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Towards Equal Footing: Building community with rurality in mind

🎧 A conversation about communicating amongst scientists, clinicians, policy makers, and rural communities with the communications specialist of the Northern New England Clinical & Translational Research Network (1h 15m with transcript).
Published onApr 21, 2022
Towards Equal Footing: Building community with rurality in mind

In this conversation, I get to chat with my friend and college Dr. Ellen Brennen. The topic emerged out of one of her tweets that I thought was an important part of the discourse around media literacy and actually understanding communities that scientists/policy makers try to serve.

The Northern New England Clinical and Translational Research Network connects researchers, clinicians, and the public with the resources they need to conduct clinical, translational, and community health projects. While there are many Clinical and Translational Research Networks around the country, what makes this one unique is that it serves and works with predominantly rural communities in their community outreach which serves as a unique challenge. As their communications specialist, Ellen is responsible for managing the networks online presence, supporting researchers in communicating their science effectively, and helping network leadership develop strong applications and strategies for research impacting community health..

In this conversation we really dive into the use of jargon (“science speak”), how to foster healthy discourse amongst different community types, the particularities of addressing rural communities and dismantling assumptions, and the policy and infrastructural changes needed to best provide resources equitably to everyone.

Listen here & follow along with the transcript below

Introductions & Breaking out of Jargon

I'm Ellen Brennan, I got my PhD in neuroscience from the University of Michigan, because I had already always been interested in how we learn. And so I wanted to go into research and use what is actually real about the brain to transform education. And I didn't do anything like that at all. I, my PhD was focused on how we navigate the world around us. And it looked at one specific neuron, which was really cool. I enjoyed it totally out of left field, though. And then I took another hard turn, and I left research and I'm now kind of in a more research support role, where I work for a multistate Clinical and Translational Research Network, and I'm their communication specialists. So I support the researchers in communication endeavors, if they want, I run all of our communications website of social media eventually come up with communication strategies to reach all of our networks across all the states. It's very, very broad now, which is really exciting, because it's a lot of different stuff. But it really just focused on how do we communicate health messages effectively?

sarah kearns 02:04

So for you, what was a through line that you could see maybe from what you were studying in how we perceive things? Do you apply any of that to your communication strategies?

ellen brennan 02:18

It's hard to see a through line, because, you know, like I said, every step of my educational and professional journey, I had an idea or a goal for it. And I did not even come close to that, you know. So there was no linear thing. But I think what I took out of the research, both in undergrad and grad school, and now apply to communication is just like, how you approach thought, is very different than how you present it, or it should be very different than how we present it.

And so I kind of take everything that I learned from research, and try to do the exact opposite. When I'm talking to people, you know, research wants to know all the details, all the nitty gritty things, because to really understand something, you have to understand all of the parts, and then you can put them together and get to the machine. But in the world, those parts aren't really often that important. It's the machine that matters. And so when we're communicating, or when I'm trying to think about how to communicate different things, I try to stay away from diving into that hole. And that's also when we're working with researchers and trying to help them communicate, it's like, time to dig, we gotta get out of those details. Those are great. And they're super important for the research, but not always for the message.

sarah kearns 03:54

So how do you work with them to to sort of find that message? I imagine they probably have it themselves already?

ellen brennan 04:04

They do. And I think they almost always do. We have a lot of pilot projects that this network supports. And so what it is, is a small chunk of funding that can get a project really going. And so researchers have to apply with a very specific idea in mind. And then if they get funded, they have the money to really pursue that idea for a year and just get into it. But what I'm working on right now is putting up a little archive of all the different projects that were awarded and what they were after the fact. So they've done that dive down into the idea and they've gotten all the details and it's really exciting, but when I'm presenting it when we're going to present it on the website and everywhere else. We're presenting it to everyone and a lot of our membership are not just researchers and clinicians, so they have to pull back out from those details and go back to the story. But they had the story ‘cuz they applied for the grant. And when you apply for a grant, you have to convince someone that it's worth funding. And so you have to tell them the story and get them to buy into the story. Like, I really love that.

So what I do is I just have like a 20 minute conversation with them. And I asked, the first question is always, “how did you come up with this idea? But don't even tell me what the idea is. Don't tell me what you're doing. How did you come up with the idea? Why did you want to do this?” And that gets them to think all the way back to before the beginning. And it just, they're so amazing. If you can pull them out of that science talk, they have such cool stories. And so really, all I try to do is if they get too jargon-y, or too much science talk, sometimes I'll be like, “Oh, that was really interesting. Could you try to, you know, tell me about it without using so many terms, just like describe it, simply.” And if they're still not getting it, sometimes I just ask a really what they what some people might consider a really stupid question. I'm just like, I'm gonna put you in the position where you think, “oh, boy, okay, I can't use any of the jargon I know.” I'll be the stupid person if that's what it takes. And then they just, they get there. I think that's the thing is a lot of researchers and scientists and doctors and clinicians, they all have the story because it's their story. And it's a really cool one, and they love it. So they're going to be the best ones to tell it. They just have been speaking a different language for a while and they need to go back, translate back into the old one that they used to talk.

sarah kearns 06:50

That that rings true. For everyone else listening: we met by both being science communicators while we were while we were at [the University of] Michigan. And I feel like even even though I can speak both languages, it is so easy to just fall back into science speak when you're in that context. And it is really hard to rip yourself out. Like you really sometimes need that other person, like you need that journalist to be like, explain to me like, I'm five, please. Because everyone else is relative five year old here.

ellen brennan 07:21

Yeah, and like, I mean, that's why jargon exists, right? That's why science language exists is because for that scientists are the scientists in that very specific field. That's the best way to talk. It's the most efficient way to talk.

And everyone has jargon. You know, I was just learning the sugaring process with my neighbors how to make maple sugar or maple syrup, they have a sugar house on the road, and all the neighbors get together and make maple syrup. And they're telling me about the reverse oxidizer and all the stuff that it does. And I'm sitting there like, “Jargon. Guys, this is jargon like you make fun of me, because I'm the scientist on the block. Do you understand that? I have no idea what you're saying.” Yeah, like this is, every profession, every person has jargon. And in those spheres, it's the easiest one to use, and it is the one you should use in that sphere.

