On Research Podcast – Community Engagement in Research

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1. Podcast Introduction (00:00:33) Justin introduces the podcast and pays tribute to Tom Beauchamp’s contributions to bioethics.
2. Guest Introduction (00:01:12) Justin introduces Dr. Jeremy Rossman, highlighting his expertise and focus on community engagement in research.
3. Jeremy’s Research Journey (00:02:24) Dr. Rossman shares his background and how he became interested in research during his undergraduate studies.
4. Defining Community Engagement (00:07:10) Discussion on the complexities and varying definitions of community engagement in research.
5. Nuances of Community Engagement (00:09:55) Exploring the broad and nuanced nature of community engagement and its implications.
6. Importance of Community Engagement (00:13:35) Dr. Rossman emphasizes the significance of community engagement for both researchers and communities.
7. Addressing Cultural Gaps (00:16:32) Discussion on the lack of community engagement training in academia and its impact on research practices.
8. Building Relationships in Research (00:19:55) Challenges of fostering genuine relationships between researchers and communities due to training biases.
9. Historical Context of Research Practices (00:22:12) Dr. Rossman reflects on past research practices that have harmed community trust and engagement.
10. Collaborative Approaches to Research (00:23:18) The importance of interdisciplinary collaboration in improving community engagement during research.
11. Community Engagement Examples (00:24:56) Discussion on successful community engagement examples and their impact on research.
12. Obstacles to Community Engagement (00:25:39) Exploration of challenges in convincing stakeholders about the benefits of community engagement.
13. Power Dynamics in Research (00:27:16) Importance of ceding power for effective community engagement and equal partnerships.
14. Designing Inclusive Studies (00:30:11) Engaging communities in the design of studies to enhance relevance and effectiveness.
15. Timing of Community Engagement (00:36:25) Emphasis on involving communities early in the research process for better outcomes.
16. Finding Community Representatives (00:41:26) Challenges researchers face in identifying and connecting with community representatives.
17. Solutions for Effective Engagement (00:45:37) Discussion of existing solutions and frameworks to improve community engagement in research.
18. Future of Community Engagement (00:49:49) Discussion on the growing awareness and importance of community engagement in research.
19. Best Practices in Research (00:50:45) Exploration of the challenges in establishing best practices for community engagement in research partnerships.
20. Impact of Community Engagement (00:52:01) The necessity for funders to support researchers in integrating community engagement into their projects.
21. Evaluating Community Engagement (00:54:33) Challenges in evaluating the effectiveness of community engagement in research initiatives.
22. Long-COVID Community Engagement (00:57:16) Insights from the long-COVID community on collaboration between researchers and patients in addressing health issues.
23. Shared Experience in Research (01:03:12) The importance of shared experiences in fostering collaboration between patients and researchers.

Dr. Jeremy Rossman: I think one of the really core things here is that community engagement should be beneficial to everybody. Everybody should win from this. If everybody’s not winning from this, something’s missing in this because research has so much to offer on a community level, and the community has so much to offer to the research. So there’s no reason why everybody shouldn’t win, but it’s really difficult to do.

Justin Osborne: Welcome to On Research with CITI Program, your favorite podcast about the research world where we dive into different aspects of the industry with top experts in our field. I’m your host, Justin Osborne, and I appreciate you joining. Before we jump in, as a reminder, this podcast is for educational purposes only. It is not designed to provide legal advice or legal guidance. You should consult with your organization’s attorneys if you have questions or concerns about the relevant laws and regulations that may be discussed in this podcast.

In addition, the views expressed in this podcast are solely those of our guests. Before I introduced my guest this episode, I wanted to take a brief moment to pay tribute to Tom Beauchamp, who passed away last month. Tom was a true pioneer in bioethics and research. He was instrumental in drafting the Belmont Report, along with many other contributions that still shape the human subject research world today. We in the research community extend our heartfelt condolences to Tom’s family, and we are grateful for the incredible legacy he has left with us all.

At the beginning, you heard a clip from Dr. Jeremy Rossman, my guest. This episode, Jeremy is a researcher of 25 years, a virologist, and the President of a nonprofit called Research Aid Networks, a worldwide organization aimed at facilitating sustainable and equitable long-term community development for research. Jeremy joined me to talk about community engagement in research such an important yet often overlooked side of our industry. Jeremy helps us understand what community engagement means, what the challenges and opportunities are, and why this all matters. I’m really excited for you to learn the intricacies of this concept, and you can tell Jeremy is a perspicuous teacher at his core, which I appreciate as I don’t have much experience in this area. So without further ado, I hope you enjoy my conversation with Jeremy. Well, Jeremy, it’s great to see you again. Thanks so much for joining the podcast.

Dr. Jeremy Rossman: My pleasure. Thanks for having me on.

Justin Osborne: Of course. Of course. So we’re going to talk about community engagement and research, but before we get to the topic, I wanted to hear more about you. How did you get into research in the first place, and then what is your role now?

Dr. Jeremy Rossman: So how I first got into research was probably back in my undergrad biology class. I was used to sort of the old, you know, you’re in high school, you’re in early introductory classes, you’re given this big thick biology textbook. Here are all the facts. This is what we know, you know, read it, learn it. And we had this one class and it diverged onto this long discussion about, “Okay, well how does this one aspect of biology work?” And the professor ended up responding with, “Oh, we don’t actually have any idea. We know the general concept of what’s happening, but if you want to know all the specifics of how this works, yeah, we have no idea. We don’t know that for probably the majority of things in biology.” And I found that just incredibly interesting, really exciting.

