Discussion Guide and Transcript
Episode Six
Research Ethics Reimagined Episode Six “Connecting Communities and Researchers with Caleila Burrell, Allison Rusgo, and Amy Carroll-Scott, PhD”
- In this episode of PRIM&R's podcast, "Research Ethics Reimagined," we explore the Promise Zone Research Connection (PZRC) and its Community Research Review Board (CRRB) in West Philadelphia. Our guests are Caleila Burrell, Project Coordinator for the PZRC and West Philadelphia resident; Allison Rusgo, Associate Clinical Professor at Drexel University and doctoral candidate at the School of Public Health; and Dr. Amy Carroll-Scott, Associate Professor and Chair of the Department of Community Health and Prevention at Drexel Dornsife School of Public Health. (Transcript available) Listen on Spotify | Listen on Apple| Listen on Amazon Discussion Questions
- 1.) Community-Led Research Review
- Carroll-Scott explains that traditional IRBs are not set up to assess community-level risks or track geographic concentrations of research. How might research ethics review processes be adapted to address these community-level concerns?
- Burrell describes the CRRB as a way to use "research as advocacy." How might this approach to research review and community engagement impact the relationship between researchers and communities?
2.) Building Trust and Partnerships
- The PZRC and CRRB work to build relationships between researchers, community-based organizations, and residents. What strategies have they found effective in fostering these connections and building trust?
- Rusgo mentions that the CRRB has developed its own evaluative criteria for reviewing research proposals. How might these community-developed criteria influence the way research is designed and conducted in the Promise Zone?
3.) The Future of Community-Engaged Research
- Carroll-Scott describes how researchers who engage with the CRRB early in their process receive valuable feedback that improves their grant applications. What institutional changes might help encourage earlier researcher engagement with community review boards?
- As more Community Research Review Boards are established, what challenges and opportunities do you foresee in integrating these bodies into the broader research ethics landscape?
Key Terms and Acronyms
Promise Zone: A federal place-based initiative designated by the Obama administration to address challenges faced by people living in deep and persistent poverty.
Community Research Review Board (CRRB): A community-led body that reviews research proposals to ensure they benefit and protect local residents.
Community-Based Participatory Research (CBPR): A collaborative approach to research that equitably involves community members in all aspects of the research process.
Institutional Review Board (IRB): A committee that reviews and monitors research involving human participants to ensure ethical conduct.
Community Research Review Board (CRRB): A community-led body that reviews research proposals to ensure they benefit and protect local residents.
Community-Based Participatory Research (CBPR): A collaborative approach to research that equitably involves community members in all aspects of the research process.
Institutional Review Board (IRB): A committee that reviews and monitors research involving human participants to ensure ethical conduct.
Additional Resources
- Promise Zone Research Connection - Information about the PZRC at Drexel University.
- Community-Campus Partnerships for Health - Organization promoting health equity and social justice through partnerships between communities and academic institutions.
- Urban Health Collaborative at Drexel University - Research center focused on improving health in cities.
- PRIM&R's Research Ethics Timeline - A resource for exploring the milestones of research ethics.
Transcript
Transcript, Ep6: “Connecting Communties and Researchers with Caleila Burrell, Allison Rusgo, and Amy Carroll-Scott, PhD”
Host: Ivy R. Tillman, EdD, CIP, Executive Director of PRIM&R
Guests: Caleila Burrell, Allison Rusgo, and Amy Carroll-Scott, PhD
A transcript generator was used to help create written show transcript. Written transcript of podcast is approximate and not meant for attribution.
Ivy Tillman: Today, I'm very pleased to have the Promise Zone Research Connection with us. Caleila Burrell is a West Philadelphia and Promise Zone resident. She's also the project coordinator for the Promise Zone Research Connection. She supports the daily operations of the PZRC, as it's known, and its Community Research Review Board, and leads its outreach initiatives.
Caleila’s journey into advocacy began while serving on the board of a local parent teacher association where she advocated for enhanced educational resources and increased parental involvement in school activities.
Before joining PZRC, Caleila also worked in community facing roles as an income maintenance caseworker, where she assessed clients social services and employment needs.
We also have with us Allison Rusgo, an associate clinical professor in the physician assistant department at Drexel University's college of Nursing and Health Professions. She's also a doctoral candidate at the School of Public Health. Allison's dissertation focuses on the use of community based participatory research approaches to address power inequities in research within communities of color.
Amy Carroll-Scott is also joining us on today's podcast.
Dr. Carroll-Scott is an Associate Professor in the Department of Community Health and Prevention at the Drexel Dornsife School of Public Health. Her research focuses on understanding and addressing urban health inequities and underlying social inequities.
Today, we're going to explore the mission of the Promise Zone Research Connection, which is focused on working with communities in West Philadelphia and improving the trustworthiness of research and the research enterprise. They are federal place-based initiatives designated by the Obama administration to address challenges faced by people living in deep and persistent poverty.
The West Philadelphia Promise Zone, which your group works with directly, was designated in 2014 and is now one of 22 Promise Zones that serve urban, rural, and tribal areas across the United States.
Caleila, as a resident of this neighborhood in Philadelphia, can you share from your perspective, number one, your entry into research is fascinating, right? And your advocacy work particularly, but can you share with us why a community research review board of this kind is needed and what problems are being solved within the community?
Caleila Burrell: Yeah, thanks. That's a great question you pose. I think, from an advocacy background, you try to find ways that you can make changes in your community and how you can make things better. Rarely do you ever consider research as being that kind of changing point, that paradigm shift. And so when I stumbled across research in the CRRB, it was almost a no brainer as to how we can continue to advocate for ourselves within the research world. To change not just one dynamic, not just poverty, or food insecurities, but social injustices as a whole. By having a say in empowering residents to take more of a say as it pertains to research. I know just from my perspective as a community member, you feel like sometimes doctors shove research down your throat, you know. It's, you know, I don't have a cure for your ailment, but here's research on something else that you should participate in, and maybe we'll figure it out.
I think my role, in addition to helping sustainability, my role is also to educate community residents, those that don't think about research and how we can use that to get those changes we'd like to see in our community.
So, the CRRB is the first step in that right direction to help change those social injustices. And our CRRB members are mostly community members, some institutional, but mostly community members who sit on other boards, nonprofits that work in the community. So, they're also doing outreach, as well.
I think when we meet with community members, we have to get them to understand, “Hey, we don't come with boxes of food or programs. We come with information that is really, really valuable to change systems that are in place.
Ivy Tillman: Wow. I'm going to probably say the word wow throughout this conversation because the work you're doing is a model. And it touches on so many areas, particularly Caleila, when you said, “research as advocacy.” So, what you've done is use research as another form of advocacy. And oftentimes we don't talk about that a lot, particularly in community engaged or community based participatory research from a regulatory perspective, right?
Really important. I want us to kind of talk about a large issue. But particularly, I'm curious as to how you see this Community Research Review Board working to improve trust in this community.
Caleila Burrell: I think that because our CRRB members are already community members, there's a base level of trust.
Information is received differently when you receive it from your next-door neighbor or your grandmother's grandchild, you know, it's just received differently. There's a base level of trust. This West Philadelphia Promise Zone has a large history. It also includes the Black Bottom, which I don't know if you're familiar with, but there was a large, I guess, push for, institutions in that area and push out of community members who came to Philadelphia to have a better lifestyle, right?