But when you leave a sphere, and you go into a new environment, especially with science, communication, and with rural communication, you have to be willing to adapt to the environment, you cannot bend someone else or something else to your will.

Spanning Across Different Communities

sarah kearns 08:28

Yeah, meet them sort of where they are. And that I guess for ] the organization that you were with, it's a lot of translational work research. So what all is involved in that process? Like which group so you're trying to have talked to each other?

ellen brennan 08:44

A lot involved in this process. And I think the great thing about this network is I just they do it by themselves. So I'm just here and the network admin, we're just here to support them. But really, the it's researchers who study diseases, or like population level, things like: How and why did communities make decisions? Or, you know, right now, a big thing is vaccination hesitancy, or even COVID testing hesitancy. Well, why are we hesitant? so people who are studying diseases or public health issues. We're just here to support them. The whole goal is to create the system or the infrastructure that they need to do impactful work in this region, and ultimately make the health of our region better.

It just so happens that our members and our researchers and clinicians and institutions already know and appreciate that in order to make the health of the region better, they need the people of the region to help them do it, you know, so we're just here supporting them in their efforts to try to engage communities and try to work with our unique populations, because they already know that they have to do it and they're already really great at it.

sarah kearns 10:13

What in particular about it makes it really great? Which part are you referring to there?

ellen brennan 10:21

So I'm in northern New England. So our three states are Vermont, Maine and New Hampshire. If you look this up a you'd find that Maine is the whitest state in the country. And Vermont is the second whitest state in the country. So when you diversity is not exactly the first thing that's going to come to mind. But there's a lot of different types of diversity. And there's a lot of different identities. And something that makes us very unique is that we are predominantly rural, very, very rural, we also have, I'm pretty sure this is still accurate, but the largest proportion of elderly in the entire country. So we have, and we have, you know, we have large Native populations, large immigrant populations, and even our urban communities have a lot of traditionally underserved communities in them.

So we have a lot of different communities that don't necessarily always have the best access to health or health care. Or even if they have access, it's not always the best quality because they don't have either the supports or services, the same level of resources, or they don't know how to use it. So we have clinicians and researchers who are starting all these really cool projects at just don't know, trying to expand those resources, trying to understand where resources are lacking, and trying to understand exactly what needs are not being met by these different communities. And I'm realizing now that like we're talking a lot about the network on we wanted to keep this more vague. So I'd like to pull back a bit because yeah, it's an amazing network, but I am by no means our like, spokesperson on their communications person, but we should really, you know, there's a better people could really speak about all the stuff that the network does.

Communication Strategies

sarah kearns 12:23

Yeah, no, sure. I mean, since science and medical communications are always challenging no matter what. Scientists speak different than policymakers speak different than regular non scientists, non policy speakers. But in particular, like you mentioned, the communities that you're working with being in particular, rural and elderly, how does that change your communication strategy?

ellen brennan 13:02

Yeah, well, rurality changes the strategy in so many ways. But at the same time, I feel like it shouldn't change it at all, you know, because if you want to do effective and impactful science, or medical communications, or really just any type of communication, you need to tailor your message for your audience. And the biggest needs of the rural audience. And this is a generalization because there are so many different types of rural and morality. And so rural communities are going to be different in different places. But in general, the biggest needs are accessibility and approachability. And in the ideal world, that's how we're handling every single conversation. But we don't live in the ideal world, we live in the real world.

In this world, if I think about science, standard science communication, there are two major factors of it that are really just wholly incompatible with rural communication. And so the first one is, and this is the biggest one is the deficit model of communication. So I'm the scientist. And I acknowledge or I realized that, you know, this specific community has a huge problem with obesity. And so that's a deficit that they have. And also, I'm the doctor, they're not. So I know more about this problem. I know more about the solutions. And so I am going to this community, to help them to fix them. They have the deficit and I am here to make up for that. That's a really unhelpful way to approach a conversation. Because you're not creating an environment that's very welcoming. You're not valuing. You're basically saying “hey, If you have a problem, and that's bad, but it's okay, because I'm going to fix it.” And if that is the perspective you're taking with your communication, I promise it's going to come across. And that's not the nicest one to feel.

It's better, especially when we're talking about rural communities, it's better to acknowledge that you, as the doctor, in this scenario, are the expert on obesity. Sure, what you are not the expert on, is that community. Do you even know why they are having a problem with obesity? Do you know what the factors are? Do you know what their needs? Are? Is that actually their biggest concern right now? Or are they trying to combat other issues or find other resources, and so you're just coming in, you're swooping in essentially, like, you have this big problem, “I'm gonna fix it, and everything's gonna be better.” But you don't know that that's the big problem. You don't know if your solution is actually actionable by this community. And, honestly, you don't know if that's an issue they want to address.

So when you think about communication with rural communities, in any community, again, in the ideal world, you never want to take that deficit model, you want to take, you want to enter into the space as equal partners, you have an expertise, and that is very valuable, but they have an expertise. And the only way you're going to know how to how your expertise fits into this space, is if you understand what they're bringing as well. It's always a compromise, it's always an equal relationship. So that's, that's the first one that deficit model of communication, I just holy, holy dislike. And I know, I've seen it a lot. Not even just in my network, but in the academy. You know, in academia as a whole, when rurality comes up, a lot of assumptions are made, and that status is already pre established. But I gotta tell you that status is wrong. And a lot of those assumptions are wrong. And I'm guilty of them too. So you know, it's fine. But you can't just put yourself on the totem pole, the higher up on the totem pole, just because of where someone lives.