And this idea that you could go into a lab and almost pick any topic in biology and start to dig in a little bit and realize, “Oh, okay, well, we don’t know how this works. We don’t know how this works. We don’t know how this works.” And you go and you start looking and you think, “Wow, this is a brand new thing. This is a brand new discovery. “It’s really exciting. It’s really fascinating. It’s a really interesting time to be, especially in biology, because what we’re learning and what we’re able to do right now is progressing at an extreme pace. But the amount that we don’t know still in biology is incredible. So it’s sometimes a very frustrating time, but sometimes a very exciting time to be involved.

Justin Osborne: Yeah. So it started pretty early then for you?

Dr. Jeremy Rossman: It did. It did. I think there was always some interest just in the sort of broad idea of research, but it was fairly aimless and this really cemented it and led me down to a path to actually try and understand what does it mean to be a researcher, because that’s a whole other process.

Justin Osborne: Sure.

Dr. Jeremy Rossman: Yeah. And as you’re saying, what’s the sort of career path or where am I now? It’s been about 25 years that I’ve been doing research since that eventful biology class. And for a long time I followed what is the standard academic career path. You do your PhD, you do research there, you do a postdoctoral research, and then if you’re lucky, you’re good, depending on your point of view, you end up getting a faculty position. And I ended up running a virology research lab for a bunch of years, and a while ago, I decided that I was going to leave academia and start a nonprofit because I was really interested in what I saw as this real gap between academic research and community engagement, community benefit, especially in the context of acute disasters, like an epidemic, for instance, that I kept seeing that there was so much potential for these two sectors to really be helping each other.

And there was a desire for that too, and often a lot of attempts, but it’s a very difficult thing to do. And as a result, especially in the context of a disaster, it often doesn’t happen or it doesn’t happen as well as it could, and that really distressed me and also motivated me to start this nonprofit to try and develop ways to actually help build bridges, to overcome some of those difficulties and see what we can learn about working together better.

Justin Osborne: That’s awesome. That’s awesome. So you saw a need-

Dr. Jeremy Rossman: Yes.

Justin Osborne: … and you’re attempting to fix the need right now, it sounds like.

Dr. Jeremy Rossman: Exactly.

Justin Osborne: Well, so this is a perfect segue into community engagement. So you’re currently doing this work, but to speak more broadly about that, can you help us understand what do you mean by community engagement in research?

Dr. Jeremy Rossman: It is an excellent question that feels like it should be really simple to define and explain. And the fact that it’s not, I think is also part of the problem here.

Justin Osborne: Ah, okay.

Dr. Jeremy Rossman: So if somebody says, “Community engagement in research,” and that’s a little bit more sort of common right now than say, “Community involvement,” or, “Community participation,” although you still hear that a lot, especially with patient groups as being patient participation in research. But community engagement, if I give you that answer, is going to mean something totally different than if you gave me an answer or anybody else gave an answer. And part of that is because it’s a very broad term and it can encompass a whole lot of different things. First of all, what is even meant by community is I think a really, really interesting starting point, because often we hear the word patient involvement in research and okay, we think we know what we’re thinking of there.

But if you say, “Community involvement,” I know I tend to immediately think of a geographical community, “Oh, I am looking to involve this specific zip code in this research project,” or something like that. But in fact, community can be defined in a whole bunch of different ways, much more broadly. The patient community is a great example. You’re not just including a patient, you are including the patient community. And so communities can be value-based, needs-based, geographical, any sort of definition, but I think it’s helpful to just think of things broadly that community is a collection of people that we are looking to somehow work with in some context in a research project.

Justin Osborne: Yeah, so this is a very… I mean, it sounds very nuanced, but to your point, it’s broad enough. But you have to, I guess in order to define the terms, it sounds like you really need to know the whole picture. So you’re trying to define a term without knowing, you know, we haven’t gotten to the end of community engagement as a whole as it relates to research and all the context that’s necessary to define these terms. So yeah, I can see where this would be difficult to pin down, as simple as it sounds like you said. Okay. So I like that. So we started with community and then the engagement piece I feel like is probably equally as nuanced.

Dr. Jeremy Rossman: Exactly. And to an extent, I do feel like that rawness and ambiguity is both dangerous, but can also be really useful because it sort of… Well, in an ideal situation, it ensures that the community engagement is evaluated in the context of like you’re saying, this project, this community, because it can be very different for different projects in different communities. And so just like there’s a whole bunch of different communities, there’s a whole bunch of different ways of engagement. People have tried to define the different types of engagement that have been done. You can have something like education.

We are at sort of a minimal level, we are involving a community, but all we’re really doing is informing the community. We’re educating the community about either this is what we’re going to do, or maybe this is what we saw after we did some research. So it’s that educate and inform and that can sort of progress to saying, “Okay, we’re going to have some level of maybe like a symbolic partnership.” Symbolic involvement of the community where we hold a community focus group or something like that. Something where the community isn’t really… Doesn’t have a say in the research, isn’t really involved in it, but it’s a little bit more than just, “Okay, we’re just sitting here listening. We can actually say and the researchers may or may not listen to anything and they may or may not take on board.

Justin Osborne: Well, I guess that’s one of my questions too about this. As you’re kind of defining these and walking through the variations of what these terms mean, it sounds like the first example you gave is more of a passive, that’s more of a passive, and then you’re getting into the more active roles of engagement where the patients actually have a role that they play in whatever the situation is in the study. Does it matter… When we talk about community engagement and research in general, is there sort of a general rule referring to this as like a more active process? Or can it be as passive as just part of this is just informing? How does that work?

Dr. Jeremy Rossman: Yeah, I like that framing because it is about action and that sort of informing side is incredibly passive. And even that sort of symbolic participation side is also really relatively passive. And that goes all the way to sort of building, okay, we’re going to cooperate in the research, or we’re going to actively collaborate in the research, or we’re going to have a real equal partnership in the research.