So, a lot of these, a lot of our current residents are either grandchildren of that push or they just have an overall distrust of institutions and researchers, you know, that research or scientists, it's almost like they know you're not one of us, you know? So by having a CRRB, it's almost as though, community residents who we speak to are, they know we're going to represent you and represent your interests. I think that the more we educate them on research and what we know of research, the more they'd be willing to hear it. So, the more we're out in the community, the more we're talking about, “Hey, we discovered a new way to, change systems and a new way to advocate we're not protesting anymore. Let's get a research study done to see how we can get more food in our communities, more grocery stores.” I think that as we break it down like that, people are willing to listen because we are already a trusted source. It's better for them.
Ivy Tillman: So, one question I have as it relates to the CRRB, I like that acronym, by the way, with the CRRB, are they the ones that I know it has to get separate IRB approval, as well. So, are they the ones that basically, for lack of a better term, sign off or endorse the research that's being done within that Promise Zone area?
Amy Carroll-Scott: This is a community that has a lot of mistrust of research and of researchers and of research institutions.
There's been a lot of initiatives and programs that have come through and promised to improve community health or education or housing. Sometimes they come with researchers as well to either assess current conditions or to evaluate whether or not those programs or initiatives have worked. And the community feels like the research has never included them.
So, they feel like the wrong questions are being asked and the wrong answers are thus being generated. So, what they're trying to do is conduct outreach to research institutions and start to invite them into the community.
The researchers who've come to the Community Research Review Board and brought their research, either because it's in development or because they've already received funding and are about to do recruitment, we have found that they benefit greatly from meeting with the review board.
The review board asked them if they had a community engagement plan, and if they didn't, they provide suggestions for how to reach out to community leaders, neighborhood civic associations, and other anchor institutions in the community in order to appropriately reach and authentically engage the trusted leaders who can help them to recruit participants for their study.
They also give lots of great feedback about how to bring results back to the community, to make sure that the, what is learned is shared with the community as well and not just kept within, you know, the ivory tower and in the researcher's institutions. And so we've been conducting an evaluation of, researchers who've come to review boards and the feedback from them has been very positive.
Our challenge now is to try to get the word out so that researchers come earlier in the process. Those who do find that the feedback they get greatly improves their application for funding. We also are able to give a letter of endorsement to, uh, for them to include in their grant proposals. And we find that it becomes a much more collaborative experience.
And so, we are hoping that the experiences of those researchers who come earlier in the process can spread word of mouth and that others will do the same
Allison Rusgo: And interestingly enough, so the group, when they first formed, they created their own evaluative structure and they determined what was going to be most important to them when reviewing proposals, and it's actually been an iterative process as they've done more sessions with researchers to really figure out what that criteria is and what's most meaningful. So, I'll touch briefly on some of those criteria. They've come up with five so far. One of which is community engagement.
So, looking at a proposal to see, has the researcher, the research team engaged with community stakeholders? Before creating this proposal before drafting their work what, evidence does the researcher, the research team provide that this study is pertinent to the community and sort of dovetailing off of that is what are the clear and tangible benefits to community residents?
Is it going to bring employment or job opportunities? Is it an intervention that's benefiting residents? So really making sure that it's not just research done for research which I think is really important as well. As well as what is the evidence that there's been community input in forming, formulating or creating the research question or the research. The design or the methods that the team is going to use? That's been a big, some of the big questions that they ask. And lastly, cultural humility. Is there evidence that the proposal reflects efforts to really understand the community's values? And most importantly are the researchers having procedures in place to ensure that they are treating all of the participants with dignity and respect.
Once they go through those five criteria, then they may endorse, approve, conditionally approve a project and then they're going to convey that to a research team accordingly.
Ivy Tillman: Wow. I say, 'wow', because it's enlightening to understand what the criteria are and how those are probably communicated to researchers. I come from an IRB background. So now I'm thinking about, you know, how are those criteria then communicated or are they communicated to the IRBs that end up reviewing those studies?
Allison Rusgo: That's a great question, and that's something to that a lot of our outreach work is really aiming to achieve, really helping IRBs and other members of office research protections and other folks in that domain to understand how they can iterate their processes, their submission or protocol forms to consider these elements. Or at least come and say, it would be wonderful if community placed research or research that's going to engage community members have been endorsed by a CRRB and provide us with that letter.
We've been fortunate where some of the researchers that we've worked with have actually received endorsement letters from the CRRB and then either submitted that to an IRB or submitted that to a funder when they are submitting their proposal.
Amy Carroll-Scott: There's a researcher who has been doing research on brain and related mental health issues who had previously only done this work in a clinical setting.
And understood that the educational and the interventional programs that he was creating would be much more effective if he brought them to the community, but he had never tried to work with community-based organizations, or, you know, do his work more on the ground in a community. He had heard about us word of mouth through our outreach efforts and came to us in a development process. As a result, he's been going to neighborhood civic associations and neighborhood dinners. Folks know him by name. And he's been incorporating that understanding, that knowledge of where the folks who would most benefit from his program gather naturally or where they live, so that he can focus his research on that. And so we've been providing him with the kinds of supportive documents, and information for his various grant writing.
Ivy Tillman: You mentioned educating the community members about research.
What does that look like? And can you give me examples of topics, specifically, not necessarily about recruitment for a study, but really educating on research.
Caleila Burrell: I think community, the community-based organizations are the easiest to educate on research because they're the ones that have programming that they're bringing to communities and they're also a trusted source for community members. Educating community-based organizations on partnerships with researchers to help evaluate their programs and change their programs for the better of the community in partnership with the CRRB. I think that helps everybody as far as community-based organizations and community residents understand how research can be impactful, but our everyday residents don't don't need to deal hand in hand with research as much as our community-based organizations do.
I know Alison spoke to our partnerships with researchers, but we also want to let community-based organizations know that, hey, yes, you have programming, but there are other ways to work with a researcher, with their programming. Because while community-based organization may be helping kids stay off the street and helping prevent gun violence, a researcher can come and research that program to see if it is actually doing the thing that they are intending. So there are different prongs here to the PZRC. We do have that researcher outreach, which I know we're here to discuss, but there's another level of bridging that gap between community-based organizations and community residents to the research itself, that needs to occur that hasn't occurred. Which is why our area has been over-researched. Which is why we've given our kidney 50 times, and we no longer have a kidney to give. You know, but yes, we want to end those things and we almost want to take each, part, each group of people's hands and say, “Hey, you guys need to talk.”
Ivy Tillman: It's that partnership with the community-based organization.
I find the most interesting because in conversations, we don't hear a lot about that, but they're really the conduit to the community. Right. Are you seeing that happen?
Allison Rusgo: Yeah, absolutely. I think and I would say Caleila has done a fantastic job in her role. She is out spearheading a lot of the outreach around these efforts and really being a bridge between. Managing all the moving parts to engaging with these folks. It can be hard to locate contact information, just all the logistics that go into that.
I think that a lot of time when researchers come to the CRRB, that's one of the questions that they ask. What is your community engagement plan? And what is your dissemination plan? And that's a piece that may not be something that an IRB is going to focus on in the protocol submission process, but it's something that, adjunctively the CRRB is going to be looking at and oftentimes the CRRB will suggest to a researcher that that's really an improvement to their protocol.
So, going back and looking at their design, looking at what they've built and saying, well, how are you going to engage with a community partner? Have you done so to really make sure that that research is going to be relevant to them? That's a big part of CBPR community-based history research as well.
Is that research relevant to the community? Are the solutions that you're proposing feasible to the community members? Are they going to be interested in those efforts? So, they really are, as you shared the conduit to reaching community members. Many of our CRRB members are leaders in those organizations throughout West Philadelphia. They've also been excellent resources to disseminate that information accordingly and build trust again,
Amy Carroll-Scott: In creating the PZRC and its Community Research Review Board, I was helping community residents to understand what IRBs are good at and what IRBs miss. One of the things that emerged is that IRBs are set up to minimize risks to individual participants and research. They are not set up to understand community level risks. What does it mean when a community-based organization endorses a researcher and partners with them, and then that researcher does not behave in a way, that reflects well on that organization.