So the other the other thing, the other big one that's incompatible with real communication is, as scientists and I had, I'd still do this. There's like a fear of simplification, or, or the same kind of like the belief that the complexities are necessary. And, you know, I do believe if I think back to my PhD research, I do believe that those complexities are necessary, right? They were super important, I couldn't have shown what I showed without them. But I can tell you about it without them. And you can understand what I showed and why it's important and how to use it without them. And it's not “dumbing down.” That's a phrase that I really don't like, because one, if it were dumbing it down, it wouldn't be this hard. You know, it's a real challenge to explain very complex things in accessible ways. And so that couldn't be dumbing it down. I don't know, when I think of dumbing something down, I think of making it easier, not making it harder. And then the other thing is, dumbing it down to me just makes it sound like your target is dumb, then, you know, you're calling the people you're dumbing it down for dumbed down again, they're not, they just have a different expertise than you do.

So those are the two big ones that I see that really, when there's an issue, or when someone's struggling communicating a message, particularly with rural audiences, one of those two things is probably at play, you're either using that deficit model of communication, so you're not going in on equal footing. And that establishes a bad relationship, or you're just too uncomfortable. Removing those complexities, because you're so used to them. And you know, you know, that they're important, because they are, but we're in a new environment now. And different things in this environment are important. So we got to step back, let go and the details, breathe, it'll be okay. And sometimes the most exciting things, you know, if you're communicating effectively, someone's going to ask you about the details. And then you get to bring it back in and that's super exciting. But that's what you want. You don't want the reverse where they're getting lost in the details. You want them to seek them out if they're interested.

sarah kearns 19:41

Yeah, yeah, that makes sense. If you're if the person that you're trying to communicate and drowning in all these details, you're also probably as the like the “science communicator or expert” in situations, you're also going to pick up on that like so that weird, frustrating dynamic .

ellen brennan 20:09

You get into kind of this big trap. It's a trap. When you're communicating anything, there are two things that you really want to focus on. One, obviously, what do you want the person to know? What do you want them to learn from you what's what's the content, but two, and this should be just as important, if not more important, is how do you want that person to feel? Because the second they feel confused, or left behind or frustrated, they have stopped listening really to the content. And they've got this internal dialogue going on now that even if they're listening.

For example, I have a lot of processing issues. And so a lot of times in courses in college and graduate school, and then research things went too fast for me. And so I'd be listening really intently at all these details trying to learn them. But at the same time inside my head, I'm going oh my god, I'm so dumb. Oh, I'm missing all of this. Oh, gosh, just pay attention. Okay, pay attention. What does that even mean? And like, in my head, I'm questioning myself, why don't I understand this? Is it me? Is it them? You've lost me entirely no matter how hard I'm trying to listen, I'm gone. And so you don't want them to feel that bombardment, you don't want them to feel excluded. And you don't want them to feel belittled. You want them to feel ideally, is interested. Happy. I think if you can make someone laugh, that's really great.

Because in the end, if they're not going to remember everything you said, Who cares? I don't remember everything everyone's ever said to me. I don't remember everything. Even one person that said to me, you know, I don't remember everything I've said in the past five minutes here. But I do remember how most people have made me feel. And that has determined whether I talk to them again, whether I asked them questions when we are having dialogue. And oftentimes whether I remember what we were talking about. So if you can make them feel good, even if they forget some of that message, you're probably going to get them to communicate again. And you've established this relationship that can persist and be useful, and welcomes the engagement with whatever you're trying to get them to engage with. And that is the biggest thing in rural health communication.

sarah kearns 22:39

Yeah, I can imagine to building like that sense of trust almost as well. If you feel like you can trust your community, or if you can trust your your doctor, you're way more likely to disclose information about yourself and feel like you can tell them about your actual problems and struggles that you're having, if you can actually trust them. So how have you found to, build a reliable network of that?

ellen brennan 23:12

Yeah, that's the big question.

sarah kearns 23:15

Just I mean, casually answer that, right?

ellen brennan 23:17

I think, yeah, trust is the really, really big one and another. Again, I it's important that nothing is one sided. So we definitely as the scientists, we want them to trust us. But, you know, we should also be trying to come at it from being able to trust them. Because we want an equal relationship. And so how do we help them trust us? Well, how would you? What would you need to be trusted or to trust them?

Let's say, a researcher going into a community, and you're trying to start a project with this community, you need to come up with collaborators, you're collecting data, you're not just going to ask anyone and everyone, right, you you have an idea of who your target audience is you have an idea of what your question is, and how to answer it. And so you come up with the right people for the right questions. And that's this really delicate process of like, who is my target audience? Why are they my target audience? And then can I kind of maintain my target audience with meeting their needs understanding what they want stuff like that?

sarah kearns 24:46

Do the populations they ask change as they start doing the that work, or do they just like they have the thing in mind and they just like, kind of force force the audience to stay the same?

ellen brennan 24:56

It always changes right? I mean, any Even if you're not working with people, science does what science wants. And it's not our jobs to force science, that is not the way to go. It's our job to follow science. And so it'll take us wherever we take wherever it takes us. And we just got to do our best to follow it and understand why it's going in that direction. And especially when you work with people, it's all over the place, right.

Meeting Rural Communities Where They Are

But the community members are going to be doing the same thing. They have questions that they want answered? And are you answering those questions or not? They have needs? And I don't know, interrelationships that already exist? And do you fit into that or not. And I think a big part of establishing this kind of mutual trust is one feeling like your needs are equally important to the other party. So as a community member, if this doctor shows up, and he wants to help with addressing obesity in our community, but I'm really, really concerned about access to COVID testing. Now, we're probably not going to have any relationship at all. But that doesn't mean that this doctor who's trying to study obesity needs to just stop and start studying COVID testing. Instead, what should happen is, they should say, “that's a really important topic, here are other resources related to that, that I can content connect you with." And we can, you can start helping that sort of study or that sort of program happening here as well. Do you know of any connections I can make here, that might also be equally interested in obesity.”

