact that we want to have. So it must start there. Research can be a tool for the type of health impact and addressing health inequities that we want, but it can't be about the research.

[00:08:54] Sherida Morrison, MS, MA: You mentioned at the top of the show that you know, research is behind in terms of community. That is something that has been my message for years to funders that oftentimes by the time you realize this is an issue, it's exacerbated in our community. So if you were going to donate or you were going to award grants for 50,000, they need to be 100,000 because, now that you realize it, it has become a real issue for us. It's an interesting model that allows researchers and community to come together through this process of partnership building. And so what does that mean? It means getting to know one another. What are your research expectations? What are your priorities? And then, what's our pace in setting this? What are some of those short-term goals that we can have and those milestones that are designed into how we conduct this research? I think another thing is looking at what really represents community. You know, now, organizations are saying, Hey, you're going to have to do some homework to find out who's the right community partner, because sometimes a researcher can try to google something and say, Oh, who's somebody that's working in the community? But while that organization may, you know, have access to the community through a particular program or a service it provides, it does not mean that it is a trusted partner in the community. And so sometimes researchers may find that they didn't necessarily have trusted access to the community. So that's why that partnership building, making sure that we learn from one another, is extremely important in this design. Jen knows I'm all about integrating empathy into this work, us doing some exploration. How about integrating some problem tree analysis? Because I think sometimes communities look at the branches, and not really understanding some of the systemic roots of what's actually causing the branches and the leaves that they're seeing. And so when we take this pace where we're learning together, we can identify areas that increase our capacity as researchers and academics, but also community can be impacted in their capacity built at the same time.

[00:10:46] Jen Brown, MPH: And I want to tease out a piece of what you were talking about, about why this is so important. You know, we must acknowledge the righteous distrust in research and in healthcare, generally related to the historical harm that has been perpetuated through research and healthcare. And not just the legacy, but even the continuation of that harm today. In terms of why a community member or a patient would or wouldn't participate in research, believe research, there's really deep issues here. There's a lot of talk about trust, but we really embrace the frame of trustworthiness. Trust says, Oh, will the community trust us, instead of as researchers or as an institution saying, What do we do that makes us worthy of trust. Part of that is really being able to be transparent and honest and make space to listen and hear people's potentially negative experiences so that we can create a foundation of a new approach where people feel listened to. It's not just about how communities or patients benefit from research. We have to acknowledge we cannot do this work as research institutions or health institutions without that community expertise. So it's a bi-directional benefit.

[00:12:04] Erin Spain, MS: So this takes time and investment to be able to build these relationships and do this the right way. ARCC and NUCATS offer, together, a number of resources to help health and research partners overcome these sort of challenges that they think they might face by doing community-engaged research. Tell me about the groundwork that you've laid to make it easier for folks to come into this space and do community -engaged research.

[00:12:28] Jen Brown, MPH: Yes, we are here at ARCC and at the Center for Community Health to provide support and infrastructure to help catalyze, move partnerships forward and advocate for the kind of structural and institutional supports that we need for those partnerships to be able to do that work. So part of it is really this kind of foundational relationship building, not only at the individual level in terms of researchers, but we've needed to do that as an institution and as a program. Northwestern has not had a strong history of community relationships. We're located in some of our toniest areas of the metro area: the Gold Coast, Streeterville and Evanston. Because we don't have the proximity to communities most impacted by inequities, some people may not have had as many negative past experiences with us that you might have for some other institutions. So we as a program are working to open doors and be able to have starting conversations on behalf of the institution. Some of that has just been so many listening sessions, town halls, coffees, breakfasts, lunches where we are getting to know people. So we do a lot of partnership brokering and network convening, a lot of relationship building, capacity building. You know, what does it look like to hold a meeting in a way that allows for communities to drive even when there's people with a lot of letters after their name. What are some of the tactical strategies to address power differentials in that way? What does it look like to do collaborative data analysis together? How do we build capacity and community by being able to hire community members and partners as data collection or data analysts? So a lot of capacity building in terms of workshops, one-on-one consultations, online resource directory. And then one of our programs that I think helps the most is we have a seed grant program where we provide several different kinds of funding to support the building of capacity, the building of time protected for this relational aspect, also some small research pilots to be able to do this in a small way and, and learn by doing.

