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Discussion Guide and Transcript
Season Two - Episode Three
Research Ethics Reimagined Season Two - Episode Three “Community Engaged Research with Monica L. Albertie”
- In this episode of PRIM&R's podcast, "Research Ethics Reimagined," we explore community engaged research and its role in advancing health equity, particularly in cancer care. Our guest is Monica L. Albertie, Director of Research Operations for Community Outreach and Engagement at the Mayo Clinic Comprehensive Cancer Center. She provides operational leadership for cancer-focused community outreach and community-engaged research aimed at reducing the cancer burden. In addition to her leadership role, Monica also serves as an Assistant Professor of Health Care Administration at the Mayo Clinic College of Medicine and Science. Listen on Spotify | Listen on Apple| Listen on Amazon Discussion Questions
- 1.) Community Engagement Models
- Albertie describes how Mayo Clinic's community outreach and engagement (COE) work connects their cancer center with communities across a 75-county catchment area. How might this approach to understanding and addressing local cancer burden improve health outcomes compared to traditional research models?
- The podcast discusses the evolution from "one-off" health fairs to evidence-based programs tailored to specific communities. What advantages does this more strategic, measurement-focused approach offer for both research institutions and the communities they serve?
2.) Building Trust Through Participation
- Albertie emphasizes the importance of community participation not just as research subjects but in the actual design of research. How might involving community members in research design help address historical mistrust of medical research?
- The Community Scientist Program at Mayo Clinic trains community members to work alongside researchers. What benefits might this model offer compared to traditional approaches where community members are primarily recruited as research participants?
3.) Creating Sustainable Research Partnerships
- Albertie advises institutions to "start with community first" rather than beginning with research recruitment. How might this approach lead to more successful community-engaged research in the long term?
- The podcast describes how Mayo Clinic has created a "bi-directional engagement" model connecting outreach and "inreach." How might this approach help ensure research questions are relevant to community needs and priorities?
Key Terms and Acronyms
- Community Outreach and Engagement (COE): A structured approach to connecting research institutions with communities they serve, focusing on identifying and addressing local health priorities and needs.
- Community Scientist Program: A Mayo Clinic initiative that trains community health advocates to participate as active members of research teams, providing guidance to researchers from a community perspective.
- Catchment Area: The geographic region served by a research institution or healthcare facility, defining the population for whom services and programs are designed.
- Community Research Registry: A database where community members can register their interest in research participation and specify their preferences for types of studies they would consider joining.
Additional Resources
- Mayo Clinic Comprehensive Cancer Center - Information about Mayo Clinic's cancer research and treatment programs.
- National Cancer Institute Community Outreach and Engagement - Resources on community engagement in cancer research.
- Community-Campus Partnerships for Health - Organization promoting partnerships between communities and academic institutions to improve health equity.
- PRIM&R's Research Ethics Timeline - A resource for exploring the milestones of research ethics, including developments in women's health research.
Transcript
Ivy Tillman: Welcome to Research Ethics Reimagined, a podcast created by Public Responsibility in Medicine and Research, or PRIM&R. Here, we talk with scientists, researchers, bioethicists, and some of the leading minds exploring the new front iers of science. Join us to examine research ethics in the twenty first century and learn why it matters to you. I'm your host, Ivy Tillman. Let's dive in.
Welcome back to Research Ethics Reimagine. Today, we're thrilled to be joined by Monica Albertie. Monica is the Director of Research Operations for Community Outreach and Engagement at the Mayo Clinic Comprehensive Cancer Center. She provides operational leadership for cancer focused community outreach and community engaged research aimed at reducing the cancer burden. In addition to her leadership role, Monica also serves as an assistant professor of healthcare administration at the Mayo Clinic College of Medicine and Science.