When you meet someone who doesn't fit, you let it roll off, sometimes it's gonna happen. Or, if you have the capacity to still form a bit of a relationship, try to form it, you don't have to maintain it. But always try to form an equal partner relationship. That's how you get buy in from the community is that they have to feel and understand that you're not there just for your own gain. And honestly, scientists, like our studies, a lot of times are these really big long things that are going to impact the world. But in the six months, that we're in that community, it's not going to impact the world, it's, you know, what the community member sees is not that end result. And what we see is not that end result for a really long time. And so you have to also realize that you're in it for the long haul. They're in it for trying to make their lives better, I guess. And so we have to kind of, I don't know, you have to balance those details of where you want to go, and where the community is right now and where they need to go.

sarah kearns 28:21

That kind of reminds me of what you said, right at the beginning: trying to pull back in like the big why question and sort of get that buy in, but also like, focusing in on the process. Not just like, why are you doing it? But what does that actually look like? What does that actually feel like?

ellen brennan 28:39

Yeah, yeah. What does that feel like? And how we establish trust? And what is yes, okay. So when we're thinking about how we can establish trust, the other thing, and it links back to part of how does this process feel like for the person, what is this going to feel like? And is that something they're willing to, you know, feel? But the other thing is? Is it the process that they need to be going through right now, the process that they want to be going through right now.

For really effective community work, you have to get the buy in from the community before the work even begins. Because if you approach a community, a specific community with a project that no one wants to do, or no one can do, you're not going anywhere. And so a lot of times one of the biggest issues or not issues, but stalls that we see with projects is they identify the needs through community needs assessment, so they engage community members and leaders to figure out what the need is perfect. And then they develop the project. And then they roll out the project, and they realize that what they're asking the community members to do is not possible for them. And there are so many reasons that this could happen. So

sarah kearns 30:04

Can you give us an example of that real quick?

ellen brennan 30:06

I'm about to. One thing that really stalled a lot of community focused work, especially rural community focused work was the transition to virtual remotes things. So in the state of Vermont, I think it's about let me see. Maybe maybe 30% of homes in the state of Vermont, have access to internet that's fast enough to support more than one device at a time. And I think it's only 19%. Not I'm wrong 25%. So one quarter of homes in the entire state have fiber optic internet. And I think about 50% of houses are left with 25 megabytes per second, which is enough to watch a video, like to stream a video online if no one else is doing anything online. And then the rest, which is what another 20% have less than four megabytes per second of internet capacity. That's 20% of the state couldn't have a Zoom call, couldn't engage with a lot of like online modules. And so and that's just internet.

So now we have to think about even before COVID happened before everything transitioned to virtual, there was geographical distance, right? If you wanted people, I mean, historically rural areas do not engage with clinical trials as much. It's not because they don't want to, it's not because you know, it wouldn't be great to have those resources or because they don't have the diseases that clinical trials are looking at. It's because asking someone to drive an hour to the nearest hospital that might be able to provide whatever this clinical trial provides, is really difficult. And it's not the community members fault. And it's not the hospital's fault. And so it's just like, how are we supposed to bridge this gap?

When the only answer really is improving infrastructure, and that's really hard to do, too. I mean, you can provide transportation, but that's really costly, and then you're still I mean, just an hour to get to the place. And that's if it is an hour someplace, it's going to be two hours or three hours. So someone might have to take an entire day off of work, just to go get it experimental treatment or just to learn about it, then we'll have to do this multiple times. Can they take a day off of work? It's just, it's very, very challenging. To engage communities in an actionable way, especially if rurality is a big part of the focus.

And so when we're trying to come up with a project that would engage them, or even if we're just trying to communicate a message, you have to think, is this the like the topic they want to be hearing about, and that's a needs assessment. It's something that a lot of public health workers know how to do. It's something that's really important. Communities have needs assessments run pretty regularly. And it's really not resource heavy to do as long as you have the right collaborators, someone who knows how to run a needs assessment and who has those connections. Once you build the network, you can identify all the stuff you got to look at pretty quickly. And that's again, that's why our network is so good at. But it's the next step of okay, we've identified the needs or the problems, because the communities told us what they were not because we decided what they were for them, they told us what they were. Now we have to figure out how to solve it in a way that is actionable for them, it cannot demand too much. It cannot provide too little. And so often we forget that that's probably a process we should also be including them in.

sarah kearns 34:25

If, if those types of I don't know if they're questions or follow ups, or if those were part of the initial, like surveys that you're that you're doing?

ellen brennan 34:40

So, I don't do this, so I don't know. What I do kind of know from hearing from the different people in our network is a needs assessment identifies the need, and then after that, you can often develop focus groups within the community where you get a wide variety of different community members, you know, from just the member level up to like community leaders, you know, politicians in the local area, school board leaders stuff, people like that. And then you just run ideas past them, there are these little focus groups where they'll meet virtually or in person, usually, there's incentives provided, because you are asking people for their time to do work for you. So you should probably support them to be able to do that. And then we just brainstorm. I mean, these are the problems that we've all identified. These are ways that we have the resources to address those problems. Is that sustainable for this community? Is that realistic for this community.

And the really important thing is that they are the experts, you can come up with a million great ideas, but they're the ones who are probably going to know if they're gonna work or not. You know, they might not know that, this protein is definitely the one that we need in order to address this chronic health problem, you know, but they'll know, if changing the food that's given out at the food bank to supplement this sort of diet more is sustainable or actionable for that community. So you need their buy in to the entire process. And then you need it as it rolls out. Because just because we all think it's going to work, doesn't mean it's going to work. And it very rarely does. And so we need regular check ins to know, is this working? Is it helping? Is it not doing anything really at all? Is there undue stress? Is it, you know, are people unable to engage like we thought they'd be able to? And again, it's the community members who are the experts.

So at the bottom line, when we're developing projects, or programs that we want to address community needs, or target rural communities, you're gonna need rural community members on that study team as equal members, because we can't do it without them. But then let's think about just communication. We're just science communicators.