[00:14:31] Sherida Morrison, MS, MA: Yeah, and I would add too, just recently in March, we hosted a learning exchange in the Bronzeville community that was attended by over 60 community organizations and academic researchers, just to have them in the room together to hear a presentation from one of our seed grantees facilitating research on the impact of programming services for black girls, by a Northwestern, researcher and a community-based organizational leader. And for people to see that and then to talk about what the partnership building stages were like, going to coffee shops and talking and learning and the professor from Northwestern coming into the community to actually learn more about the organization, to meet the girls, to have conversations with them before the research even started. And so how does that inform how we even designed research? We're not looking at data as numbers, but we're reminded of the girl that spoke at that session that I attended or who welcomed me when I entered the room. And so now, these numbers represent faces, they represent people. The data and the research, it means so much more now because I've made a human connection. That's one of the most important things that I would love to see as a shift in terms of research: making human connections. And so, events like the learning exchange allow for that dialogue to happen in real time. One of the wonderful things that happened at our last learning exchange is that one of the academics was talking to a community organization leader, and she mentioned that she had been working on a survey. This had absolutely nothing to do with our event, but the researcher said, Hey, pull it out. Let me take a look at it. Here is a community member who's been working on a survey talking with a researcher at a table, and this person is providing some real time capacity building. That's what this is all about. There are the goals for tenure and goals for publications and goals the community organizations have for funding and to expand services and scale and all of that, but at the end of the day, we are all working towards a common good, and that is what brings us together or should bring us together.

[00:16:36] Jen Brown, MPH: Another big portion of ARCC's work is to work on institutional and structural changes within the research enterprise to support this approach. And many of our community partners get involved related to a certain topic, violence prevention, kids, asthma, support for caregivers of people living with Alzheimer's or other types of dementia, but once they get involved with research, they also sometimes are asking questions about why do we do it like this? ARCC is one part of Northwestern, or the research enterprise; I want to be at decision-making tables at NUCATS, within the National Institutes of Health, within the Patient-Centered Outcomes Research Institute, so that community leadership is not about a single project. But again, for research to fully realize its impact on addressing inequities, we need transformation to a more community-driven enterprise. Not just a project here, a project there.

[00:17:29] Erin Spain, MS: Well, let's talk about that a little bit. What do you envision for the future of community-based research? How can you transform this and make it happen?

[00:17:38] Jen Brown, MPH: I'm so glad you asked about that because right now the term that's mostly used is "community-engaged research," but there's a lot of reflection within the field about the need to switch from thinking about "community-engaged" or "community engagement" to "community-driven" or "community-led," because the concept of engagement continues to hold the power within institutions and says, Oh, should we engage? How much should we engage? Who should we engage? How should we engage? Instead of the recognition that the power and the leadership needs to come from communities. And so again, thinking about what are the structures, what are the changes in process and funding that needs to allow that to happen? So for example, at NIH and at PCORI [Patient-Centered Outcomes Research Institute], they both have funding opportunities, for the first time, where the funding goes directly to communities that have researchers engaged instead of the funding going to researchers and having communities engaged.

[00:18:31] Sherida Morrison, MS, MA: I'm going to go big here. I want to see spaces in community. I want to see research centers where community can come and say, Hey, this is a problem or an issue that we'd like to address. You can go into a room and there are researchers there, there are human design practitioners there to start teasing this out with you, to start reimagining, to start ideating with you and other community folks that are with you. So these pop-in centers where relationships are not only being brokered, but forged and developed and taking us to another place where things are centered and grounded where they need to be, which is among the people. And so I would love to see Northwestern's name on a building somewhere in community where these types of conversations, this type of research design, you can walk in and you can see rooms all the way down the hallway where people are gathered and collected and asking questions and whiteboards and paper and markers and all of those things, and community can leave the re saying, I have the capacity to begin to work on creating solutions in our community and knowing that there is a support center that has their back.

[00:19:46] Jen Brown, MPH: That's so important too, that physical presence, like so often we hear from community partners about the importance of showing up and we had some discussion with community leaders a number of years ago where one of them talked about what it felt like if they have to leave their community to access something, like how that made them feel about their own community and the meaningfulness of when it's not this, we have to come to you, you're coming to us and you value us in that way. We may hear back from a lot of people about, Oh, you want me to be a research participant, but I can't be a patient. Or, You want me to be a research participant, but my child's not going to your university,you know,the meaning that that holds.

