Episode 58 | Dr. Rachel Bergmans, PhD, MPH – BETTER TOGETHER, A COMMUNITY-BASED APPROACH

Dr. Rachel Bergmans, PhD, MPH is the Administrative Director of the Office of Community Outreach and Engagement at the University of Michigan Rogel Cancer Center.  In addition, she is also a Research Assistant Professor in the Department of Anesthesiology. Her background is in epidemiology and public health, with research spanning integrative medicine, social determinants of health, chronic pain, mental well-being, and community engaged science. 

Dr. Bergmans has worked across a variety of environments, from academic collaborations in Madison, Wisconsin, and Ann Arbor, Michigan, participatory programs with veterans and lupus advocates, to educational and health-focused initiatives in Thailand and Zambia.

See Dr. Bergmans' links below:

Community Engagement: Collaborating for Change | Michigan Online

Community Outreach & Engagement | University of Michigan Medical School

Transcript

SPEAKER_05 0:00

And so these types of ideas are what some call the curb cut effect. So it's where you're designing for those people at the margins, the whole system gets better. Now, curb cuts were built for wheelchair users, but they help parents with strollers like myself, travelers with luggage, delivery workers, and more. And in health research, when we build studies and interventions that work for people with the most constraints, we usually end up with care that's more usable, more equitable, and more effective across the board.

SPEAKER_02 0:37

Our guest today, Dr. Rachel Bergmans, is the administrative director of the Office of Community Outreach and Engagement at the University of Michigan Rogale Cancer Center and a research assistant professor in the Department of Anesthesiology. Her background is in epidemiology and public health with research spanning interventive medicine, social determinative health, public pain, mental well-being, and community engaged science.

unknown 1:01

Dr.

SPEAKER_02 1:02

Bergman has worked across a variety of environments from academic collaboration to medical Wisconsin and adapt initiative to participate work of the Confederate advocates to educational and health focus initiatives at Highland Academy. As always, I can be reached at Afton at Aftonhazit.com. Hi, Rachel.

SPEAKER_05 1:26

We're so happy to have you on the show. Welcome. Thank you so much for the invitation, Afton. You've been such an inspiration to me as a colleague, an author, someone who's mission-driven in your research. I've really been looking forward to catching up with you and having this important discussion.

SPEAKER_02 1:42

I actually feel bad we should have had you on sooner because this is such an important topic and something that's really timely now. So I think this is a great discussion for us to have. Not only for researchers, a lot of these folks listen to the show and think, you know, how do I, you know, do better research and really involve the community, but also for people with chronic pain to think I would love to be involved or love to understand, you know, how our perspectives are taken into account. So kind of with that, um, community-engaged research is really important for many, many reasons. You know, we just had Tom Norris on the podcast a couple of weeks ago. And he is a personal lift experience, um, uh someone who is really active in the advocacy community and very involved in supporting researchers as they think about how to do a better job of bringing in the patient voice. Um, we just find that when we have these partnerships in our research, that what comes out of it is just gonna be more, just more applicable to people who live with lived experience. And so we're gonna dive into issues of representation and our you know, our use of patient partners in research and you know, and other you know key aspects. But before we do that, um, I'd love to have our guests share a little bit about themselves and you know how you first kind of became interested in this area.

SPEAKER_05 3:07

Yeah, so a little bit about me. I'm originally from Canada and I spent part of my childhood in a small town. Growing up, I was naturally drawn to community involvement, things like helping at food banks, tutoring English as a second language, and volunteering through programs for people with physical limitations.

SPEAKER_02 3:26

Yeah. So when you reflect back on that time, well, you know, was there a particular early experience that was, you know, especially memorable to you or you kind of struck a chord?

SPEAKER_05 3:37

Yes, several. Um, one was I volunteered with an adaptive ski program that served people with quadriplesia. And it really shifted my perspective. It wasn't some huge heroic gesture. I was basically just changing my own routine where instead of skiing by myself, I used that time to ski with someone else. But just that small shift had this really big impact. It opened up an experience that wouldn't have otherwise been accessible. And it honestly made skiing more fun for me. And it created this sense of community, not just between me and the participant, but among the families, the other volunteers there, really that whole crew on the mountain.