Or a researcher is coming in to do research that's been conducted recently. Folks have a memory of that survey or of those focus groups or of that study that recently came through. So, the community is left feeling like, well, these researchers aren't talking to each other. That got us thinking that, well, because IRBs are not required to talk to each other. So, what we decided to do was to conduct a study of IRBs in Philadelphia to find out how much they're even tracking geographic location or neighborhood location of the research that researchers are conducting.
And it was quite clear that they're not set up to do that. As a result, they don't use that information to review a proposed study. So, for example, if, a study of food insecurity is being proposed to occur in the neighborhood of Mantua in the Prama Zone area of West Philadelphia, and it's being proposed by a Drexel researcher.There's no one on that review committee who has any idea how many studies are currently being conducted in Mantua or how many of them might be related to food insecurity. The community sees that immediately because oh, here's another food insecurity survey coming around giving us gift cards. , but the IRBs are not set up to include that burden or that overlap or that duplicative nature of research at the review level.
So that's why it makes sense. And actually, a lot of our IRB champion partners agree that when the community has that context and can provide it to researchers and work in partnership with IRBs that may be the best-case scenario. It would be great if IRBs could track that and incorporate it into their review, but perhaps with a resourced, a very well-established community research review board in these neighborhoods that experience the most inequities and as a result are the most overstudied. Those community research review boards run by community members can provide that context to researchers and research institutions.
Ivy Tillman: Wow. This is fascinating, fascinating model you have.
So if we back up to the researcher who has this idea to conduct a study, and I love the concept you mentioned Caleila about the effectiveness of community based organizations programming right and how they can partner with researchers on that but so you say you have a researcher who wants to come in and conduct a study. Can you walk us through a process that a researcher would typically experience when engaging with the CRRB for their study?
Allison Rusgo: Basically, it begins with let's say through word of mouth or other dissemination efforts that we can talk about as well, a researcher is interested in our area. They're basically going to begin by filling out a survey that the CRRB members along with the PCRC created as a way to understand what the researcher needs.
Are they looking for help with that? Are they at the idea phase and they need help creating their research design. Are they all the way through and they're more looking for assistance with community partnerships or participant recruitment? So just to get a sense of what they need so that the CRRB PZRC can help them best.
And once that gets to the CRRB members and the CRRB member leadership, they're going to ask the researcher to prepare materials. Taking an extra step to look at their proposal and make it translated, jargon free and easily understandable. Then it’s given to the CRRB members to review ahead of time.
Then there is a session with the CRRB member, equip members and the researcher. We've done both virtual and in person, just given the times that we're in. But the group, I will say researchers included from feedback that we've received, they really enjoy being in person. That connection that you build when you're not in a zoom box, if you will. It's quite meaningful. Folks have shared that. That's kind of a preferred way to engage. So the research team will come and talk to you. Uh, present their project and then I'll say the whole session is led by a CRRB facilitator. That's one of the more senior members of the CRRB who has taken on this role and who basically is in charge of running the evening or running the session. That person has done an excellent job keeping everyone on track, making sure everyone has a chance to share their ideas, what have you.
Then the CRRB members have a chance to ask questions of the researcher. Some are structured questions that we ask. So all researchers have a similar experience. But then they're going to get more into the nitty gritty as they've read their proposal ahead of time. They want to ask specific questions. At that point in time, the researchers leave the room just from a logistical standpoint. The CRRB members have a chance to discuss in a closed-door session, looking at some of the criteria that we were speaking about earlier. Then they'll fill out comment cards, just to kind of capture all the feedback to share with the researcher. The researcher returns, and then the facilitator shares a brief snapshot of what was discussed to kind of give the researcher that in the moment feedback.
Following that meeting, we compile all of the comment card, written feedback, other ideas or suggestions or resources that maybe a CRRB member mentioned they'd like to share with, with the researcher. And then that is sent to them along with an evaluation because there's always evaluation and data collection in our work. We also do some feedback surveys to both the CRRB members and the researchers, just to really understand what's working, what can we still continue to improve upon, and how do we mitigate those gaps.
Ivy Tillman: So if we consider the environment now that this, the CRRB has created within this promise zone of, Mutually beneficial research. I want you to Caleila to tell us about what it was like prior to the CRRB, right? How was research conducted prior to your involvement? You kind of mentioned it a little bit and what is it like now?
Caleila Burrell: Prior to the CRRB being formed with the promise zone designation, there were a lot of researchers coming to, evaluate our current systems, how, why things are the way they are, and then, you know, returning them back to their policymakers and, you know, people involved with the Promise Zone to try and try to make changes as it pertains to education and health and safety and all of these topics. I think community members began to get exhausted by that, you know, because this designation was a short period of time. It was, it was like an ambush, so to speak. and so the CRRB really came as a result of the Promise Zone, because this ambush occurred during that time. Once the CRRB realized that, hey, we're tired of doing research, the gift cards are no longer exciting, we're over this, these community members who sit on the PZRC board and subsequently the CRRB as well, have come together with, with the institution, with Drexel being a really good ally and the city of Philadelphia's assistance as well to come together to help rectify and remedy the situation.
And they had several meetings over a period of years and they decided that this CRRB will probably be the best model to assist with it.
Ivy Tillman: Interesting. Interesting how it came together. So was there a model, what prompted like this particular type of research review board? Are you aware of any other models throughout the United States?
Caleila Burrell: There have been meetings with Amy and the Bronx CRRB, who was a really good model for us to kind of mimic. They do things a little differently, but they are currently in existence. Pittsburgh. also has a curve, I believe, which has a similar model. We've been promoting and doing outreach there. We've come across the Flint CRRB in Michigan, who's doing very similar work as well.
The models exist. This is not a new idea. CRRBs have been around for ages. I think the sustainability of CRRBs, because although they've been around, it hasn't caught on to, to pop, research world, you know, right? It's not an idea that that can sustain itself. Funding is hard to get for it. Even our funding. We got it under the pretense that this was a new idea that will help change communities. So I don't think it's able to stick. And so with us, as we're trying to sustain over time, I think that's our big, that's our biggest draw, that'll kind of keep us around and be the model for CRRBs across America because most disenfranchised communities are being heavily researched. It's not just happening in the West Philly Promise Zone. And who's overseeing that? There are major cities that are experiencing gentrification and all of these things requires evaluation and research.
So having a CRRB and us being a model and being from a big city like Philadelphia and receiving this Promise Zone designation from Obama, I think all of the aspects were just in the right place for us to move forward. Then getting the grant money from the Bair Foundation also helped push us through.
We have institutional allies such as Drexel. They give us workspace. They allow us to use their buildings for events. They work really in close partnership with us to get this work done and to help change systems.
Ivy Tillman: So, it is definitely a partnership and collective, collaborative approach to sustainability.
So can we talk about the Community Research Review Board members briefly. How they came from the PZRC board and so forth. What type of training do they receive? How are they selected? Do you look for unique perspectives when you're considering someone to join the CRRB?
Allison Rusgo: Yeah, so all those things Ivy, so interestingly the PZRC has been meeting since about 2014, 2015. They always had in their mind that a big part of their mission aligned work would be creating this community research review board. Modeling it after others that you know exist or have existed throughout the country. The PZRC members created an application process. They thought about what would be most important for them in terms of what criteria would make somebody a great CRRB member. Some of those individuals did come from the PZRC board, but given how connected the PZRC members are they were able to disseminate that application widely throughout their community networks and faith-based networks, and civic networks.