Justin Osborne: Yeah.

Dr. Jeremy Rossman: And all of that, the activity of the community and the involvement of the community in the research increases. So whether or not one is better than the other, I think it sort of depends on what you’re trying to achieve.

Justin Osborne: That makes sense. That makes sense. I mean, again, a lot of this it sounds like is ambiguous. And I mean, we’ve sort of defined it, I feel like, and it’s gray, just like research is a lot of gray area in research, right, and so you have to be comfortable with that. That was a very long definition of community engagement research, I feel like. But it’s perfect. I mean, I guess to back up a little bit, why is this important? Why is this concept… And we’ll continue to kind of tease out, I feel like what this means in the bigger context of research, but why does this matter? Why are we talking about this topic in the first place?

Dr. Jeremy Rossman: I love that question because it’s something that seems like it should be, again, should be so obvious. But when you try and actually answer that question, it can be a little bit more difficult because say why a researcher should care about it is of course going to be very different from why a community should care about it and why a funder should care about it is of course going to be different from either one. So I think that that’s important thing. How you answer that question, why we should care is because this is all involving people. Researchers are people too that are putting a tremendous amount of effort into doing something that is really complicated, that they have their career, they have so much of their effort invested on the line for it, that they genuinely want to succeed.

The community is also a collection of people, and they are also putting themselves on the line in some way, whether it’s sharing their personal testimony, sharing their biological samples, participating in interviews or interventions. There is a lot of both effort, risk, and potential benefit on both sides as long as we can sort of remember that we’re not just data. The community members are not just data points, but also the researchers are not just an institution, they’re also people with a long history and a lot of caring that are also coming to this. But we’re often coming at very different points to the same thing.

Justin Osborne: Yeah, no, that makes perfect sense and I appreciate that again, this is more complicated than it sounds, and I feel like sometimes it’s easy in research to sort of lean into just the simple, try to simplify it and make it sound nice in a little catchphrase, right, of why something like community engagement’s important. But to your point, there’s multiple audiences and everybody has, we all have the same goal and research, but of course you have a different role that you play. So the why I feel like is probably specific and will be specific to the different audience that’s in your role in the research itself.

I guess from a practical standpoint, I mean, you mentioned your nonprofit that you started to sort of build bridges to fix some of these problems. So is it fair to say that part of this why, again, not to simplify too much, but part of this why is that community engagement isn’t what it should be in research right now. And so to your point, any efforts you’re doing and other organizations are doing like yours to try to fix this, or this is a problem because it’s not working well, and I guess we’ll get to why it’s not working well. Is that a fair statement?

Dr. Jeremy Rossman: Yeah, I absolutely think so. That it’s… Well, it’s not necessarily that it’s not working well, although that is a part of it, but it’s not integrated within the culture of research. I mean, if you’re doing clinical research and you need a patient or a community to collect your data, of course there is some level of community engagement that would by necessity have to happen. I mean, if you don’t engage your patient community, you’re not going to have patients, you’re not going to get data. Your study is out of luck. So some of this has always been necessary, but I think that it’s that sort of culture of engagement beyond just collecting data is not really something that has been established. But right now we’re seeing from a lot of different angles how beneficial it can be on the research side, how beneficial it can be on the community side, how beneficial it can be on the impact side. So it’s not like, oh, we’re trying to specifically address a harm from missed practice, although that can be true, but it’s trying to maximize benefit from something that is already occurring.

Justin Osborne: I got you. Okay. I mean, why not do better, right.

Dr. Jeremy Rossman: Right.

Justin Osborne: Let’s all try to do better in this field. Okay. So speaking of the disconnect, and you’ve talked about the academia side of clinical research that aren’t really built into the system.

Dr. Jeremy Rossman: Absolutely. I think one really big aspect of this, and of course I’m painting a very specific picture here, but there’s going to be exception to just about anything that I ever say here, so this is not a uniform thing, but on the whole, in academia and academic research, community involvement is not something that we’re trained for. It’s not something that we have in graduate school classes on what community engagement is, how it works, what the techniques are, and why it’s beneficial, even from a research standpoint. But what we are taught is objectivity, that you are supposed to be as impartial and unbiased as possible, that you’re supposed to look as objectively as possible.

And that is both absolutely critical for being a good research scientist, but also a huge barrier for community engagement, because any sort of interaction between two people, if one person is approaching it completely objectively and unbiased and uninvolved, that’s going to be really hard to develop the relationship that a real partnership would need. And so there’s that longstanding attitude that is difficult to change and also difficult to see exactly how much and where it should change because we don’t want to lose objectivity at all, but we also want to have some degree of humanization.

Justin Osborne: Yeah, no, I like that. I almost feel like there is a little bit of a mirror on the clinical side, and people have talked about this in the medical field over time, the idea of bedside manner, right. That it was built into more of the clinical practice and training and education of becoming clinician, where in the past that wasn’t a big, you know, you’re a clinician, you’re unbiased, you’re giving your diagnosis and move on. And now it’s like, “No, no, no. I think we’re realizing that a lot of healthcare research included involves humans interacting with each other, and that relationship piece of it is sort of vital.” You have to trust the person that’s in front of you giving you whatever medication. And especially in research, like, there’s a lot of foundational human emotions that are built into this that to your point, that’s not really, you can’t do that as your unbiased, very strict, scientific minded person.