SPEAKER_02 4:16

That's that's really neat. That that that's a that's an interesting shift. And often what we don't do is to kind of get out of ourselves and and open up to bring in somebody else. So, so what did you really take from that experience?

SPEAKER_05 4:28

Yeah, so I would say these experiences taught me pretty early on that access and inclusion, you know, these abstract terms actually have more to do with design than ability.

SPEAKER_02 4:39

Yeah. So when I think about you and the role that you fill in our center, I think about yes, the work that you do in community engagement, but I really think of you as really being a marvelous mentor and really valuing teaching. So how does how did that kind of influence your path?

SPEAKER_05 4:59

Well, thank you for that. I really do have a love for health-related education. So tutoring was a start, but later I taught elementary school in Bangkok and I helped found a community kitchen that offered programming and how to cook healthy and flavorful meals while also on a budget. And then in my academic career, I found a lot of meaning in teaching undergraduate students and mentoring junior investigators. So it's just something that's consistently one really important to me and something I've gotten a lot of meaning and purpose out of.

SPEAKER_02 5:31

Yeah, me too. I just nothing I love more than my mentees and teaching. It's just it's just a gift and an honor to be able to need to be asked to do that and they even pay us to do it. So so when did these experiences of community-based activities and education start to kind of connect with your research experiences?

SPEAKER_05 5:53

Yeah, I would say it definitely took some time, but I totally became more and more aware of the depth behind those personal identities, things like food and cooking, and most relevant for today, people's healthcare journeys. I kept noticing how those stories often contain this kind of wisdom that you can't capture with a standard survey or some of those other methods we use in research. And when academia loses sight of community knowledge, the science suffers, not just ethically, but practically, our findings end up less relevant and less usable.

SPEAKER_02 6:28

Yeah. I mean, that's that's really a smart observation. So taking that, how does that actually change your work?

SPEAKER_05 6:37

Yeah, it made me shift my focus not just on community, isn't just who we recruit, but being a real collaborator. It's helped me surface my blind spots, what I'm assuming, what I'm not asking, what I'm measuring because it's convenient or what I think is important relative to what the community feels matters to their most immediate needs. But it's also more enjoyable. So making discoveries together, pressure testing ideas with people who live these realities. We often study from afar as researchers, and then thinking about the dissemination beyond the conventional route of papers and conference presentations, just really takes research to another level. It's also pushed me to ask how do evidence-based strategies reach communities faster? You know, it can take over a decade for drug development to reach patients and just think about the other types of formats and channels that people will actually use for what we're producing.

SPEAKER_02 7:36

And it is heartbreaking that it takes us so long to get, you know, they say bench to bed site, right? How we get our research into the community. I think we're doing better. I think there's a lot more kind of digital applications and certainly an awareness to try and speed these advances to community populations. But yeah, we have a long way to go. So if you had to name what kind of lies at the heart of community engaged research for you, what would that be?

SPEAKER_05 8:07

Yeah, I guess to put it simply, I'd have to say conducting research that responds to the priorities of people most affected and designing studies, the results can translate into public health benefit and patient care, like standard of practice.

SPEAKER_02 8:23

Yeah. I mean, this is always important. Why do you feel like it's particularly important now? I know this is something that you talk about.

SPEAKER_05 8:32

For sure. I would say I've noticed, and I think others as well, is that there's this widespread distrust in academia and medicine. And this ivory tower syndrome is part of the problem where research feels inaccessible compared to the other types of information around health that people can find instantly online. And so when research feels distant and unrelatable, people disengage. We also know engagement is especially low in those communities who already face worse access to health care and poor outcomes. So when those communities are missing from our data, it limits our ability to develop treatments and standards of practice that worked for everyone. So a basic example is who can even participate in research. If studies mostly include those who live near an academic medical center like the University of Michigan, people who can drive to appointments, who have reliable internet, we're actually learning from a very narrow slice of the population. And we're missing what it takes to make therapies workable in places like rural settings that are geographically isolated, low-income communities, and groups of people who have more complex health burdens than the average person.

SPEAKER_02 9:44

Yeah, you're you're hitting the nail on the head. It's really, really timely. And it is a broad problem, right? So we as a research community do think about this a lot. So, you know, it if you think about researchers who are just launching their careers today, I don't think they realize how much early biomedical research and really research up until the last couple of decades was conducted mostly or almost solely on white men. So why does representation and research really matter?