Say I want to talk about why it's important to test for COVID. That's a good message, great message. How can I make that message accessible and approachable for a rural community? Because it's, there are, you know, statistics out there showing that in rural areas, we have lower levels of testing? And why is that? Is it because the messaging isn't there? So they don't know that it's important? Is it because the tests aren't there? They just can't get them even if they want them? Because they're adamantly hesitant. They're just nervous or scared, or they don't want to? None of those questions have really been answered yet. But there's nothing wrong with trying to approach them all, a little bit at a time. So when you're coming up with a message, and you have a specific community in mind that you want to target. I think the most important thing is just to, again, do not take that deficit model. Don't talk to them, like “you don't know this.” But you should, you know, talk to them like, “Hey, this is something that's really important for these reason, for these reasons. Does that resonate with you?” And always get that feedback? Because I don't know. Like, if I were thinking about COVID testing in my region, there is really high. There's a huge difference between testing availability in urban areas, and in rural areas. Yeah. And I need to get tested. In this urban area in which I work, I make an appointment. And I get tested a few hours later that day, we're just like, walk down the block to what yeah, when I go home, to my house in a very rural area, and I can't get to work because my husband has tested positive for COVID. And I need to isolate until I know if I have COVID too. And I need to get a test. They're 10-15 miles away. They're booking out a week or two in advance. I can find them online because I have internet. But I have internet. Not everyone does. And I can get those in like five days time with shipping. So it's a very different process to get access to the exact same thing when you're 30 miles up the road from the city.

sarah kearns 39:56

And that much more expensive to get it like shipped too.

ellen brennan 40:02

Yeah, there's shipping costs. And there's the time costs. I mean, I got to work from home, because my office space has the policy were like, well, they have the policy, if you test positive, you go home for a while, and you can work from home. But my boss is the type of person where I can say, hey, my husband has it. I don't know if I have it yet. And I'm uncomfortable exposing my friends. So I'm gone. And he was like, absolutely. And then there's the next layer of, well, I don't have it today, which is great. But my husband has it. And we live together. Yep. So now I want to wait a couple more days to make sure that our at home distancing is working. Because I'm literally living with a person who has COVID. And I could bring it to my staff to our office at any time. So again, my boss, absolutely. I was working from home for multiple days, I didn't come back into the office till almost a week later, when we were very certain that everything was going. And at that point, I was isolated in my own office, I had so many things going right for me that all of this was seamless, you know? But that's not always. And very rarely is that the case for some of these underserved populations. And so when you're thinking about,

sarah kearns 41:25

They probably don't have the option to work remote. And you know, a lot of jobs are not compatible with just like, “I'll just log on my computer.”

ellen brennan 41:31

Exactly. Yeah, that's not the option for a lot of jobs. Even in urban areas, that's not the option, a lot of jobs. So you really have to spend a lot of time and a lot of effort focusing on what do they need? And they're the ones who are going to tell you. How can they get that? How can we get that to them? They're the ones who are going to tell you and isn't working. And they're the ones who are going to tell you. So yeah, you just need that equal relationship.

Addressing Dis- and Mis- Information

sarah kearns 42:17

No, I mean, there's there's a lot there. And I guess I'm kind of wondering because you've kind of spoke to or spoken about, you know, being on an equal space or equal level when you're asking questions and sharing information. But I guess I'm kind of wondering within that — especially since you're talking about COVID now and being maybe afraid of getting tested or afraid of getting vaccinated — if you've ever faced like this or misinformation and how how you've found ways to perhaps like… I'm don’t want to say “overcome,” because that makes it that doesn't like address the emotional aspect of it. So yeah, substitute the correct word in there, thesaurus brain, um…

ellen brennan 43:05

Yeah, yeah, no, I'm following. So let's pull out now of research of science communication of COVID. Let's pull out of everything, and just go to is there dis- or mis-information reaching rural communities? And what how can we address that? Yeah, of course, there is. It's everywhere. It's a huge problem everywhere all the time. And it's not even. It's not a bigger problem in rural areas and other places.

I don't have a statistic to promise that to you. But in my like personal belief. You know, it just doesn't make sense to me that misinformation and disinformation is going to be larger in rural areas. When we think of rural areas, one of the first stereotypes is going to come up is lower education. It's one of those assumptions that comes up: all they're all farmers.

Well, first of all, farming is really complicated is very technical. There's a lot of chemistry there's a lot of physics, there's a lot of biology, it is a very complicated and knowledgeable trade. So take that stereotype aside, but to the assumption or stereotype that rural people are lower educated or just less intelligent, is really unfair. And it's not going to be accurate everywhere you go or most places that you go. So we should just leave that aside. But the thing that might influence myths or disinformation is that rural access to communication is limited.

So where they can get their information where we can get our news is a lot smaller compared to the options that someone in an urban area has. So like, I mean, my parents just got internet in December, at my childhood home, they still don't have like cable TV never have never, never have didn't reach our house. So where do you get your news, if you have dial up internet that can't support watching news and you don't have a television that can get the news? While you can get it from the newspaper, you can hop on your phones, my parents could get it from work because they worked in urban areas. So they still had we still had a lot of options. But if you don't, where are you getting your news? If you're not getting it from you don't have the choice of NPR and CNN and Fox and MSNBC and all that, you know, you have that you have. So what do you have you have a newspaper. Those are very sadly kind of dying out, you know, which makes me really, I love our local newspaper. It's so cute.

sarah kearns 46:28

And there’s not very much science content or medical content in most newspapers.

ellen brennan 46:32

Not at all. No. And when you get down to like the local newspapers, they're really just wonderful community stories that do a great job of keeping the community a community, and keeping them informed of the important things they need to know like about local politics or changes in school or what's happening in the region, though it really great for that. Medical communication, science communication, that's not their purpose. And so it's not where you're going.