On the application many of those questions were about their lived experience, their work experience, but mainly why the community, why the West Philadelphia community is so important to them. Cause a big piece of that was ensuring that folks either lived or worked within the West Philadelphia promise zone within the West Philadelphia community.
Community and diversity of ideas is a big thing. Diversity of thought. We do have folks who sit on the CRRB who are representing institutions but who are also representing different communities. Folks who are advocates for members who have disabilities, and other sort of special populations that folks really feel strongly about. Who they are really, really advocating for.
They created this application process, disseminated the applications to their networks, and then the PCRC members reviewed all the applications and then selected folks who they thought would be the best fit for the CRRB. They have self-governing bylaws and processes to think about the maximum number of members and all the necessary voting procedures and what have you.
They did all that work. Then there was some onboarding training that the members receive. Background about research in general, also information about IRBs and how the regulatory oversight process works. How a CRRB fits into that infrastructure, which I think has been really helpful for them.
Then all of the members along with the PZRC members are all CITI trained. So they've completed various modules through CITI to ensure that they have the necessary information to be able to review researchers protocols, and to do that successfully.
Caleila Burrell: I'd also like to add that their involvement with the CRRB and the PZRC also forces them to look at research in a different way. In ways they never have.
So, it's also a good strategy for the PZRC to have these members. We do have people that are interested. That want to be a part because, hey, I've never thought about it this way. So, they have to go through the processes and the steps, but it was really good. Just having this application and board process and these community members who've never looked at research in this way. It forces them to now see research in a social manner.
Ivy Tillman: You're engaging them in a different way and considering research more broadly, which is amazing. So, leading into that or thinking about that, Caleila, what do you consider some of the greatest accomplishments of the CRRB?
Caleila Burrell: Our relationship building with researchers. I think that is our greatest accomplishment.
We've had several researchers come back and update us on what they believe our endorsement has done for their study. In ways that we can work together to try to get systems changes. Although we have endorsed studies because there's not federal wide assurance. It doesn't always matter that they've been endorsed by a CRRB and that is part of a system that we are also trying to change.
We are not there yet, but I think our relationship building with researchers who are working within the CBPR model is our greatest accomplishment.
Ivy Tillman: Allison, what would you consider a great accomplishment?
Allison Rusgo: I think for me, one of the greatest accomplishments, just because I came to the PZRC in 2020 when I started my doctoral work, and I watched the group evolve PZRC. Then creating the CRRB and to where they are now. I think it's the skill building in the group. When they're sitting in a room with researchers who are presenting their proposals. Their ability to read those proposals and really pick out the information that's either there and celebrate it and champion, you know, those efforts, but also find areas to ask, “where can we strengthen this?” They will ask such poignant questions to the researchers, making many of the researchers think, wow, we didn't think about a dissemination plan. The IRB didn't require that. Our funder didn't require that. Why have you? Their ability to just not only to ask the right questions, but then convey that feedback to the researchers in a language that they can understand.
Some of the members will say, we have to speak researcher. We have to speak research language to really help folks in that area really understand why this work is important. I think that's been that's been a really fun thing to watch as well as to watch the group's progress. And again, they've continued to iterate their evaluation criteria as well and think about what's important to them.
So again, the group is fairly new. To be honest, they only launched in 2022. So they're also doing a collaborative self-evaluation over the next year. There are midway through that two-year process. So, they're evaluating themselves, which I think is really important. To think about impact. For me the knowledge and skill building and trust that the group has built has been really great.
Ivy Tillman: So you mentioned Allison, dissemination of results. Is there a requirement for each study to provide those results, or how is that done within the CRRB?
Allison Rusgo: So the CRRB, I wouldn't necessarily say it's an absolute evaluation criteria, but it is something that when they're going to read a proposal and engage with a researcher, they're going to look for, and they're going to ask, how are you going to share that information back to the members?
It's not just publishing in a journal, right? So, is it going to be through community forums or town halls? Is it through, a lot of, our work and Caleila has been helpful with this and Amy as well, of course, is around community briefs and we've done some of the PCRC has done some community briefs around, some of the work that they did when they were engaging with IRBs through, through a collaborative grant writing study or process that they did. So I think that the dissemination piece is important and they're going to ask about it. Again, it's not something that many of the researchers who come to the CRRB have thought about. So it's been a good opportunity for the community members to provide suggestions about how they would like to see the results come back to them.
And I'll say anecdotally, we've had one of the researchers that's engaged with the CRRB has come back multiple times. So they came early on in the study design process, which is great. And the CRRB was able to help them. This team formulate their work. And then throughout the process, this research team was really excited to keep it to return and share a few times the work that they had done.
And the CRRB members look forward to that and are really hopeful that as they continue their work. that they really see a researcher come full circle, which we haven't yet to be fair, the CRRB hasn't been working long enough to see the whole process, but to where a researcher comes in the design phase continues to meet with them and then completes their investigation and comes back to share the work.
I think that that's a vision that I've heard some of the CRRB members share that they're looking forward to.
Ivy Tillman: Sure. I could see that. So if we consider engagement of the broader community within West Philadelphia, like, do you do any work around that? Or Caleila, can you share as a resident, what's really the most important thing to consider when doing community engagement or public outreach?
Caleila Burrell: We do do outreach outside of the West Philadelphia community. Philadelphia is big, but it's also small in the same sense. And we have several institutions, we have Temple, which is in North Philly and, we have a few institutions in West Philadelphia, which is why I think it was important to start this CRRB here in West.
But yeah, so we do community events, right? We were just at a jazz festival this past weekend., and we took our outreach team there and they kind of spread out. They engaged with community based organizations that were present. Politicians were present who they engaged with and community residents, you know, our everyday residents that attended this festival who want to know what is this? Who are you? Why are you here?
And so that's our model for outreach to show up at community events where we can meet community based organizations who represent residents that are also present. And that has worked, we've run into some citywide nonprofits or community based organizations that are interested in working with researchers, but don't know how.
And we kind of had that information, you know, because researchers are coming to us to get their information review. So, I think, as we go along, we're finding new ways to kind of reach each party from different aspects and right now the community based events because it's summertime and everyone's outside is the best and easiest way.
We'll also have a team that'll go to our community based organizations, community meetings to speak with community members in that regard as well. So that they know we're here. And if they have any questions regarding research or they want information on how to connect with researchers, we're that resource for them.
And we're very unique in that way because there's, there's not another organization that can do that, at least in the Philadelphia area.
Ivy Tillman: Right. So. It's, I see it like a triangle, almost. I see the CRRB kind of serving to connect the researchers, to connect the community. How do you connect with the IRBs? And if there's any, interface with them, and how do you educate IRBs on the principles of community based participatory research, the ethics associated, and so forth?
Caleila Burrell: So we had an outreach plan for that where we had contact information for a lot of the IRBs from the study that was done, a community engagement study that was done that the PZRC won grant money to conduct. So we had a lot of contact information for IRBs already. And we also had kind of received contact information for office of human, human research protections, and so, just reaching out to them, explaining who we are, why we exist, and saying, Hey, we're, we're open to working with you guys and collaborating.
We've received a lot of feedback from that. A lot of departments within research institutions that are looking to do more community engaged work have reached out and said: Hey, we, we never knew you guys existed. Let's sit at the table and see ways that we can collaborate.
I think more institutions on a smaller level are trying to get their students to engage with communities. But we want to go a step up and get the IRBs to change their systems; don't just include one community resident because one community resident doesn't really equate to community because we're diverse in that essence.