Dr. Jeremy Rossman: Exactly. It is really difficult, and without some training, some guidance as to how to do that. And I mean, even how to find a community, how to first engage with a community, these are not things that are integral into the research scientist training program. And that leads to difficulties if you are then trying to engage later on. But also on the scientist side, you’re kind of starting at a deficit because there’s been years of bad practice in a lot of different communities.

And especially when you’re talking about collaborative international research, there’s often been a lot of cases where there’s that sort of research mentality of the researchers swoop in, they do a project, they collect the data, they collect the samples, they leave, and then the community or the local partners never hear anything again and don’t have any tangible benefit from samples that they donated or their own involvement. And in a lot of cases, that’s left a very sour taste either for that specific community or for others that have heard of it. And so to some extent, there’s a little bit of a deficit because sometimes researchers aren’t thought of in the best way in terms of community engagement.

Justin Osborne: Absolutely.

Dr. Jeremy Rossman: And so that’s another obstacle to try and change.

Justin Osborne: That’s huge. And I mean, I think there’s always been efforts, I feel like, to try to reeducate and re-engage communities that have been wronged by research ’cause there’s a lot of them, right. And yeah, that’s a huge issue. I mean, how do you go about, I’m just imagining, especially in academia, it’s almost like you would want the clinical researcher to have a sociologist, a historian and other folks that are qualified and trained in these kinds of community historic events and how to manage that alongside of them, but like you said, that’s not really part of the research infrastructure that we have built.

Dr. Jeremy Rossman: No, but it’s great. You’ve pointed at something that I think is incredibly important and often not done, because as a biologist, I don’t often collaborate, or I used to not often collaborate with sociologists or psychologists or people that were outside of… For me, a collaboration outside of my discipline would be collaborating with a cell biologist. I’m like, “Whoa, that’s way different from viruses. This is way out of my comfort zone.” But in the West African Ebola epidemic, I think this was a really good example of a time in which sociologists and psychologists and anthropologists actually got actively involved.

Not saying that they hadn’t been, but they were integrated into some epidemic response programs. And it was really clear the benefit that that offered, because they were bringing a very different lens in which to view the community than say, the epidemiologists. Both lenses were absolutely essential, but together, they really helped allow the epidemiologist to work better with the community, which not only allowed their efforts to be more effective, but then had a much better engagement with the community, a much better reception from the community and it helped everybody in the process.

Justin Osborne: Yeah, no, that’s fantastic. That’s a great example. And I feel like we have these examples that it worked better, at least, right. I’m sure there’s always things that we could do, but it worked better. And then I guess that’s probably to talk about more obstacles. How do we convince everybody that there’s a better way to do this stuff, even though it’s not built within your infrastructure? I know you’re building bridges yourself. Is that sort of what you’re actively doing now is saying, “Hey, we’ve sort of mapped out and we have a general idea of what works better with this, let us help you fill in the gaps where you don’t have the sort of expertise”? Help me think through that piece.

Dr. Jeremy Rossman: Yeah. The great thing is that there’s a lot of really talented people that are working on this problem right now, both from a nonprofit side as well as from an academic research side. We’ve had some wonderful examples of really solid community engagement and projects that have worked really well. So this is an incredibly fruitful field right now. So this is definitely not a doom and gloom scenario. This is a-

Justin Osborne: That’s great.

Dr. Jeremy Rossman: Yeah. It’s a difficult but, but something that a lot of progress is being made on. So I think one of the really core things here is that community engagement should be beneficial to everybody. We sort of talked at the beginning that some of these things should be so simple that they have a real trivial explanation. Well, on the benefit side, it should be really clear, everybody should win from this if not winning from this, something’s missing in this because research has so much to offer on a community level, and the community has so much to offer to the research. So there’s no reason why everybody shouldn’t win. But it’s really difficult to do.

And I think that that’s one of the really critical things here is that, I mean, first of all, any collaboration or any sort of involvement between two people is inherently really difficult. It’s even more difficult when you have two people that don’t speak the same language, either literally or figuratively, and don’t have the same experiences, aren’t coming to the table from the same point, and maybe don’t have that breadth of experiences individually to truly understand where the other party is coming from. And so you’re starting at a really big gap.

And it takes a lot of, well, unfortunately, time and effort. That’s the unfortunate thing. There’s no simple way to do community engagement. There’s no quick way to do it. It would be great if there was, and that’s often a problem with research projects that are on timelines and have restrictive budgets, but-

Justin Osborne: Always.

Dr. Jeremy Rossman: … there’s no quick way to do it. Partnering takes a lot of time, a lot of effort. But I think one really, really important aspect here that is often not talked about is power. And I think that one of the most critical things in order for really truly effective community engagement to work is that the researchers or whoever is in the position of power needs to be willing to seed some of that power. If that doesn’t happen, if that seeding of power and control doesn’t happen, it’s never going to be an equal partnership and the community engagement is always going to be unequal.

Justin Osborne: That’s fascinating. Yeah, no, I like that. I like the framing of power, ’cause even as a researcher, and again, going back to all the different groups and audiences in the research world, the researcher knows that you need the patient as much as the patient needs the researcher. Like, you can’t do this thing without all parties involved, right. So it really should be an equal distribution of power, in terms of having control over what’s happening, especially within a community. And I guess that kind of gets me to part of one of my questions about community engagement in general, ’cause we talked about, you mentioned the educational piece of it, and whether that’s a two-way street or not.

What about the actual, I guess the design of a study? Is that part of the goal of this too, is that depending on the community that you’re researching, you want them to be… I would imagine, it’s more beneficial if they’re engaged in the actual design development. Is this something that they’re even willing to do? You know what I mean? A lot of these research protocols, as you know, are sort of created in a silo. They don’t really consider all these elements that we’re talking about within a community. Is that part of this whole process?