SPEAKER_05 10:18

Yeah, so representation matters for several reasons. And the first one I want to make really clear is that it's about scientific accuracy and patient safety, not just this idea of fairness.

SPEAKER_02 10:29

Yeah, I I could not agree more so. So um, so where do you tend to start when you're explaining to a non-research person or people who are not involved in researching communities? Where do you where do you begin here?

SPEAKER_05 10:45

Yeah, so like you mentioned, Afton, one clear example is sex and gender. So historically, women were often excluded. Yeah. In 1977, when we look historically, the FDA recommended excluding women of childbearing potential from early drug trials.

SPEAKER_03 11:03

Yeah.

SPEAKER_05 11:03

This was largely out of caution after tragedies like thalidomide, where this medication taken during pregnancy led to thousands of babies being born with severe birth defects, including major limb deformities.

SPEAKER_02 11:18

Yeah, that was a horrible uh point in research and really a huge setback. Um, it created a major gap, didn't it?

SPEAKER_05 11:28

Yes. So while the intention was protect uh protection, the result was actually this major knowledge gap. Like you mentioned, we end up using medications broadly without enough data on how they work in women, even though biology, body composition, these things can affect metabolism, dosing, and side effects. So, in fact, many adverse drug reactions are more common in women. And several drugs pulled from the market in the late 90s had greater risk for women. So when representation was missing, it wasn't just leaving people out. We were building clinical guidance, clinical practice on incomplete evidence. And, you know, despite progress we've seen since the 70s and 90s, women still are underrepresented in many areas of medical research today relative to their burden of disease and those health conditions of most importance among women.

SPEAKER_02 12:22

Yeah. And then we certainly see this as this critical in pain research. You know, we know that most chronic pain conditions affect more women than men. And, you know, in medications and interventions that are directed towards men are, you know, have very little generalizability. So yeah. Um, and then we also want to think about how you would approach representation when it comes to race and ethnicity.

SPEAKER_05 12:46

Yeah, so the same logic that we think about with sex and gender also applies to race and ethnicity. But it's important here to be really precise when we're talking about what do we mean by race? So race is a social construct and it's a weak proxy for genetic ancestry. And it's not, you know, correlated as this indicator of biology. So when we see differences across racial groups, the first question shouldn't be what's different biologically, but what's different about people's exposures and circumstances? Things like housing and neighborhood conditions, chronic stress, environmental hazards, access to high quality care, and whether the systems people live in have treated them fairly. Yeah.

SPEAKER_02 13:36

I cannot emphasize how compelling this shift in our thinking is. I know there's a lot of wonderful research coming out of the University of Florida. They do a lot of thinking about, you know, the role of race and pain research and have really kind of ripped open, you know, a wound that we need to revisit and to think about more critically. So when when you think about what are the big drivers of this, you know, what are the drivers of differences?

SPEAKER_05 14:08

Yeah, in many cases, it really is that lived reality of race in our society. So the cumulative effects of structural racism and policy decisions, including historical policies like redlining and segregation. Um, these forces shape risk over the life course. They influence how severe someone's condition is when they finally are able to seek care and even change what treatment looks like once they enter the healthcare system.

SPEAKER_02 14:38

Yeah. And so, how would that translate into what we can and can't conclude from our studies?

SPEAKER_05 14:45

So, if our trials don't include the communities carrying a large share of the disease burden, so for example, black patients and lupus, then our estimates of benefit side effects and even which outcomes matter can be off.

SPEAKER_02 15:00

Yeah. Yeah, and way off too. Um so can you tell us more about how we got to this point? You know, why are certain groups routinely excluded from research in general?

SPEAKER_05 15:13

So, one of the reasons is many communities have a justified distrust of medicine and research because of both historical and ongoing harm. This includes examples like the non-consensual use of Henrietta Wax's cells. And that issue was only resolved around 2013. Like while it seems historical, it's it's actually quite this recent uh timeline of events. There's also the Tuskegee syphilis study where people with a condition weren't given best standards of care knowingly, but they weren't informed of that. And then there's these present-day experiences of having pain symptoms dismissed by a clinician. One of the seminal works around race disparities in health care comes from this observation that physicians in training viewed people who are black as having a higher pain tolerance just because of the color of their skin, which isn't true. And so, if people don't trust academic medicine, they're not going to seek care, they're not going to enroll in studies, and they won't even necessarily use the treatments we produce. So our science becomes less generalizable and less useful. But I also want to emphasize that underrepresentation isn't only a participation or recruitment issue, even though it's often framed that way. It's also a decision-making issue. When communities aren't included in those upstream choices, exclusion gets built into the research before recruitment even begins.

unknown 16:44

Yeah.