But we already have the If you'd like to partner with us, we can eliminate your need for needing a whole, just one resident, you know, because we have that. I mean, this is why we do the letter of endorsement. And just trying to get systems changes.
Now, we all know that that doesn't occur overnight. Right? But the more we show up and the more they see us, there will become a need, a greater need, and they'll need us. And so, we're trying to sustain until we get to that point, so that we can be engaged more. And, and we all want the same changes, right?
Researchers want more effective research, and community members want systems changes within their communities. If we can learn to work together, or maybe we just need that street that connects us, which is the PZRC, that should help change over time.
Amy Carroll-Scott: I think for folks to tackle something like a community research review board, it's important to tap into the very real mistrust and sometimes trauma and fear that communities of color have around research and to demonstrate how research can be transformative when communities have power and ownership over the data and the research that's collected in their community.
We know that data and research drives funding decisions and programmatic decisions and investments. So once folks have the ability to see what the other side of that experience looks like, it can be very transformative and folks can get very passionate about it.
But I think it's important to understand that it's a slow systems change. And finding folks who are interested in it in the long haul is really important.
Ivy Tillman: I think this is a great place for us to kind of conclude our conversation. I'd love for us to maybe have another, maybe in a year or so come back. Because you said that you've, it's been since 2022. That this group is formed. I'd love to hear kind of where you're where you are in ‘25 and some of the vision that that you have for ‘25. But thank you for joining us today. The insight that you provided, but also just the passion and the energy that you bring to the work is most important.
The relationships that you're building and serving as that conduit so important to really advancing trust and science and research. So we thank you very much.
PRIM&R: Thank you for listening to Research Ethics Reimagined, a podcast created by Primer and produced by Syntax in Motion. Please subscribe and share with your friends and colleagues. To learn how to become a member of Primer, please visit us at www.primer.org, be sure to join us next month as we continue our conversation with scientists, researchers, bioethicists, and some of the leading minds exploring new frontiers of science.
Caleila’s journey into advocacy began while serving on the board of a local parent teacher association where she advocated for enhanced educational resources and increased parental involvement in school activities.
Before joining PZRC, Caleila also worked in community facing roles as an income maintenance caseworker, where she assessed clients social services and employment needs.
We also have with us Allison Rusgo, an associate clinical professor in the physician assistant department at Drexel University's college of Nursing and Health Professions. She's also a doctoral candidate at the School of Public Health. Allison's dissertation focuses on the use of community based participatory research approaches to address power inequities in research within communities of color.
Amy Carroll-Scott is also joining us on today's podcast.
Dr. Carroll-Scott is an Associate Professor in the Department of Community Health and Prevention at the Drexel Dornsife School of Public Health. Her research focuses on understanding and addressing urban health inequities and underlying social inequities.
Today, we're going to explore the mission of the Promise Zone Research Connection, which is focused on working with communities in West Philadelphia and improving the trustworthiness of research and the research enterprise. They are federal place-based initiatives designated by the Obama administration to address challenges faced by people living in deep and persistent poverty.
The West Philadelphia Promise Zone, which your group works with directly, was designated in 2014 and is now one of 22 Promise Zones that serve urban, rural, and tribal areas across the United States.
Caleila, as a resident of this neighborhood in Philadelphia, can you share from your perspective, number one, your entry into research is fascinating, right? And your advocacy work particularly, but can you share with us why a community research review board of this kind is needed and what problems are being solved within the community?
Caleila Burrell: Yeah, thanks. That's a great question you pose. I think, from an advocacy background, you try to find ways that you can make changes in your community and how you can make things better. Rarely do you ever consider research as being that kind of changing point, that paradigm shift. And so when I stumbled across research in the CRRB, it was almost a no brainer as to how we can continue to advocate for ourselves within the research world. To change not just one dynamic, not just poverty, or food insecurities, but social injustices as a whole. By having a say in empowering residents to take more of a say as it pertains to research. I know just from my perspective as a community member, you feel like sometimes doctors shove research down your throat, you know. It's, you know, I don't have a cure for your ailment, but here's research on something else that you should participate in, and maybe we'll figure it out.
I think my role, in addition to helping sustainability, my role is also to educate community residents, those that don't think about research and how we can use that to get those changes we'd like to see in our community.
So, the CRRB is the first step in that right direction to help change those social injustices. And our CRRB members are mostly community members, some institutional, but mostly community members who sit on other boards, nonprofits that work in the community. So, they're also doing outreach, as well.
I think when we meet with community members, we have to get them to understand, “Hey, we don't come with boxes of food or programs. We come with information that is really, really valuable to change systems that are in place.
Ivy Tillman: Wow. I'm going to probably say the word wow throughout this conversation because the work you're doing is a model. And it touches on so many areas, particularly Caleila, when you said, “research as advocacy.” So, what you've done is use research as another form of advocacy. And oftentimes we don't talk about that a lot, particularly in community engaged or community based participatory research from a regulatory perspective, right?
Really important. I want us to kind of talk about a large issue. But particularly, I'm curious as to how you see this Community Research Review Board working to improve trust in this community.
Caleila Burrell: I think that because our CRRB members are already community members, there's a base level of trust.
Information is received differently when you receive it from your next-door neighbor or your grandmother's grandchild, you know, it's just received differently. There's a base level of trust. This West Philadelphia Promise Zone has a large history. It also includes the Black Bottom, which I don't know if you're familiar with, but there was a large, I guess, push for, institutions in that area and push out of community members who came to Philadelphia to have a better lifestyle, right?
So, a lot of these, a lot of our current residents are either grandchildren of that push or they just have an overall distrust of institutions and researchers, you know, that research or scientists, it's almost like they know you're not one of us, you know? So by having a CRRB, it's almost as though, community residents who we speak to are, they know we're going to represent you and represent your interests. I think that the more we educate them on research and what we know of research, the more they'd be willing to hear it. So, the more we're out in the community, the more we're talking about, “Hey, we discovered a new way to, change systems and a new way to advocate we're not protesting anymore. Let's get a research study done to see how we can get more food in our communities, more grocery stores.” I think that as we break it down like that, people are willing to listen because we are already a trusted source. It's better for them.
Ivy Tillman: So, one question I have as it relates to the CRRB, I like that acronym, by the way, with the CRRB, are they the ones that I know it has to get separate IRB approval, as well. So, are they the ones that basically, for lack of a better term, sign off or endorse the research that's being done within that Promise Zone area?
Amy Carroll-Scott: This is a community that has a lot of mistrust of research and of researchers and of research institutions.
There's been a lot of initiatives and programs that have come through and promised to improve community health or education or housing. Sometimes they come with researchers as well to either assess current conditions or to evaluate whether or not those programs or initiatives have worked. And the community feels like the research has never included them.
So, they feel like the wrong questions are being asked and the wrong answers are thus being generated. So, what they're trying to do is conduct outreach to research institutions and start to invite them into the community.
The researchers who've come to the Community Research Review Board and brought their research, either because it's in development or because they've already received funding and are about to do recruitment, we have found that they benefit greatly from meeting with the review board.
The review board asked them if they had a community engagement plan, and if they didn't, they provide suggestions for how to reach out to community leaders, neighborhood civic associations, and other anchor institutions in the community in order to appropriately reach and authentically engage the trusted leaders who can help them to recruit participants for their study.
They also give lots of great feedback about how to bring results back to the community, to make sure that the, what is learned is shared with the community as well and not just kept within, you know, the ivory tower and in the researcher's institutions. And so we've been conducting an evaluation of, researchers who've come to review boards and the feedback from them has been very positive.