Dr. Jeremy Rossman: Yeah, absolutely. And I think that this also does, again, go back to, it sort of reiterates that PowerPoint that I was making before, and not the PowerPoint that I’m usually talking about here either. But there is a real power thing, power struggle here, but it’s not… I just want to clarify for a second too. I don’t mean at all, researchers are approaching this from a, “Oh, I want the power and I want the control, or trying to get more control or anything like that.” But I mean it from a sort of thinking about control of the research standpoint. I mean, I know from myself as a researcher, having done research projects with communities, it’s very difficult to let go of that control because I have all these years of research, training, research experience. So I’m saying I have much more knowledge and much more experience in which to design this study or implement this study than the community does. So of course, I should maintain that control of that project. And to an extent that makes sense.

Justin Osborne: Sure.

Dr. Jeremy Rossman: We need to account for that expertise of the researchers. But on a community side, that doesn’t always work because yes, the researcher might have more knowledge and for me and my projects, I might have more knowledge of some technical aspect. But that still doesn’t mean that the way that I would design that study is the best for the community. And so you talk about your question, talking about what level of engagement, I think that relates back to this power issue. Because if you think, “Okay, I know best. I’ve designed the best study. This is a study that is going to have the best chance of addressing this issue and helping this community,” because researchers aren’t doing this because they don’t care about the community.

They do want to help. But they’re saying often, “Okay, this I think is the best chance of doing that,” then you might just inform. But I think that informing, it excludes the community more than draws them in. It reinforces that disequilibrium and that power imbalance. And so I think in any time patients or communities are going to be involved, there needs to be more involvement than just that passive side.

Justin Osborne: Yeah. Well, and to your point, I mean, if I’m part of a community that has been wronged in the past, and you’re starting at the deficit, like you said, as the researcher. If you come to my community and say, “I’m trained in this. I know how to design research,” which is all true. “Here’s the best way.” As the community person, I’m like, “Well, yeah, same people said the same thing in the past, and look what happened.” Right.

Dr. Jeremy Rossman: Yeah.

Justin Osborne: So I don’t really trust that system. I don’t necessarily want to get behind that kind of experience. So yeah, I could see where it has to be a balance, right. It should be at least a conversation. And it probably does 100% depend on the community that you’re looking at, right?

Dr. Jeremy Rossman: It does. And that at least the conversation is I think, really critical. You’re asking the community to be involved. Are you giving the community a genuine say in that involvement and a genuine say, because often there is that sort of symbolic participation where the community has a say, but it’s often too late or it’s not taken into account. A great example is, and I’ve heard this way too many times from the long COVID community, is that long COVID patients will be involved in a study as sort of the patient participation representative or some sort of aspect where the researcher’s saying, “Look, we would like to involve the community. We’d like to have the community say and things like that.”

But they’re often involved at a point of, well, they’re involved because the study is starting. And so this is a study that’s already been designed. It’s already been submitted for funding, it’s already received funding, it’s already gone through IRB approval. And so the amount that the researchers could even change in the study is often quite limited by the time the community actually gets involved. And I think that’s also one of these systemic problems is that even if the researchers did have the best intentions, what could be changed in the study at that point in time is often limited.

Justin Osborne: Actually, that brings up another question about the idea of community engagement in general. It seems like timing plays a huge role in this, like you’re saying. Ideally, it sounds like this should be something that’s built into the very front end, right. You should be engaging with these people before you get necessarily the funding or their approval and all that stuff, ’cause at that point, it is what it is. And like you said, you’re limited in what you can change. So can you talk about the timing of community engagement? Like, when should this be a thought for a researcher or a funder or anybody else?

Dr. Jeremy Rossman: At the very beginning, I would say that the thought-

Justin Osborne: Like, step one.

Dr. Jeremy Rossman: … of… Yeah, or step 1B, maybe.

Justin Osborne: Yeah.

Dr. Jeremy Rossman: You come up with an idea. You have an idea that you’re interested in pursuing. If that involves a community of any kind, I think that then the next step after you have that idea of what you’re interested in does need to be involving the community in the process. Because only at that point can the community really weigh into saying, “Okay.” I mean, maybe you’re looking at something and the community is saying, “Yeah, I get that scientifically that’s an issue that’s worth studying, but it has no impact on us. It’s not a concern for us. But this very related thing is also not being studied and has a critical impact to us.”

Or they’re able to refine or define some of how that scientific issue is manifesting in the community in ways that aren’t apparent in preexisting data. So if you start at that very early stage, then you can really start to form an actual partnership. You can start to have an equal dynamic, equal power-sharing. But it’s one of those things that’s like, “Okay, well that’s great, but functionally, how does that happen? Because you have two major issues with that.” The first is on the researcher side, most recent to form a partnership and start talking with the community about a new potential project is involved, you know, maybe you have to travel somewhere. You have to be able to present the project.

You have to know who to talk to in the community. You have to learn about the community. You have to establish rapport and a relationship with the people. And then you have to be willing to talk with them and refine and define the process. And this is way that has been a project that’s been coalesced together to be able to be submitted for funding. And we know as research scientists how often things fail at that stage. It takes so much effort to pull projects together to submit them for funding. And all too often they don’t get funded, and then they’re sort of dead in the water. And so on a researcher side, where do you find the time and potentially money to be able to dedicate that effort and that involvement in setting up this partnership? Researchers are not known as people that have a lot of spare time.

Justin Osborne: Very true.