[00:20:24] Erin Spain, MS: I want to touch really quickly, if you could, on a couple of the community academic partnerships that have been established recently. You talked about the ARCC seed grant program that's been over $1.25 million in funding that has gone out to these partnerships. If you could just detail a project or two that really exemplify the work that you want to see continue

[00:20:44] Jen Brown, MPH: An amazing partnership Rob Simmons from the Oak Park Library and Ashley Knapp from Psychiatry have that is really supporting not only community leadership in research, but youth leadership in research in terms of developing technology and other types of mental health supports through the public library system. Another ARCC seed grantee a while ago was Dr. Judith Moscowitz, who's been working with the Ready Program at Heartland Alliance about supporting mental health of those that are working in the community violence intervention space. I think with both of those partnerships, there was a lot of emphasis on those early stages of relationship development and really thinking about what in the design of the relationship and the design of the project would allow communities to lead in terms of the different aspects of the research process, but also for the research to have concrete community impact, even while the research is still going on. Because, as you mentioned, research itself can take a long time in terms of getting funded, getting published. So thinking about not only the greater impact through the end, but also how can we real time be building capacity, providing services.

[00:21:57] Erin Spain, MS: As we wrap up today, if there is an investigator listening and they have not embarked on community-engaged research or community-based research and they're interested in doing so, what's a piece of advice that you would give them?

[00:22:09] Jen Brown, MPH: I'm so glad that you asked that question, because some community partners have told us what they would like us to say to an investigator like that. And for one, they would like the investigator to reflect and think about community before they start partnering and as they start partnering. One thing that we've heard over and over again from community partners is researchers are very prepared to do research, but researchers are often not prepared to partner. They would never start a research project without doing a literature review, but they might think about reaching out to a partner without putting that same investment into learning about a community, and that's a sign of respect to the community. If you take the time to ask yourself, what do you know about communities or patient groups that you're thinking about wanting to partner with? How can you invest in a little bit of learning about what services are already provided related to what you might be focusing on? Who's already doing research? What might have been their past experiences? What are the good restaurants that you can spend your dollars in to economically support their community throughout a potential collaboration? And they've also asked the researchers to think about what do you know about yourself? How have you reflected on your own identities, your biases, your potential positionality related to the work that you're doing, why you're doing this work? So really taking the time to reflect on yourself, your understanding, your history, your institution's history, your discipline's history, that matters. And then what resources will it take to do this work? You know, coming in thinking about what's going to be in it for possible community partners? What kind of funding will I need? What kind of staff support, what kind of mentorship or community of practice so that I can do this work in a reflective, as Sherida said, human-centered, empathic way.

[00:23:51] Sherida Morrison, MS, MA: Beautifully said. The only thing I would ask is, I would say to that researcher, What is the research legacy that you want to leave here on this earth? Is it transactional or is it transformational? Are you okay with having multiple publications that sit on a research database that maybe some graduate students or others may cite in a report, get your tenure and present at conferences all over the world? Or is legacy more deeply about the transformation that happens about those who you have been studying? If you could have the opportunity to have that type of legacy, you mean to tell me you wouldn't jump at it?

[00:24:32] Erin Spain, MS: I think you've given our listeners a lot to think about and there's so many resources available, so hopefully the next step will be for people to get in touch. Tell me a little bit about that first step that people can take. What do you suggest they do?

[00:24:45] Jen Brown, MPH: Come to our websites. Both of them are easy to remember. Our main website is www.ARCCOnline.net, and we have an online resource directory where the search box works pretty well: www.ARCCResources.net. But we really hope that you'll, as we've said about this approach to research, I hope that you'll come out in person and engage and connect and meet people. We hold learning exchanges two times a year, always in community settings, so come connect with us and with community partners.

[00:25:14] Erin Spain, MS: Thank you, Jen Brown and Sherida Morrison, for coming on the show and sharing your stories and the story that's taking shape here at Northwestern through ARCC and NUCATS and the Center for Community Health. So thank you so much for your time today.

[00:25:27] Jen Brown, MPH: Thanks for having us.

[00:25:28] Sherida Morrison, MS, MA: Thanks, Erin.

[00:25:29] Erin Spain, MS: Subscribe to Science and Translation wherever you listen to your podcast. To find out more about NUCATS, check out our website, NUCATS.northwestern.edu.