SPEAKER_05 16:45

On top of that, it's not just a clinical trials issue. So it also matters in basic and bent science. Much of our research is publicly funded through tax dollars. Yeah. If people can't see how science connects to their lives and communities, it erodes research sustainability and slows progress for everyone.

SPEAKER_02 17:05

Right, right. So it really is incumbent on us to communicate better, to to we've started to think about this a lot. You know, how do we develop graphic abstracts? How do we get the word to the to communities? How do we even inform the participants in our studies about what we're learning about the data that they helped us gather? So it yeah, it's really, really a critical point too, this this communication. So what are the what you know, how how can we do a better job of addressing underrepresentation?

SPEAKER_05 17:38

Yeah, that's a great question. And I would say more often than not, underrepresentation isn't intentional, but it does come from choices that researchers make. Things like where is a study located, whether people can get there, whether their time is compensated, whether internet access is required, whether the measures fit people's lives. These choices are often constrained by budgets and other structural realities. So representation is again this design issue. If we want research that works in the real world, then the real world has to be in the data. So making science more accessible, more accountable, and more likely to deliver on its promise.

SPEAKER_02 18:40

And so it's really important. I and I and I say this because we really want to convince anyone on the fence about the importance of understanding diverse perspective and research studies. It just deeply matters. And unfortunately, politically, there's been a shift away from this approach, and um that concerns most of us. So let's begin with the notion of patient-centered research. What is it and how does centering lived experience lead to better research and better results?

SPEAKER_05 19:13

Yeah. So when we're talking about patient-centered research, it means the research is essentially designed around what matters most to patients. It asks from the start, what questions are patients actually trying to answer? What outcomes would change their decisions or daily lives? What types of trade-offs are acceptable to them? Then it builds the study around those priorities, not just what's easy to measure, what's most publishable, or some of those other things that researchers may also be uh weighing and valuing when they're conducting their work.

unknown 19:52

Yeah.

SPEAKER_02 19:53

So when we sit there with our study before us, can you give us some idea about the questions that we could ask themselves to see if the study we have here is truly patient-centered? We think it is because we talked to a patient or two or we thought about burden, but you know, really, what are the questions?

SPEAKER_05 20:12

Yeah, so there's several that might you might bring to mind when trying to figure out how patient-centered is the study before me? You know, thinking not just did the pain score change, but can someone work, sleep, think clearly, be present with their family, exercise, and feel like themselves again? Yeah. Are we measuring outcomes that reflect real life, function, fatigue, side effects, and practical burdens like cost and time of any type of intervention or treatment? Questions like, have we built in room for patient preferences and trade-offs? Recognizing that some people prioritize fewer side effects while others prioritize speed, convenience, or independence. Another question might be is participation realistic for people we hope to serve? Did the logistics work? Things like that you mentioned, like providing transportation incentives and places for people to stay if they're traveling from far distances. But there's also things like disability accommodations, language access that are worth considering. And then we also need to consider if the results results are going to be communicated in a way that patients can actually use. So then that someone can understand what we learn. Also, what are the gaps or what are the limitations and what might it mean for them making the right health decision for them as an individual or in the context of their family? I also want to highlight here that it's important to note patient centered isn't the same as community engaged. So patient centered research focuses on centering patient priorities and decision needs, whereas community engaged research focuses on partnership and shared power with the public and community groups. They do often Overlap sometimes or used interchangeably, but you can be more patient-centered even within traditional study structures by changing the question, the outcomes, and the burden of participation.

SPEAKER_02 22:12

Thank you for defining that. I think so many of us kind of use the terms interchangeably, just you know, meaning that we are somehow engaging patients. But there are there are two aspects to it. And if you're not kind of doing both, you may not be fulfilling kind of this goal of having truly patient-centered or patient-engaged research. So tell us a little bit about how including a focus on underrepresented or marginalized groups actually can improve the health for all of us.