Dr. Jeremy Rossman: So this is very problematic on the researcher side. And then on the community side, it’s equally problematic because maybe a community might be interested in that research design process of getting involved, of actually having a say in that and being involved in it for the long run. That could work very well. But then you get into a different problem, which is that the pace of this is incredibly slow. How long it takes to put a project together, how long it takes to submit for funding, how long it takes to get the reviews back, the revisions, the final funding verdict, and then even if you do get funding, how long it takes to actually implement that project. I think that, again, on the community side, you’re asking the community to go through all this with, first of all, no guarantee that the project isn’t going to fizzle out at any point in time. And then even if it doesn’t fizzle out, you’re asking the community to be incredibly patient over a timescale that is so different from the way things work outside of academia.

Justin Osborne: Yeah. Again, the more we’re talking about it, the more complicated it’s getting to me. And what you just talked about, the hardest part, and I’m trying to put myself in, you know, if I’m a researcher and I’m trying to take this on, who to talk to within a community feels like a needle in a haystack. I mean, depending on the community you’re looking at, ’cause you can’t just Google like, “Who represents this community? I’ll call them.” How do you get in front of a “community,” whatever that is. And I’ve seen efforts before, and especially at universities, that they have town halls or they have meetings at different places and try to invite as many people as they can. But again, that comes down to marketing. Are you even reaching the people that you’re trying to, like, how do you know who you’re talking to and if that’s representative of the community you’re trying to engage with? That seems like a really hard part. I don’t know.

Dr. Jeremy Rossman: It’s an incredibly hard part. And especially because [inaudible 00:41:32] is so insular and sometimes in really good ways and sometimes in really bad ways. But that furthers the communication barrier, that sort of understanding barrier, and it makes it incredibly difficult. When I’ve tried to do this, I often feel incredibly lost. Where do you even start? And I think the first thing that I can say is you start by learning is instead of being so task oriented, and, “Okay, what we need is we need a patient representative from this community,” the first step is to learn more about the community, to visit the community, to interact with the community, to understand a little bit more about how information flows, about how leadership or responsibility or expertise flows in the community. I worked with a guy who was a fabulous epidemiologist, and he did this really cool thing.

It was sort of like a type of social mapping. And basically as an epidemiologist, if you’re working on disaster response and you’re say, involved in cholera outbreaks in a rural area, okay, so you know what you need to do technically once you get to that site. But in order to sort of get to that site, be accepted in that site and get uptake of those interventions, you need to have real true community engagement, understanding, and participation in those interventions. But as a random person going to a new community telling them what needs to happen, that doesn’t work well very often. I mean, think about your community. If somebody is walking down the street, knocks on your door, and let alone is wearing a biohazard suit and knocks on your door and tells you what you need to go do with yourself, it’s not going to go very well.

Justin Osborne: Right.

Dr. Jeremy Rossman: But you can start by sort of, one of his things was a sort of trusted handoff is, okay, you might not know that community, but maybe you know somebody who knows somebody who knows somebody in that community. And so through that chain of introductions, you can get introduced to the community as a known party, which is a good step. And then from that, you can start to learn about the community. “Okay, how does the community work? What are the issues? Who to talk to?” And then from there you can say, “Okay, well would a town hall work best for getting people involved? Do I want to send a bunch of WhatsApp messages or is there maybe one specific person that I need to talk to in the community? And then from them, they will then bring it to the community, ’cause maybe actually I shouldn’t even be the one bringing this to the community.” ‘Cause that’s a whole other thing is, sometimes I shouldn’t be that person. I can say, “Okay, this is what I’m proposing. I would like to talk with the community about it, but have somebody else propose that.”

Justin Osborne: Wow. Yeah.

Dr. Jeremy Rossman: But it’s a lot of time, it’s a lot of effort. It’s a skillset that we don’t have and aren’t trained in. And it’s really complicated.

Justin Osborne: It sounds… Yes.

Dr. Jeremy Rossman: Yeah.

Justin Osborne: Well, so-

Dr. Jeremy Rossman: Not an easy thing to do.

Justin Osborne: No, it does not sound like it. But I mean, again, everything you just went through, it’s fantastic advice and sort of guidance on helping just think through the bigger picture, right, which is I think a really important place to start. So we have gone through several of the hurdles and whatnot involved in this. Kind of talk about, and maybe this is just reiterating what you’ve kind shared already, but talk about some of the, I guess, solutions that you’ve seen or that exist out there now to sort of help people think through the other side of this.

Dr. Jeremy Rossman: I think there’s a lot of solutions out there, and there’s a lot of cause for hope and there are a lot of people that have done really incredible work in this field. And a lot of it doesn’t make it any easier.

Justin Osborne: Okay.

Dr. Jeremy Rossman: I think that that’s one thing is that in terms of solutions, I think part of it is all sort of framing an attitude and knowing that it’s not going to be easy, it’s going to be complicated. But also knowing that there is a real benefit on the research side, there is a real benefit on the community side that there’s a real impact that can come from it. And I think that that’s a really critical thing because if you’re so often in a research grant, you’ll have a box that checks, “Oh, was there a patient involvement in this or was the community involved in this grant?” Oh, check it. “Oh yeah, hey, that’s a good extra point for my research.”

But when you start to think of what real community engagement could do, I mean, if you’re, again, like I was saying about an epidemiologist going out to a rural community, it’s a completely different scenario if the community understands, is receptive and is engaged with the interventions and is an active partner in it and can maintain those interventions after you’ve gone. That’s a much more of effective way to do that intervention. And there are so many other examples where real community engagement in research can have a tremendous benefit on the research itself. So I think that’s one thing is just keeping in mind that, no, it’s not easy, but this should be something that’s really beneficial. So I mean, maybe even just being a little self-focused and looking out for your own good to an extent can help you orient even in this process.