We have radio, which is still awesome. And you can get VPR NPR on the radio, but there's not a lot of options, you know. VPR NPR, that's the main radio news source. And what if I don't want to listen to those? What if that's not my outlet of choice, right? So now, I'm not getting it from that either. Maybe I'm getting it from TV. And there are some newscasters or news stations that have done a better job at getting outreach to rural areas, or just non urban areas than others. And so we have a smaller pool that we get to choose from there. And then another main section that we might be getting our news from, it's just our neighbors, or in terms of science, communication, and medical communication. The family doctor 100% is a really trusted person as they shouldn't be like, I hope everyone gets to trust their family doctor, that is something that everyone should have the right to. But, um, and that's it. It's a smaller pool.

sarah kearns 48:00

I imagine that it put so much pressure on that family medical doctor to know so much information.

ellen brennan 48:07

I'm sure it does. And so now like, this smaller pool of information. It can't cover everything. It's not always going to be right. Because it's impossible to be right all the time.

Yeah, there's misinformation and disinformation, for sure. And in order to kind of try to address that, the first and most important thing we need to know is where are these communities getting their information? Because, in, you know, where I work, it's easy. If someone's like, “I heard this, and I'm a little concerned, I don't know if that's real,” I can send them a bunch of links, the papers, or to, you know, press releases, or to, honestly just a bunch of links, or I can hook them up with people who could get up a specialist who go on a zoom call, then reach out to them, I can send them to centers, physical centers that are right here in the city, that specialize in these specific topics. And they can talk to someone, they have a library, a public library that they can go to, that has a wealth of amazing information, and they can get there for free on public transit, or just walk because it's right there. I can't give any of that to someone who lives in the town that I live in and doesn't have an afternoon to dedicate to this and a car or a fiber optic. You know, they're one of the 70% of homes that doesn't have fiber optic internet.

So how you combat misinformation or disinformation is first to understand where are they getting their information and seeing if You can somehow get information to that same source. That has to be your outlet of choice, because you can't demand. Well, you know what you're wrong. So you take the half day off drive out here, to me in a car that maybe you have, I don't know, yeah, gas is a million dollars a gallon, and learn from me, that's a deficit model of communication that is not giving them space to, you know, do what they need to do that is not respecting the needs, or the expertise of that community. Yeah, that's a challenge.

Putting Pressure on Policymakers to Improve Infrastructure

sarah kearns 50:39

You've kind of alluded to how researchers and medical people and policy people can sort of meet the community where they are at like a more of a social level that I'm kind of curious as to what you think other cultural or infrastructural changes need to change to improve accurate resource and information sharing between researchers to the communities and vice versa. And sort of more broadly, if there's any changes or evolutions that you're seeing now that are encouraging?

ellen brennan 51:22

There's a lot that's encouraging that's going on right now. And there's also Yeah, there are cultural changes that need to happen, infrastructural changes that need to happen. So I think the one that we this, we've made really clear infrastructural wise, is that utility access in rural areas just needs to be expanded, and that's on policymakers. And there's a lot of programs in the state of Vermont in the state of Maine, specifically, to help get access to different utilities, especially internet more widely accessible across the state, there's subsidies you can get. So to help paying for these costs.

The trick is you have to know about these programs. And oftentimes, the way to sign up for these programs is online or through a phone number that you felt find by Googling them, but it's okay. Well, we will get there. But there's a lot of infrastructural change that needs to happen if rural areas are going to have equitable access to resources and to health information. And there's nothing that researchers or scientists can do beyond putting on that pressure, because that is a policymaker thing that is we need to allocate resources funding actual physical resources, building construction projects, to this work, and we have to do it well, because we have to acknowledge that we can't just run, you know, fiber optic cable line through every piece of land. Yeah, land doesn't belong to you. I had one person we were talking about water. Because that's also an issue though, the water rate you get about my house is really great. I think we get about six gallons per minute, which is good, that's good water pressure. Where I work in the city gets about 25 gallons per minute, which is also really good water pressure, you know, they're both completely livable. Of course, if I'm a farmer trying to maintain, you know, hundreds of acres of farmland, six gallons per minute might not cut it. Yeah. And so someone suggested they actually they run. They also run some kind of agricultural stuff. And they said what we did was we drilled four wells on the property. And that solves the problem. I was like, you had space for four wells on your property? Yeah, yeah, you had the finances to drill for Wells, I'm selling a lot of money. And then to maintain and use that, like, that's a huge ask. And that's not actionable. For all places.

And it's the same thing with broadening these utilities, we're not going to be able to build cell towers on every single part of land because that land is used by the farmers by conservation, by the tribes who rightfully own a lot of the land in this region, particularly, like, we have to come up with ways policymakers have to come up with ways to get these resources and utilities out into the rural regions without compromising the morality of that region. And that is a hard ask, and it's they have to follow the same process that we have researchers have to follow.

You have to engage the community They have to get their buy in, and they have to learn from that expertise. But those are infrastructural changes that really need to happen is we need to get them access to information, equitable access to information, which in this day and age is pretty much the internet. And then the ability to reach science and healthcare. And that doesn't mean building a giant Hospital in every single town, you know, what that means is having an effective transportation from every town to those hospitals, that doesn't cost someone $5,000 for an ambulance ride. It means having a system set up where employers can feasibly give their employees sick pay, or the ability to take a day off and go very far away for an important medical procedure or just a yearly checkup. Because those are important to not be penalized and not lose a day's worth of pay, not have to worry about not being allowed back the next day.

There's a lot of things that need to happen before equitable access to information and health care is possible. And the more widespread and diffuse kind of spread out in rural region becomes, the harder that becomes, but that's, that's on the policymakers, they got to figure that out. But as researchers and scientists, we can use data to push them, right, we can say, Hey, look at all of these health outcomes that are different, there are significant disparities between someone with this health condition. In Burlington, Vermont, their health outcome is probably a lot better than someone with the exact same health condition out in Essex County in the Northeast Kingdom, which is our most rural county, because they have the geographical access to all these resources if the other person just doesn't. And so we can use that data to show policymakers, “hey, look like this lack of infrastructure, this inequity here is potentially literally killing people. And we need to do something about it to improve the health of our entire region.” And that's how scientists and science can mobilize that sort of infrastructure change.