Our challenge now is to try to get the word out so that researchers come earlier in the process. Those who do find that the feedback they get greatly improves their application for funding. We also are able to give a letter of endorsement to, uh, for them to include in their grant proposals. And we find that it becomes a much more collaborative experience.
And so, we are hoping that the experiences of those researchers who come earlier in the process can spread word of mouth and that others will do the same
Allison Rusgo: And interestingly enough, so the group, when they first formed, they created their own evaluative structure and they determined what was going to be most important to them when reviewing proposals, and it's actually been an iterative process as they've done more sessions with researchers to really figure out what that criteria is and what's most meaningful. So, I'll touch briefly on some of those criteria. They've come up with five so far. One of which is community engagement.
So, looking at a proposal to see, has the researcher, the research team engaged with community stakeholders? Before creating this proposal before drafting their work what, evidence does the researcher, the research team provide that this study is pertinent to the community and sort of dovetailing off of that is what are the clear and tangible benefits to community residents?
Is it going to bring employment or job opportunities? Is it an intervention that's benefiting residents? So really making sure that it's not just research done for research which I think is really important as well. As well as what is the evidence that there's been community input in forming, formulating or creating the research question or the research. The design or the methods that the team is going to use? That's been a big, some of the big questions that they ask. And lastly, cultural humility. Is there evidence that the proposal reflects efforts to really understand the community's values? And most importantly are the researchers having procedures in place to ensure that they are treating all of the participants with dignity and respect.
Once they go through those five criteria, then they may endorse, approve, conditionally approve a project and then they're going to convey that to a research team accordingly.
Ivy Tillman: Wow. I say, 'wow', because it's enlightening to understand what the criteria are and how those are probably communicated to researchers. I come from an IRB background. So now I'm thinking about, you know, how are those criteria then communicated or are they communicated to the IRBs that end up reviewing those studies?
Allison Rusgo: That's a great question, and that's something to that a lot of our outreach work is really aiming to achieve, really helping IRBs and other members of office research protections and other folks in that domain to understand how they can iterate their processes, their submission or protocol forms to consider these elements. Or at least come and say, it would be wonderful if community placed research or research that's going to engage community members have been endorsed by a CRRB and provide us with that letter.
We've been fortunate where some of the researchers that we've worked with have actually received endorsement letters from the CRRB and then either submitted that to an IRB or submitted that to a funder when they are submitting their proposal.
Amy Carroll-Scott: There's a researcher who has been doing research on brain and related mental health issues who had previously only done this work in a clinical setting.
And understood that the educational and the interventional programs that he was creating would be much more effective if he brought them to the community, but he had never tried to work with community-based organizations, or, you know, do his work more on the ground in a community. He had heard about us word of mouth through our outreach efforts and came to us in a development process. As a result, he's been going to neighborhood civic associations and neighborhood dinners. Folks know him by name. And he's been incorporating that understanding, that knowledge of where the folks who would most benefit from his program gather naturally or where they live, so that he can focus his research on that. And so we've been providing him with the kinds of supportive documents, and information for his various grant writing.
Ivy Tillman: You mentioned educating the community members about research.
What does that look like? And can you give me examples of topics, specifically, not necessarily about recruitment for a study, but really educating on research.
Caleila Burrell: I think community, the community-based organizations are the easiest to educate on research because they're the ones that have programming that they're bringing to communities and they're also a trusted source for community members. Educating community-based organizations on partnerships with researchers to help evaluate their programs and change their programs for the better of the community in partnership with the CRRB. I think that helps everybody as far as community-based organizations and community residents understand how research can be impactful, but our everyday residents don't don't need to deal hand in hand with research as much as our community-based organizations do.
I know Alison spoke to our partnerships with researchers, but we also want to let community-based organizations know that, hey, yes, you have programming, but there are other ways to work with a researcher, with their programming. Because while community-based organization may be helping kids stay off the street and helping prevent gun violence, a researcher can come and research that program to see if it is actually doing the thing that they are intending. So there are different prongs here to the PZRC. We do have that researcher outreach, which I know we're here to discuss, but there's another level of bridging that gap between community-based organizations and community residents to the research itself, that needs to occur that hasn't occurred. Which is why our area has been over-researched. Which is why we've given our kidney 50 times, and we no longer have a kidney to give. You know, but yes, we want to end those things and we almost want to take each, part, each group of people's hands and say, “Hey, you guys need to talk.”
Ivy Tillman: It's that partnership with the community-based organization.
I find the most interesting because in conversations, we don't hear a lot about that, but they're really the conduit to the community. Right. Are you seeing that happen?
Allison Rusgo: Yeah, absolutely. I think and I would say Caleila has done a fantastic job in her role. She is out spearheading a lot of the outreach around these efforts and really being a bridge between. Managing all the moving parts to engaging with these folks. It can be hard to locate contact information, just all the logistics that go into that.
I think that a lot of time when researchers come to the CRRB, that's one of the questions that they ask. What is your community engagement plan? And what is your dissemination plan? And that's a piece that may not be something that an IRB is going to focus on in the protocol submission process, but it's something that, adjunctively the CRRB is going to be looking at and oftentimes the CRRB will suggest to a researcher that that's really an improvement to their protocol.
So, going back and looking at their design, looking at what they've built and saying, well, how are you going to engage with a community partner? Have you done so to really make sure that that research is going to be relevant to them? That's a big part of CBPR community-based history research as well.
Is that research relevant to the community? Are the solutions that you're proposing feasible to the community members? Are they going to be interested in those efforts? So, they really are, as you shared the conduit to reaching community members. Many of our CRRB members are leaders in those organizations throughout West Philadelphia. They've also been excellent resources to disseminate that information accordingly and build trust again,
Amy Carroll-Scott: In creating the PZRC and its Community Research Review Board, I was helping community residents to understand what IRBs are good at and what IRBs miss. One of the things that emerged is that IRBs are set up to minimize risks to individual participants and research. They are not set up to understand community level risks. What does it mean when a community-based organization endorses a researcher and partners with them, and then that researcher does not behave in a way, that reflects well on that organization.
Or a researcher is coming in to do research that's been conducted recently. Folks have a memory of that survey or of those focus groups or of that study that recently came through. So, the community is left feeling like, well, these researchers aren't talking to each other. That got us thinking that, well, because IRBs are not required to talk to each other. So, what we decided to do was to conduct a study of IRBs in Philadelphia to find out how much they're even tracking geographic location or neighborhood location of the research that researchers are conducting.
And it was quite clear that they're not set up to do that. As a result, they don't use that information to review a proposed study. So, for example, if, a study of food insecurity is being proposed to occur in the neighborhood of Mantua in the Prama Zone area of West Philadelphia, and it's being proposed by a Drexel researcher.There's no one on that review committee who has any idea how many studies are currently being conducted in Mantua or how many of them might be related to food insecurity. The community sees that immediately because oh, here's another food insecurity survey coming around giving us gift cards. , but the IRBs are not set up to include that burden or that overlap or that duplicative nature of research at the review level.
So that's why it makes sense. And actually, a lot of our IRB champion partners agree that when the community has that context and can provide it to researchers and work in partnership with IRBs that may be the best-case scenario. It would be great if IRBs could track that and incorporate it into their review, but perhaps with a resourced, a very well-established community research review board in these neighborhoods that experience the most inequities and as a result are the most overstudied. Those community research review boards run by community members can provide that context to researchers and research institutions.
Ivy Tillman: Wow. This is fascinating, fascinating model you have.
So if we back up to the researcher who has this idea to conduct a study, and I love the concept you mentioned Caleila about the effectiveness of community based organizations programming right and how they can partner with researchers on that but so you say you have a researcher who wants to come in and conduct a study. Can you walk us through a process that a researcher would typically experience when engaging with the CRRB for their study?