Justin Osborne: Yeah. And it feels like, to your point, this feels like a little bit of a snowball effect is the idea here in that you start engaging communities and you do it well, that community that you’ve engaged with well, they’re going to be more likely to participate in future research and all that stuff. And so it does feel like the momentum should build on itself as you work on this stuff, right. And with different communities, I feel like that’s built into the process.

Dr. Jeremy Rossman: Definitely. There’s also a lot of studies that have been done recently in terms of trying to outline practices that have worked well. There’ve been a lot of initiatives that have been tried at different levels of either governmental partnerships, research partnerships that have either worked really well or maybe even failed catastrophically, but in that failure have been analyzed so that we can understand more about what the difficulties are, what the challenges are, how to approach it.

Justin Osborne: Absolutely.

Dr. Jeremy Rossman: So there’s evidence base that we’re working with here is getting much better. And I guess the last sort of solution thing that I’ll just throw out there is that, there’s also been a sort of growing awareness at how difficult partnerships are to form to maintain, to actually be equal. And so there are a lot of organizations out there that are trying to either develop toolkits that researchers or communities can use to help navigate this process ’cause it’s really complicated or in some cases actually help to more facilitate some of those partnerships as sort of mediators, because that’s often a big thing is nobody has the time to be the point of contact for something that’s that involved, but you need somebody to facilitate and to mediate that partnership. So a lot of good resources and organizations out there that are working on this too.

Justin Osborne: That’s great. That’s fantastic. And so I guess to jump on that or off of that piece, this is evolving, right. It sounds like this whole thing, this whole community engagement concept is, like you said, it’s very helpful, it’s going in the right direction, good things are happening. Where do you see things going in the future? What kind of questions should we be asking now?

Dr. Jeremy Rossman: I see this continuing in the future. I see this growing in the future because I think that there’s an increasing awareness of course, how beneficial this can be, how detrimental it can be when done wrong, and how important it is on sort of an equity standpoint for this to be done. So I think that with that awareness, with all of the evidence base, these initiatives, these toolkits, I think there’s a growing momentum. So I see this continuing. I think it’s still going to take a long time to figure out what a best practice would be if there even is a best practice or gold standard or if that is just maybe an initial approach, but that the best practice and best standard is according to each partnership individually.

Justin Osborne: Sure. There’s too many variables to develop best practice on. Yeah, I could see that.

Dr. Jeremy Rossman: I think that there’s going to be some degree, hopefully of momentum to have a little bit more of a systemic change within science and the approach to this. I mean, like you’ve talked about in medicine, which I thought was a great corollary in terms of the bedside manner, that there is sort of increasing awareness of that and importance. And now that that is an integral thing in medicine. And so I think that is true. And ideally we’d see a little bit more training of that. We’d see more preparation for that at earlier stages, but also see that more from sort of a funder standpoint is funders right now…

I mean, funders are a really great target for a lot of this in a lot of ways because funders drive a lot of the research. And so funders have for a while now been looking at, where’s your impact statement on your grant or something like that, or where’s your community involvement statement or something like that. But often they’re relatively cursory. They’re not evaluated in the core of the research grant process, but it could be. And I know that there are a lot of funding organizations that are re-looking at funder involvement in community engagement. And should funders be only a distributor of money to the researchers, should funders be perhaps more involved in some ways? So there’s also a big discussion about funder involvement, and I see that that’s a very strongly emerging area that I think has a lot of implications for this also.

Justin Osborne: That makes perfect sense. I mean, if you think about it from a funding standpoint, if I’m a funder, I want a product at the end, right. And if somebody shows me and you’re saying there’s building evidence, you know, more and more evidence that this community engagement process works better and you get a better product at the end as a funder, I want a better product at the end. So this should be, you know, if you’re designing a study and you don’t have this model built, I’m not going to get as good a product. Well, maybe I should make that required, like you’re saying. And I know then that I’m going to get a better product than if I didn’t have this element built in.

Dr. Jeremy Rossman: Exactly, with the… And I would say on the research advocacy side, the very strong component that if the funders are going to be requiring that level, they need to facilitate the resources for the researchers to be able to do that. If they want truly equal power-sharing in a partnership for a research grant that they’re considering funding, well then, have they made sure to allocate early preliminary funds to be able to establish some of these partnerships? So there’s also a requirement that they can’t just mandate that this occurs without facilitating and being aware of the barriers to it occurring already.

Justin Osborne: Yeah. No, no, absolutely. Yeah. Nobody likes more requirements on the researcher side without any kind of understanding of what it takes to get that. So that makes sense.

Dr. Jeremy Rossman: And I guess I would say on that researcher and funder side too is, one aspect is, how do you evaluate whether it worked? I think that’s a critical aspect too, is that if you want to say to funders or to additional researchers, “Oh, this is really important to do.” Oh, okay. You can use a lot of soft words like I did and wave my hands around a lot and say, “Oh, this should benefit everybody.” And that’s all great. But as a research scientist, I say, “Well, show me the data.”

Justin Osborne: Right.

Dr. Jeremy Rossman: But how do we evaluate something that doesn’t have a great pace control? How do we evaluate something that the benefit of it might not be quantitative? That’s again, something that researchers are working on. But another evolving and difficult component is that in order for this to really get momentum and to be really sustainable, we need a way to show what works and what doesn’t and how it works and how well it works.

Justin Osborne: Yeah, I mean, like anything else, it has to be standardized at some level for you to evaluate whether or not it’s beneficial. Yeah, I could see where that would be very challenging right now in an emerging field, right. That’s very hard.

Dr. Jeremy Rossman: Yeah. In an emerging field and one that has this vagueness of definitions and approaches and potentially needing that flexibility and diversity to come up with something that can actually be compared against each other is not a trivial thing.