SPEAKER_05 22:41

Gosh, I really love this question because I think it's um one of the areas that is maybe most unclear or most misrepresented. So prioritizing the perspective of marginalized and especially disadvantaged groups is really important because it can actually improve the health for everyone by making science more accurate and more real world. When we only study people who have the easiest access to care and research, we end up designing treatments and care pathways for best case scenario. And most patients don't live in that scenario. So in those cases, like who gets left out? And it's actually quite a lot of people, patients in rural areas, patients or people with disabilities, people who don't speak English as a first language, people who work hourly jobs and can't take time off, people without reliable internet, uh lower health literacy. Um, you know, the list goes on. People with multiple chronic conditions who are often excluded from trials because they're considered too complex.

SPEAKER_03 23:43

Right.

SPEAKER_05 23:44

However, if we're trying to adequately include those groups, then we'll be able to discover things that truly benefit everyone.

SPEAKER_02 23:51

And it makes our job harder because we need to plan and think about all of this. And the too complex is a common problem in pain research, that you know, we want to make sure we walk away from a study that the participants in the study actually look like the patients that are seen in tertiary care centers. And so it, you know, it is important to really not shy away from some of these aspects. They might make things more challenging, but it's going to make for better research. So when we do improve inclusion, um, what are the benefits?

SPEAKER_05 24:28

Yeah, and I think when it comes to this, it's really thinking about like those long-term goals that we care about in research and medicine. And with inclusion, by promoting it, we can find problems earlier. So, for example, studies that intentionally include people with lower literacy or limited English proficiency can often reveal where instructions, consent forms, and medication labels are confusing. So when you redesign communication to work for those individuals with the biggest barriers, it usually becomes clearer for everyone. And then when we build interventions that work in real settings, so that again, if an intervention only succeeds when someone has time, money, transportation, it's not that scalable. Designing for people with fewer resources tends to produce models of care that are simpler, more flexible, and easier to implement across the whole population. One classic example is the original framing heart study, which represents a hugely influential program of work on how we understand cardiovascular health today. But because this study was predominantly white in its initial recruitment, the risk equations weren't performing as well in other populations. And so later, more diverse cohorts helped improve our risk predictions, which now equips clinicians to better serve all patients. Inclusion helps us identify structural determinants of health we'd otherwise miss. So one example is asthma. So research that includes communities facing higher exposure to air pollution, substandard housing, and allergens has helped shift solutions beyond here's an inhaler at the individual level towards more population-focused solutions, things like housing interventions and environmental regulations and policy, and community-level prevention. So it decreases risk for everyone. And this kind of system thinking has far-reaching health benefits beyond that original target of addressing asthma loan and those needs of this more vulnerable population. And so these types of ideas are what some call the curb cut effect. It's where you're designing for those people at the margins, the whole system gets better. Historically, you know, curb cuts were built for wheelchair users, but they help parents with strollers like myself, travelers with luggage, delivery workers, and more. And in health research, when we build studies and interventions that work for people with the most constraints, we usually end up with care that's more usable, more equitable, and more effective across the board.

SPEAKER_02 27:24

That is the best overview of a rationale for why we need to consider this more community-based or patient-engaged approach. Because truly, I haven't really thought about all those aspects. I'm nodding my head as you're going through these various benefits, that um it makes sense, especially when we're thinking about the scalability of our interventions. You know, sometimes, you know, again the Ivory Tower, we think about what an intervention might include. We have everything but the kitchen sink, and it requires a quiet place and an internet and the ability, the ability to try to drive and to speak English. It, you know, it becomes an intervention that's very hard to implement in the community.

SPEAKER_01 28:08

So I I I really feel that. There are 86 billion neurons in the human brain. Complex networks connect these remarkable cells so we can breathe, move, think, communicate, and feel pleasure, and pain. Changes in some of these brain networks are thought to underline chronic pain. But these networks are not partwired. Stress, sadness, fear, and loneliness can affect brain networks and make your pain worse. But healthy eating, sleep, and exercise can help your brain make new connections. And so can mindfulness, joy, friendship, and love. Because this is true, the power to create a new tomorrow with less pain and a more rewarding life already resides within you.

SPEAKER_00 29:30

Dr. Hatchett's book, Chronic Pain Research, can be found on Amazon and independent bookstores everywhere.