Today we're going to explore community engaged research, which is essential in addressing health equity. It's really important in cancer care as well. By actively involving communities in the research process, researchers can better identify and address barriers to care and disparities that impact community well-being. This inclusive approach is important because it fosters trust, enhances the relevance of research, and ultimately improves health outcomes. Additionally, Mayo Clinic's program has scientist program incorporated into their community engagement model.
This program is designed to train community health advocates and healthcare workers as community research advocates. These community scientists are prepared to participate as active members of community engaged research teams in partnership with academic scientists. Monica, welcome to the podcast. It is great to see you again and thank you so much for being here with us today.
Monica Albertie: Thank you so much for having me. I'm excited to chat with you today.
Ivy Tillman: Absolutely. We'll get started. First, can you just share a little bit about yourself and take a moment to explain how your career has taken you to where you are here at the Mayo Clinic?
Monica Albertie: Sure. I was born and raised in Houston, Texas and I spent most of my adult life in Florida. I knew I've always wanted to work in healthcare. Initially, was as a provider. I knew I wanted to be a family medicine physician or OBGYN.
That was the path that I was going to take or that I started. Went to Florida A and M University and originally majored in biology pre med, but took some business classes and realized that, Oh, I like finance and operations. I was actually introduced to healthcare management by an advisor at Florida A and M. I have a pretty traditional health administration background. I did my Masters of Health Administration at University of Florida and I did administrative fellowship.
This was pivotal for me in terms of my career because it was in that administrative fellowship, was in a Catholic healthcare system that I spent half of my time in community benefit working under the senior VP of community benefit who so happened to be a nun, but had a $100,000,000 budget. I spent the other half of my time in operations. It was there that I realized that, wow, community benefit, community engagement is a part of the business of healthcare. And I knew that that's what I wanted to do. The stars aligned, I got a position at Mayo Clinic.
I tell people all the time it was a one year contract to be a project manager and it's been nineteen years. That's amazing. Guess I've done well. My career at Mayo is unique in that I've spent all of my career really working in the space of health equity and community engagement in a variety of different roles.
Ivy Tillman: Your trajectory is really interesting because it blends both your interest in healthcare with then having that interest and strength in finance. And oftentimes we talk about people's research career trajectory and how you can blend both. I found it interesting when you talked about the business of community engagement because we don't talk about that a lot. Can you speak on that more? Particularly with that budget.
Monica Albertie: Catholic healthcare is really very much rooted in the system that I was in. Their mission and vision was all about the needs of the poor come first. Catholic healthcare is really rooted in that tradition. They really put their money where their mouth is and the budgets to do work, not just community outreach and engagement, but owning HUD housing and owning senior centers and programming to support communities. However, they had to be good stewards of the resources, so really ensuring that these things that they had impactful.
I have been able to take those lessons into my work today. The work that we do is engaging communities and research, but also addressing cancer burden through outreach programs. We are serving a large community, but we also have to be good stewards of the resources. We ensure that we are doing things that have impact. We're strategic, so we have a strategic plan.
But I also would like to say that in addition to the business of community outreach and engagement, there is a science to it. Our team publishes. Most of our leadership team has academic rank. There is a science to this work as well because there is a right way to really engage communities and also be able to show impact.
Ivy Tillman: You have said a lot that I want to unpack for a minute.
Monica Albertie: Okay.
Ivy Tillman: So we'll start with the communities particularly, and then we'll move into the science of community engagement, which I think is a really great place to dive in a little bit deeper. Can you describe the communities that you serve in this community engagement model?
Monica Albertie: Sure. The Mayo Clinic Comprehensive Cancer Center has what we call a catchment area of 75 counties. Mayo Clinic is located in Phoenix, Scottsdale, Arizona, Northeast Florida, so Jacksonville, Florida, and primarily in Rochester, Minnesota, but has a health system that serves rural counties in Wisconsin, Iowa, and Minnesota. Our cancer center seventy five counties, 65 in the Midwest, 9 in Florida, and one in Arizona, Maricopa County, but that has 4,000,000 plus people. The work that we do, our responsibility as a cancer center is to ensure that we are addressing the cancer burden in our backyard, so in that catchment area.