Justin Osborne: Yeah. Absolutely. Well, Jeremy, this is fantastic. I really appreciate you talking about this whole concept of community engagement. I feel like there’s so much nuance to this, and like you said, it’s hard to define some of these things. It’s more complicated than it maybe sounds on the surface, but it sounds hopeful. I feel like this is a very positive conversation. It’s very nice to hear that things are going in the right direction in your experience.

Dr. Jeremy Rossman: Thank you. Yeah, it’s been a great conversation. I’ve really enjoyed being on here and I love issues like this that can be so difficult, so complicated, and so disheartening sometimes, but often have really great people working on it, really great progress and have a lot of positivity to offer in future directions.

Justin Osborne: That’s awesome. That’s awesome. Well, thanks again.

Dr. Jeremy Rossman: My pleasure.

Justin Osborne: All right, so we are back. I’m sitting here with Jeremy still and we’re going to get into our same team segment. So Jeremy, it’s easy to get bogged down in our day-to-day job responsibilities, but I do believe that most of us stay in this research industry ’cause we actually care about the impact we’re making and we want to make a difference. So can you share an experience or an example from your career that has connected you with this idea that we’re all on the same team in research?

Dr. Jeremy Rossman: Absolutely. I have a, well, what to me is interesting, we’ll see if it’s interesting to anybody else, but to me it’s an interesting example because it’s an area that is fraught with conflict, but has this really shining ray of hope and sort of all being on the same team together kind of message within it. And that comes from the long COVID community. And so I’ve been very engaged with the long COVID community, both as a patient and a researcher for a while now, and first of all, there’s a lot of conflict. There’s a lot of patient complaint that research isn’t going at a good pace, that researchers aren’t having good community engagement, that the research isn’t addressing what the needs are actually important to the community, and just that the process takes way too long, which you can’t really argue with. But then complaints on the research side about how difficult it can be to work with patients.

So there’s this sort of difficult sell, but then there’s been a lot of really great examples of truly collaborative research. And one of the really interesting things has also been patient led research. And that’s been fabulously interesting because long COVID has affected so many people in the world, it’s also affected a lot of scientists. And so you have this collection of scientists that have become patient researchers, which is a very interesting duality because again, you don’t often get to be a part of the same community that you’re researching, nor should you really be part of the same community for objectivity. But that’s been really interesting and really fascinating to see. And I feel like those scientist patient researchers have been able to offer a view on both sides of the fence that have been very interesting. But at the same time, you’ve had patients coming together, learning from research and putting things together themselves.

You’ve had things like the patient-led research collaborative and all of these other initiatives that have actually done really incredible things, really starting directly with patients, but in the middle of this patient-led research and these patient researchers coalescing at the same time, you’ve had this sort of shift in, not always, but in some ways within the long COVID research community, where you’ve gotten a lot more researchers that are really working with communities, working with the patients. Because once they can actually sort of bridge those gaps, it’s really clear that they’re all on the same team and all trying to get the same thing. The patients are all coming together and advocating really loudly because they’re suffering and they need things to be different.

But they also know that those answers, whether it’s what’s causing the disease or what can be done about it are not known. And so there’s this need for research. And there’s also, on the researcher side, there is this awareness that, hey, this is not just an interesting academic problem, which yes, okay, it is, to be fair. It’s an interesting academic problem, but it is also a critical research question that directly affects the health and wellbeing of a large number of people and can potentially have very direct translatable impact. And the researchers are trying to help the patient community get better. The patients are trying to help the patient community get better.

They both realize research is an integral part of how we get there and then how we maintain that and prevent that in the future. So yes, there’s still a lot of contention. There’s still lots of examples where it hasn’t gone right. But there’s also a lot of examples where it has gone right. And it’s really inspiring to see on so many different levels, whether that’s researcher led, whether that’s patient led, whether that’s patient researchers, all of it together is just really clear. We’re coming from very different points. We have very different skills and expertise and knowledge to offer, but we’re all trying to analyze this research problem to help create an impact for a suffering community.

Justin Osborne: I love that. I love that example. I mean, like we’ve been talking about communities, communities are defined sort of by a shared experience, right. And you’re talking about these patients and these researchers having this long COVID shared experience. And like you said, everybody’s on the same team to find out how to solve this problem. But that’s a fantastic example. I like that. If we could only scale that out to everything else.

Dr. Jeremy Rossman: Yes, absolutely. And unfortunately, hopefully not, because I think a big part of the reason why there is that sort of more shared framework in which to sort of form the shared understanding is because we all went through the pandemic together and that that creates this framework and knowing that a significant percentage of people that got COVID could develop long COVID, well, that puts everybody in the community to some degree.

Justin Osborne: True.

Dr. Jeremy Rossman: And so it’s a great example. I don’t know how representative of an example it is, but definitely not a model for how to approach it in the future. But it does just show that if you can create a common shared framework of understanding for people and see the people on the other side as people with a completely different breadth of experience, completely different expertise and knowledge base, but a valuable one, then it’s really easy to see that, okay, we’re all trying to do the same thing maybe in different ways, but as long as we can see each other as people, then hopefully we can get further along that path.

Justin Osborne: That’s fantastic. I love it. Again, thank you so much. That was a great example and I appreciate you being on here. I appreciate you sharing your insights. This is very important, I think, information and a great conversation.

Dr. Jeremy Rossman: My pleasure. Thanks for having me on. Thanks for setting this up and running these podcasts. It was an excellent conversation.

Justin Osborne: Thanks, Jeremy. We’ll talk soon.

Dr. Jeremy Rossman: All right, have a good one.

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