Allison Rusgo: Basically, it begins with let's say through word of mouth or other dissemination efforts that we can talk about as well, a researcher is interested in our area. They're basically going to begin by filling out a survey that the CRRB members along with the PCRC created as a way to understand what the researcher needs.
Are they looking for help with that? Are they at the idea phase and they need help creating their research design. Are they all the way through and they're more looking for assistance with community partnerships or participant recruitment? So just to get a sense of what they need so that the CRRB PZRC can help them best.
And once that gets to the CRRB members and the CRRB member leadership, they're going to ask the researcher to prepare materials. Taking an extra step to look at their proposal and make it translated, jargon free and easily understandable. Then it’s given to the CRRB members to review ahead of time.
Then there is a session with the CRRB member, equip members and the researcher. We've done both virtual and in person, just given the times that we're in. But the group, I will say researchers included from feedback that we've received, they really enjoy being in person. That connection that you build when you're not in a zoom box, if you will. It's quite meaningful. Folks have shared that. That's kind of a preferred way to engage. So the research team will come and talk to you. Uh, present their project and then I'll say the whole session is led by a CRRB facilitator. That's one of the more senior members of the CRRB who has taken on this role and who basically is in charge of running the evening or running the session. That person has done an excellent job keeping everyone on track, making sure everyone has a chance to share their ideas, what have you.
Then the CRRB members have a chance to ask questions of the researcher. Some are structured questions that we ask. So all researchers have a similar experience. But then they're going to get more into the nitty gritty as they've read their proposal ahead of time. They want to ask specific questions. At that point in time, the researchers leave the room just from a logistical standpoint. The CRRB members have a chance to discuss in a closed-door session, looking at some of the criteria that we were speaking about earlier. Then they'll fill out comment cards, just to kind of capture all the feedback to share with the researcher. The researcher returns, and then the facilitator shares a brief snapshot of what was discussed to kind of give the researcher that in the moment feedback.
Following that meeting, we compile all of the comment card, written feedback, other ideas or suggestions or resources that maybe a CRRB member mentioned they'd like to share with, with the researcher. And then that is sent to them along with an evaluation because there's always evaluation and data collection in our work. We also do some feedback surveys to both the CRRB members and the researchers, just to really understand what's working, what can we still continue to improve upon, and how do we mitigate those gaps.
Ivy Tillman: So if we consider the environment now that this, the CRRB has created within this promise zone of, Mutually beneficial research. I want you to Caleila to tell us about what it was like prior to the CRRB, right? How was research conducted prior to your involvement? You kind of mentioned it a little bit and what is it like now?
Caleila Burrell: Prior to the CRRB being formed with the promise zone designation, there were a lot of researchers coming to, evaluate our current systems, how, why things are the way they are, and then, you know, returning them back to their policymakers and, you know, people involved with the Promise Zone to try and try to make changes as it pertains to education and health and safety and all of these topics. I think community members began to get exhausted by that, you know, because this designation was a short period of time. It was, it was like an ambush, so to speak. and so the CRRB really came as a result of the Promise Zone, because this ambush occurred during that time. Once the CRRB realized that, hey, we're tired of doing research, the gift cards are no longer exciting, we're over this, these community members who sit on the PZRC board and subsequently the CRRB as well, have come together with, with the institution, with Drexel being a really good ally and the city of Philadelphia's assistance as well to come together to help rectify and remedy the situation.
And they had several meetings over a period of years and they decided that this CRRB will probably be the best model to assist with it.
Ivy Tillman: Interesting. Interesting how it came together. So was there a model, what prompted like this particular type of research review board? Are you aware of any other models throughout the United States?
Caleila Burrell: There have been meetings with Amy and the Bronx CRRB, who was a really good model for us to kind of mimic. They do things a little differently, but they are currently in existence. Pittsburgh. also has a curve, I believe, which has a similar model. We've been promoting and doing outreach there. We've come across the Flint CRRB in Michigan, who's doing very similar work as well.
The models exist. This is not a new idea. CRRBs have been around for ages. I think the sustainability of CRRBs, because although they've been around, it hasn't caught on to, to pop, research world, you know, right? It's not an idea that that can sustain itself. Funding is hard to get for it. Even our funding. We got it under the pretense that this was a new idea that will help change communities. So I don't think it's able to stick. And so with us, as we're trying to sustain over time, I think that's our big, that's our biggest draw, that'll kind of keep us around and be the model for CRRBs across America because most disenfranchised communities are being heavily researched. It's not just happening in the West Philly Promise Zone. And who's overseeing that? There are major cities that are experiencing gentrification and all of these things requires evaluation and research.
So having a CRRB and us being a model and being from a big city like Philadelphia and receiving this Promise Zone designation from Obama, I think all of the aspects were just in the right place for us to move forward. Then getting the grant money from the Bair Foundation also helped push us through.
We have institutional allies such as Drexel. They give us workspace. They allow us to use their buildings for events. They work really in close partnership with us to get this work done and to help change systems.
Ivy Tillman: So, it is definitely a partnership and collective, collaborative approach to sustainability.
So can we talk about the Community Research Review Board members briefly. How they came from the PZRC board and so forth. What type of training do they receive? How are they selected? Do you look for unique perspectives when you're considering someone to join the CRRB?
Allison Rusgo: Yeah, so all those things Ivy, so interestingly the PZRC has been meeting since about 2014, 2015. They always had in their mind that a big part of their mission aligned work would be creating this community research review board. Modeling it after others that you know exist or have existed throughout the country. The PZRC members created an application process. They thought about what would be most important for them in terms of what criteria would make somebody a great CRRB member. Some of those individuals did come from the PZRC board, but given how connected the PZRC members are they were able to disseminate that application widely throughout their community networks and faith-based networks, and civic networks.
On the application many of those questions were about their lived experience, their work experience, but mainly why the community, why the West Philadelphia community is so important to them. Cause a big piece of that was ensuring that folks either lived or worked within the West Philadelphia promise zone within the West Philadelphia community.
Community and diversity of ideas is a big thing. Diversity of thought. We do have folks who sit on the CRRB who are representing institutions but who are also representing different communities. Folks who are advocates for members who have disabilities, and other sort of special populations that folks really feel strongly about. Who they are really, really advocating for.
They created this application process, disseminated the applications to their networks, and then the PCRC members reviewed all the applications and then selected folks who they thought would be the best fit for the CRRB. They have self-governing bylaws and processes to think about the maximum number of members and all the necessary voting procedures and what have you.
They did all that work. Then there was some onboarding training that the members receive. Background about research in general, also information about IRBs and how the regulatory oversight process works. How a CRRB fits into that infrastructure, which I think has been really helpful for them.
Then all of the members along with the PZRC members are all CITI trained. So they've completed various modules through CITI to ensure that they have the necessary information to be able to review researchers protocols, and to do that successfully.
Caleila Burrell: I'd also like to add that their involvement with the CRRB and the PZRC also forces them to look at research in a different way. In ways they never have.
So, it's also a good strategy for the PZRC to have these members. We do have people that are interested. That want to be a part because, hey, I've never thought about it this way. So, they have to go through the processes and the steps, but it was really good. Just having this application and board process and these community members who've never looked at research in this way. It forces them to now see research in a social manner.
Ivy Tillman: You're engaging them in a different way and considering research more broadly, which is amazing. So, leading into that or thinking about that, Caleila, what do you consider some of the greatest accomplishments of the CRRB?
Caleila Burrell: Our relationship building with researchers. I think that is our greatest accomplishment.