SPEAKER_02 29:40

So I want to shift gears just a wee bit because it's really kind of in the same area. And, you know, while we're kind of dwelling here, um, let's talk about kind of the social determinants of health. Okay, this is popping up a lot now because we're talking less about diversity, equity, inclusion, but we're still thinking, you know what, there's other aspects that are less about maybe necessarily um race or disability, but just are broad constructs that may better account for some of the health effects. So so talk a little bit about the social determinants of health and why they really matter.

SPEAKER_05 30:19

For sure. So social determinants of health, they're often shortened to this phrase SDOH, are the conditions that shape our health outside of the doctor's office. They're the everything else that influence whether it's realistic for someone to prevent disease, manage a condition, or recover. So SDOH include where you live, what you can afford, what your work is like, how safe is your neighborhood, what food can you access, whether you have reliable transportation, and the quality of the health care that you can actually get. And they matter because health isn't distributed randomly. So laws and public policies intersect with our social norms and values to shape opportunities in our society. Things like who has access to stable housing, good schools, clean air, living wage jobs, and high quality care. And when opportunity is distributed unfairly, the risks that follow are also unequal. So you end up with very real social risk factors. This includes financial hardship, discrimination, exposure to environmental pollutants and violence, harmful encounters with law enforcement, limited transportation, and lower health care quality. Those aren't just background details, they become pathways into disease and suffering.

SPEAKER_02 31:47

Yeah, it absolutely makes sense. So when we think about these factors, how do they actually translate into health outcomes over time?

SPEAKER_05 31:55

Yeah, it's a great question. So there's multiple mechanisms by which SCOH influence health. Some are just basically practical. If you can't get to appointments or afford medications, your health is going to suffer. Some are biological both, things like chronic stress, repeated exposure to adversity. Research has shown can change our physiology over time. And then some are behavioral. But this is where I think it's there's an important caveat that comes in. So we often talk about health behaviors as if they're purely personal choices or someone's culture. But in reality, behavior is heavily shaped by what people have access to. It's easy to say exercise is good for your health, for example, and it is. But are you also considering does this person have a safe place to walk, a park nearby, time after work, childcare, a body that can move without pain? Is there a gym that someone can afford and transportation to get there? The same goes for things like nutrition, which again is considered this healthy health behavior. But eating healthy lands very differently if you're choosing between groceries and rent or even medication, or if the nearby options are convenience stores with very limited fresh fruits and vegetables and more processed foods. So SDOH matter because they shift the conversation from what's wrong with this person to what's happening around this person and what barriers are we expecting them to co overcome alone in order to attain health and well-being. And for research, it matters because if we ignore these factors, we can end up blaming individuals for outcomes that are really being driven by the systems they live in.

SPEAKER_02 33:43

Yeah. And again, it's less about blaming the person, and it's more about the social constraints, right? You know, and those feel more addressable, right? And then and you would impact multiple people, right? You clean up a neighborhood, you put in a food store where a food desert existed, and you change the lives of hundreds, maybe thousands of people. So I know this has been studied. Do you do you have a good example, maybe a study that can help illustrate this for us?

SPEAKER_05 34:15

Yeah, and I really like this question too, because it's actually a critique I got early on in my research was that how can you know changing social risk factors will really make a difference for someone's health versus those who are less healthy are just naturally going to have higher social risk, like unemployment. Yeah. But the data actually show that reducing exposure to these social risk factors can improve health, not just associate with it. A well-known example of this is what's called the moving to opportunity for fair housing demonstrations. Okay. It's a long title, but essentially it was a randomized controlled trial where families living in high poverty public housing were offered housing vouchers to move to neighborhoods with lower poverty and specifically to test whether improving neighborhood conditions would lead to better outcomes. What's striking is that the health effect showed up long after the move. So, more than a decade later, people who were randomized to the neighborhoods with more green space and walkability and lower crying levels had lower risk of obesity and diabetes, as well as higher physical activity and better mental health. So it's this powerful and early reminder in our history of research that when you change the conditions of people who are of where people are living, so safety, opportunity, stress exposure, access to resources, you can change their health trajectories in ways that medical care alone often can't.