It's not down to just the policymakers, that's going to require us taking what we've know and love best, which is data and translating it out of that nature paper and into something that is going to push a senator to say, “oh, man, we really need to address this and to write a bill.” It's another language that we need to go into. And there's a lot of really effective programs for that, which is really great. I think the science policy sort of world is blowing up right now. Especially during COVID. Yeah, that the need for effective science, communication and information. And then policies to be made based on that information. Was really blatantly shown. I thought it was kind of funny that the director of NIH was, you know, the he they asked, What would you have done differently? Or what did you expect? And they said, Oh, you know, I, in hindsight, we should have funded the social sciences more and public studies more on population, science, and more, because we just never could have expected, you know, this many people not wanting to get a vaccine and not trusting science. And it was like, well, two things. Just because they don't want to get the vaccine doesn't mean they don't trust science.

sarah kearns 58:44

Yeah. That narrative drove me crazy.

ellen brennan 58:47

It just means that they're scared. Yeah, they don't have access to the vaccine, or they just have some freaking questions that we're not answering. Or maybe they don't trust science. Okay, that's possible, too. But they are not the same thing. And to a Yeah, we did expect it. Public health specialists, social scientists, all these things that you say, oh, maybe we should have funded because no one could have seen this coming. They saw it coming. Yeah, they really did. And you should fund them. You're right. But because of this, that kind of kind of blind comment that they had made. I mean, that that is happening,

sarah kearns 59:26

More assumptions and more bias about what those what those what those scientific fields are even so like the communicate amongst scientists also.

ellen brennan 59:36

That's the cultural change. That's the most important cultural change that I think needs to happen because there's a bunch of infrastructural changes is not from outside, it's from within science. I think the cultural responsibility, the cultural shift that needs to occur if we really want to support effective science, communication and public access to this information and It is tough to break up the club a little bit.

And I'm guilty of it. You know, one, we have our jargon. And we love our jargon because it's the best, most effective way to communicate with each other. And there's nothing wrong with that. Jargon is not a bad thing. It's not scary. And it doesn't make you a bad scientist if you communicate, losing all those big words. But that's the only way we can communicate. We've done our science a really big disservice. And then, the other thing there is why are you know why? I want to say this in a good way, and not a way that I will dislike later. Why is this there? Why is there this hierarchy of science? Why are some sciences better or more important than the other ones? I'm not gonna lie. I'm a neuroscientist. Okay. I think it's pretty cool. I think it's one of the best ones. Um, I was a little bit of a jerk, I was a little punk in undergrad, I thought neuroscience was better than psychology. Because psychology was the softer version of neuroscience. What is soft, even me? And why does it matter? Psychology is the application of neuroscience in a lot of ways. And if when, I mean, discovery, for discoveries, great. I'm a big fan of just information and knowledge. My whole research was basic, it was not meant to save lives or change the world, it was just to figure stuff out. And that's really important. But if it comes down to trying to make the world a better place, we want to apply the science. And that's a lot of times what these softer or social sciences are doing. They're taking our complex, you know, high and mighty findings, and saying, How can this actually impact the world?

And so they're just as important because if we discover big and important and cool, but very complex things, amazing, phenomenal, very successful, super proud of you. If we don't take it anywhere, don't do anything with it. It's still important. But is it also important to take that cancer treatment that's super effective, and give access to the community hospitals as well? You know, like, there's more important you think, anyway, so some people, it's gonna be way more important.

I'm just not trying to not belittle especially not a little basic science, which is just trying to figure out how things work without that kind of bigger idea of how can I use this to improve human health or, you know, change the world, because knowledge is important and furthering our understanding of the world is very important. But applying that understanding to actually making the world a better place. That's so important to unless the balance, I walk as like a basic scientist, I will never, not let it get its time in the spotlight. But clinical and translational research and all the stuff that's going to go out and actually impact society is really what's driving the world forward in the way that our communities can feel, and the way that they'll notice in the ways that they'll understand. And it's the softer sciences and social sciences, whatever that are making sure that happens. And so the fact that we have this kind of hierarchy within science, and not everyone does, but like, I consider myself a pretty open minded person. And there are two years in my life, probably where I was like, Oh, I'm cooler than psychologists because I'm a neuroscientist. It's not how that works. Yeah, like, come on, I have an expertise, and it's different than theirs. But both of our expertise is are very important.

sarah kearns 1:04:17

And on the other end you have psychologists all just being like, “my research is more important than the neuroscience,” haha.

ellen brennan 1:04:22

And you know what? You're right. And you're wrong. And I'm right, and I'm wrong. We have, we need to just take this make this cultural shift where we go from like, the harder, harder. I don't even know what that means. But one science is better than the other one, science is more important than the other. Because in the end, if you think about the things that have really made a difference in the world. It's almost always been the interdisciplinary ones. It's when we put those little policies aside, and you have the social scientists working with the physicist working with the psychologists working with the oncologist and you have this team with a wide variety of specialties that can all hone in on this one question and solve it together in a way that's actually going to make a difference to like someone's life.

sarah kearns 1:05:18

There’s so many people involved in that too. And not just like this elite specialist group.

ellen brennan 1:05:25

Those are the ones that are gonna have an impact. And so it's when we get rid of this little hierarchy and kind of become a melting pot. And I like that phrase, either. But when everyone gets equal footing, everyone's the equal partner, because everyone has an expertise that matters. Yeah.

sarah kearns 1:05:46

True community, then when you have types of experts on the same page.

ellen brennan 1:05:51

Exactly, yeah. And that's what that's the cultural change that I would love to see in science, and it is happening in science. I mean, the NIH director said, “shoot, you know, we should have done this.” And so that's a pretty big level of recognizing that that sort of relationship or community within science needs to exist. But it's also a choice kind of that individual scientists can make. It's so hard to ask an individual to fifth fix a systemic problem, you know, so that's not what I'm doing either. But a cultural shift, where scientists recognize each other's expertise, as equally important in the grand scheme of things, which is also asking you to recognize that your expertise is not important.