We've had several researchers come back and update us on what they believe our endorsement has done for their study. In ways that we can work together to try to get systems changes. Although we have endorsed studies because there's not federal wide assurance. It doesn't always matter that they've been endorsed by a CRRB and that is part of a system that we are also trying to change.
We are not there yet, but I think our relationship building with researchers who are working within the CBPR model is our greatest accomplishment.
Ivy Tillman: Allison, what would you consider a great accomplishment?
Allison Rusgo: I think for me, one of the greatest accomplishments, just because I came to the PZRC in 2020 when I started my doctoral work, and I watched the group evolve PZRC. Then creating the CRRB and to where they are now. I think it's the skill building in the group. When they're sitting in a room with researchers who are presenting their proposals. Their ability to read those proposals and really pick out the information that's either there and celebrate it and champion, you know, those efforts, but also find areas to ask, “where can we strengthen this?” They will ask such poignant questions to the researchers, making many of the researchers think, wow, we didn't think about a dissemination plan. The IRB didn't require that. Our funder didn't require that. Why have you? Their ability to just not only to ask the right questions, but then convey that feedback to the researchers in a language that they can understand.
Some of the members will say, we have to speak researcher. We have to speak research language to really help folks in that area really understand why this work is important. I think that's been that's been a really fun thing to watch as well as to watch the group's progress. And again, they've continued to iterate their evaluation criteria as well and think about what's important to them.
So again, the group is fairly new. To be honest, they only launched in 2022. So they're also doing a collaborative self-evaluation over the next year. There are midway through that two-year process. So, they're evaluating themselves, which I think is really important. To think about impact. For me the knowledge and skill building and trust that the group has built has been really great.
Ivy Tillman: So you mentioned Allison, dissemination of results. Is there a requirement for each study to provide those results, or how is that done within the CRRB?
Allison Rusgo: So the CRRB, I wouldn't necessarily say it's an absolute evaluation criteria, but it is something that when they're going to read a proposal and engage with a researcher, they're going to look for, and they're going to ask, how are you going to share that information back to the members?
It's not just publishing in a journal, right? So, is it going to be through community forums or town halls? Is it through, a lot of, our work and Caleila has been helpful with this and Amy as well, of course, is around community briefs and we've done some of the PCRC has done some community briefs around, some of the work that they did when they were engaging with IRBs through, through a collaborative grant writing study or process that they did. So I think that the dissemination piece is important and they're going to ask about it. Again, it's not something that many of the researchers who come to the CRRB have thought about. So it's been a good opportunity for the community members to provide suggestions about how they would like to see the results come back to them.
And I'll say anecdotally, we've had one of the researchers that's engaged with the CRRB has come back multiple times. So they came early on in the study design process, which is great. And the CRRB was able to help them. This team formulate their work. And then throughout the process, this research team was really excited to keep it to return and share a few times the work that they had done.
And the CRRB members look forward to that and are really hopeful that as they continue their work. that they really see a researcher come full circle, which we haven't yet to be fair, the CRRB hasn't been working long enough to see the whole process, but to where a researcher comes in the design phase continues to meet with them and then completes their investigation and comes back to share the work.
I think that that's a vision that I've heard some of the CRRB members share that they're looking forward to.
Ivy Tillman: Sure. I could see that. So if we consider engagement of the broader community within West Philadelphia, like, do you do any work around that? Or Caleila, can you share as a resident, what's really the most important thing to consider when doing community engagement or public outreach?
Caleila Burrell: We do do outreach outside of the West Philadelphia community. Philadelphia is big, but it's also small in the same sense. And we have several institutions, we have Temple, which is in North Philly and, we have a few institutions in West Philadelphia, which is why I think it was important to start this CRRB here in West.
But yeah, so we do community events, right? We were just at a jazz festival this past weekend., and we took our outreach team there and they kind of spread out. They engaged with community based organizations that were present. Politicians were present who they engaged with and community residents, you know, our everyday residents that attended this festival who want to know what is this? Who are you? Why are you here?
And so that's our model for outreach to show up at community events where we can meet community based organizations who represent residents that are also present. And that has worked, we've run into some citywide nonprofits or community based organizations that are interested in working with researchers, but don't know how.
And we kind of had that information, you know, because researchers are coming to us to get their information review. So, I think, as we go along, we're finding new ways to kind of reach each party from different aspects and right now the community based events because it's summertime and everyone's outside is the best and easiest way.
We'll also have a team that'll go to our community based organizations, community meetings to speak with community members in that regard as well. So that they know we're here. And if they have any questions regarding research or they want information on how to connect with researchers, we're that resource for them.
And we're very unique in that way because there's, there's not another organization that can do that, at least in the Philadelphia area.
Ivy Tillman: Right. So. It's, I see it like a triangle, almost. I see the CRRB kind of serving to connect the researchers, to connect the community. How do you connect with the IRBs? And if there's any, interface with them, and how do you educate IRBs on the principles of community based participatory research, the ethics associated, and so forth?
Caleila Burrell: So we had an outreach plan for that where we had contact information for a lot of the IRBs from the study that was done, a community engagement study that was done that the PZRC won grant money to conduct. So we had a lot of contact information for IRBs already. And we also had kind of received contact information for office of human, human research protections, and so, just reaching out to them, explaining who we are, why we exist, and saying, Hey, we're, we're open to working with you guys and collaborating.
We've received a lot of feedback from that. A lot of departments within research institutions that are looking to do more community engaged work have reached out and said: Hey, we, we never knew you guys existed. Let's sit at the table and see ways that we can collaborate.
I think more institutions on a smaller level are trying to get their students to engage with communities. But we want to go a step up and get the IRBs to change their systems; don't just include one community resident because one community resident doesn't really equate to community because we're diverse in that essence.
But we already have the If you'd like to partner with us, we can eliminate your need for needing a whole, just one resident, you know, because we have that. I mean, this is why we do the letter of endorsement. And just trying to get systems changes.
Now, we all know that that doesn't occur overnight. Right? But the more we show up and the more they see us, there will become a need, a greater need, and they'll need us. And so, we're trying to sustain until we get to that point, so that we can be engaged more. And, and we all want the same changes, right?
Researchers want more effective research, and community members want systems changes within their communities. If we can learn to work together, or maybe we just need that street that connects us, which is the PZRC, that should help change over time.
Amy Carroll-Scott: I think for folks to tackle something like a community research review board, it's important to tap into the very real mistrust and sometimes trauma and fear that communities of color have around research and to demonstrate how research can be transformative when communities have power and ownership over the data and the research that's collected in their community.
We know that data and research drives funding decisions and programmatic decisions and investments. So once folks have the ability to see what the other side of that experience looks like, it can be very transformative and folks can get very passionate about it.
But I think it's important to understand that it's a slow systems change. And finding folks who are interested in it in the long haul is really important.
Ivy Tillman: I think this is a great place for us to kind of conclude our conversation. I'd love for us to maybe have another, maybe in a year or so come back. Because you said that you've, it's been since 2022. That this group is formed. I'd love to hear kind of where you're where you are in ‘25 and some of the vision that that you have for ‘25. But thank you for joining us today. The insight that you provided, but also just the passion and the energy that you bring to the work is most important.
The relationships that you're building and serving as that conduit so important to really advancing trust and science and research. So we thank you very much.
PRIM&R: Thank you for listening to Research Ethics Reimagined, a podcast created by Primer and produced by Syntax in Motion. Please subscribe and share with your friends and colleagues. To learn how to become a member of Primer, please visit us at www.primer.org, be sure to join us next month as we continue our conversation with scientists, researchers, bioethicists, and some of the leading minds exploring new frontiers of science.