SPEAKER_02 35:48

It's so powerful because then you think of the context where perhaps a physician is offering remarkable care, right? Sending the patient to physical therapy, giving them a great medication, um, you know, having them go to visit perhaps a behavioral therapist. And the person goes home and says, Hey I don't have transportation, I can't afford the medication, and you know, who's gonna watch my kid for physical therapy? Right. So it it really becomes the the substrate for good care that we address these broader social factors. Harder to do to do, but really must be taken in consideration, not just in in research, but in general health care. Yeah, yeah. So oh Rachel, I've so enjoyed our conversation. It's been really fun to connect with you. I like that. Yeah, you know, I get we we can certainly say this now, but you know, you were with our group for years, and then you've taken a really wonderful promotion, a really wonderful job to work in the in the oncology space. And so our loss is their gain. Um, but how much I've enjoyed connecting with you today and to hear more about this. So before we we sign out, um, I would love for you to maybe share some of your favorite resources. And remember, we can link these two. So what what do you what what kind of resources do you recommend?

SPEAKER_05 37:07

Yeah, absolutely. So when it comes to community engaged research, an important part of that is making sure that the people you want to partner with have the resources they need to contribute competently and meaningfully. And a great example of this actually comes from a training developed by a colleague of both of ours, Dr. Dave Williams, in collaboration with the Michigan Institute for Clinical and Health Research. So it's this virtual course designed to demystify how research works, ethics, study design, what informed consent really means. So community partners can ask sharper questions and have more influence on the research process. Yeah, this we can share that link. Sorry.

SPEAKER_02 37:50

No, no, I was gonna say that that's a good one, and nobody's brought that forward.

SPEAKER_05 37:52

I'm glad you did. Yeah, we'll put that link in. Anything else? Awesome. Yeah, so if listeners want to stay connected with my team at the Rogel Cancer Center, we love that. We can share our website as well. It's the best place to learn what we're working on. They can join our contact list for upcoming events and opportunities to get involved.

SPEAKER_02 38:10

That's so great. And so we'll we'll add that link too. And the Rogel Cancer Center is just a premier research and and uh and clinical facility at the University of Michigan. So you're not far away. Yeah, yeah. So um, as we wind down here, um, I always ask my guests, you know, what's one question you wish that I would have asked you that didn't ask?

SPEAKER_05 38:30

Oh, sure. Um, I would say maybe what's one myth about community-engaged research that I'd love to retire to.

SPEAKER_02 38:39

Okay, good one. All right. What is it?

SPEAKER_05 38:41

Yeah, so I I'd really like to emphasize that community-engaged research is not something that you can delegate to an outreach team or check on at the end, like some box to check once those real scientific decisions have already been made. So when it's done well, it requires real buy-in from the people with influence, like department chairs, directors, especially the PIs, because these are the individuals who set the tone for whether community partners are treated as true collaborators, whether timelines and budgets make room for that engagement, and whether compensation is prioritized, and whether the team is willing to make real adjustments based on what they're hearing from these community partners. Yeah. So teams like mine can absolutely help. We can make introductions, share best practices, help train your team, um, troubleshoot logistics. But it's again ultimately the responsibility of investigators and team leads to seek out those resources early, be willing to learn new approaches, and sometimes hold different priorities as legitimate because the long-term payoff is research that's more relevant, more trustworthy, and more likely to translate into real life. Uh see, that was a good question.

SPEAKER_02 40:04

So again, um, thank you so much. And I close with one more question for you. Um, Rachel, what brings you joy?

SPEAKER_05 40:13

Oh, well, yes, thanks so much for having me. Um, in terms of what brings me joy, you know, being a parent, spending time outdoors with my family, friends. Um, I also have the the privilege of enjoying my work. Yeah.

SPEAKER_02 40:29

We're so blessed, right? That we do work that we enjoy with people that we really care about and hopefully feels meaningful and uh makes an impact in people's lives. So again, Rachel, thank you for your time. It's really been a pleasure. Thanks for having me.

SPEAKER_00 40:44

If the Chronic Pain Rested Podcast series has brought you some inspiration and hope, please consider joining the community of listeners to help fund our production. Your support is important for us to keep creating content for those impacted by chronic pain. Look for the support the show link in our show notes in each episode. Today's episode was produced and edited by William Haston, made possible by listeners like you, son of a book, and the team, and then you by for elements. Our music score, Just Doom, was produced by Bohemian Roosters. That's it for today. Join us in two weeks for another episode of Chronic Bang!