And then take that one step further, and apply that same exact mentality that all of the scientists are equal. Put, now, let's just get all the non scientists up on that same step, let them all up there with you too, because it's hard enough for us to be like, the archaeologist and — I'm trying to think of like two very different fields — the brain surgeon on the same footing, because one of them is learning about the history of the world of humanity. And that's really great. And one of them is taking tumors out of people's brains. Like, that's an easy assumption to make. But they're equal footing. Now, can you say that the farmer is also equal footing?

Because they, the taxpayers fund most of our research, so you should probably value them. And we do value them. It's just all the way from the back in the beginning of our conversation, we come in with a story, we come in with this idea and this grand idea of what questions we want to answer. And little by little, we have to get down into the details and down into the details, and we get bogged down. And we don't love it all the time. But very slowly, you get farther and farther away from that big grand story that you are so excited about. And you get excited about these details in the story is becoming clearer and clearer. But the more granular it gets, the farther away we got from that initial step where we thought we were on equal footing. And I don't know if something about that process just kind of turns us into closed minded, I guess, because we have to shut out some things to focus on these. And then it's just so hard to get back. Yeah, no bigger thing, because you spent five years thinking about these tiny, tiny details. Yeah. How did I even explain, like, Well, how did I learn? What was my intro to neuroscience class, even about?

sarah kearns 1:09:10

That’s one of those cognitive biases, like the curse of knowledge or something, right? You forget.

My interpretation of what you just said is like, when you're telling that story, and narrowing down to the details, everyone has to be a part of that story formation. It can't just be the medical doctor being like, “now I'm going to tell my highly detailed story.” Instead, everyone needs to be part of that. Part of that narrowing down to actually be able to come to the nugget of the thing, that one that everyone cares about and to that like it feels possible.

ellen brennan 1:09:47

Right. Yeah. And they they all will be part of it if we do it correctly, right. Because medical doctor will come to one very One minute thing that they can understand, which is great. But the, you know, the rocket scientist, will she is going to come to another perspective on that same little question that could be applied in a new way. And when you have all these different perspectives coming in on this same tiny, tiny detail, you have, essentially, a million new ways you can try to solve this problem, one of them's gonna work, and it's probably going to be the ones that all mixed together. But I think another thing that you said is important is that yeah, everyone has to care about that detail, too. Right. And I think caring is, is really important one, they have to care about the detail. But two, this kind of goes back to what we were talking about earlier. How do you establish trust? Yeah. between parties? How does a community establish trust with a researcher? How does a researcher establish trust with a community? Know, they have to know that you care, no one is going to give a hoot about what grand knowledge you have to impart unless they think that you're imparting it for a good reason, because you care. They don't care what you know. Until, you know, they know that you actually care about the problem.

When it comes to hard topics, like COVID, or vaccines or I don't know, pesticides. Sometimes it's not about answering the question. It's just about listening to the questions that they have. No, and because a lot of times behind the question is the worry is the concern. And that's what we really want to address is not the cause. I mean, if at this point, we're a researcher or scientist and someone's engaging with us, they probably already know both sides of the argument. I don't think you're going to tell them anything that they haven't read or heard at least tangentially. Maybe they didn't take it in. Maybe they didn't understand it, but they probably heard it because they sought you out. And that's already a really big step. And they're going to ask you questions now. And it's really important.

The same thing is gonna go the other way. You've heard these questions before, you definitely have. But you need to hear them for the first time you need to respond like you're hearing this question for the first time. Because there's a chance they've asked this question to a million people, and they're trying to trap you, right? That's what people are like, “Oh, well, I do science communication. Someone doesn't believe me. They're gonna come in, and they're gonna ask me all these questions to try and trap me and make me look that into their questions.” You're not gonna look bad. Cuz if you're a jerk about it, you're gonna look that.

Instead, ask them questions to try to understand why they're asking. That's actually a great tactic. For this very rare case, where someone comes in to be a problem, they came in with an agenda not to learn not to understand but because they disagree with whatever message you're giving. And they want to make that clear. If you engage in a conversation, and ask them questions about their questions, try to get to the root of why “Okay, I understand. Could you tell me a bit about, you know, a, why is that? Why are you concerned about this?” You're either going to out them, that, you know, they will get stuck in their own argument, because they're just trying to have an argument, or you're going to help them get to the actual cause of why they're so fired up about this. And you can address that cause. So you still kind of get to help.

The other thing is sometimes someone's going to ask question, and maybe you've heard that question a million times before, but maybe it's the first time they've asked it. Yeah, maybe they're really scared, or they're just really confused and asking questions. It's hard. So if you listen to that question, and even if you've heard it a million times before, if you say that is a really excellent question, and you just start answering it as if “Oh, man, this is? Wow, what a question. Let me think about this. I'm gonna understand why we came to this question. We're gonna have a whole dialogue about this.” And what an experience that was for the person who thought of this question. Yeah. And if they've asked it a million times before, do you think they've gotten that good of a response a million times before? If they don't have to ask this question again now, maybe they will still keep asking it because they're just nervous and that's okay. But you gave them a little bit of reassurance that like, “Hey, your concern is valid. Your question is valid. You are not stupid for thinking of that question. You are not incorrect. I think that's a really as the expert quote unquote, in this sciency situation, I really value that question.” That's, that's a huge impact that you can have. Yeah. So I don't know how we got to this point. But it's an important point. Yeah.

sarah kearns 1:15:35

No, I think it's, I think that's maybe maybe a good place to, to end to since like, it sounds like the, the way, the way to build community is to build like care through trust and time and attention.

ellen brennan 1:15:56

Yeah, it's a big thing. You're trying to create a relationship. You have to approach us with the same amount of dedication and care that you approach your friendships and your professional relationships with your science colleagues, because that's who these communities are.

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