The great work that happens inside of the cancer center, developing treatment and scientific discoveries, all of that great work outreach and our COE, community outreach and engagement, really is the center of that because we are the connector between the community and our cancer center. We ensure that the voices of the community are at the table, that the needs and priorities of the communities are shared with our cancer center members so that the work that they do every day really can align with what the community is asking for. That's the community we serve. It's a diverse community, all different races, ethnicities, socioeconomic status, the outreach that we do, we tailor it based on our communities. It's not a once solution fits all, one outreach program for everybody.
We tailor it based on the communities and the characteristics of the community or the community situation. That's how we approach what I call our COE efforts.
Ivy Tillman: Wow. Amazing. Can you describe some of the projects and activities that you do?
Monica Albertie: One thing that I'll say is that this is where I get back to the science of community outreach and engagement, is that we really have shifted our model from health fairs and general outreach, these one offs that sometimes you'll to really more evidence based practices. Our leadership team led by our Deputy Director, Doctor. Filakio Dedna and our Evaluation Scientist, Doctor. Manisha Salinas, really did research on what are these effective evidence based interventions that have been done by other cancer centers and that have been adopted and uplifted by the National Cancer Institute and other reputable organizations. That is a large part of our work where we roll out these evidence based programs.
For instance, we have a program called Body and Soul that is faith based, but we have adapted it to be a faith based organizations, but also community based organizations. And it's all about nutrition, physical activity, and achieving a healthy lifestyle. It's a six week program, but we tailor it. In Florida, our community looks different than in Maricopa County in Arizona than in some of our rural counties across the Midwest. We tailor it.
But at the end of the day, what we're looking for is this program increasing individuals' knowledge and awareness about what's needed to live a healthy life. Is it changing their behavior? Is it encouraging them to want to make lifestyle changes for the long term? We measure that. All of our work that we do, we look for the impact.
So it's all measured. That's what I mean by the science of COE. Our outreach and engagement efforts are really rooted in science.
Ivy Tillman: You talk about measurement and evaluation. Oftentimes, particularly when, say, if we kind of back it up to a human research program and they're trying or beginning to build on their community engagement efforts, oftentimes where there may be challenges is in how can you measure success? What does success look like and how do you evaluate it. Can you discuss that some?
Monica Albertie: One of the things that we did is a deep dive to really understand our catchment area. We had to understand what were the needs, the priorities, what is the burden? When I say cancer burden, what are the cancers that are impacting these communities? What are the risk factors that we see? For instance, sun exposure is a risk factor that we see across our catchment area.
We want to develop programs that address that. Speaking back to the science, once we understood the needs and the priorities, we worked together to develop a logic model. What are those inputs, those outputs, but what are the outcomes? What do we want to see? If we want to reduce cancer burden, we know that we need to increase knowledge and awareness. We need to impact behavioral intent. When we think about research, we want to increase awareness around research, trust in research, we want to increase trust in us, and so we're able to measure those things in different ways, whether it's surveys, focus groups, it just depends on the program or what we're rolling out. But we have our North Star using our logic model of here the outcomes that we want to see because these outcomes are tied to reducing that burden.
Ivy Tillman: Oh, wow. You mentioned in the context of research, wanting to increase awareness and also trust. Let's start with awareness. What are some of the methods that your group is using to increase awareness just around research?
Monica Albertie: We have a Clinical Trials Champions Program. What that program does is essentially we partner with local organizations to come in and provide an overview of research, debunking the myths around research. I think sometimes the idea of research can be a little bit secretive. It's not dinner conversation. This program really goes in and we talk about some of the atrocities that have happened, but we talk about what are the protections that have come out because of those atrocities.
But then we also uncover, this is what an institutional review board is. This is exactly what they do. We talk through like, here are the different types of people, the different types of roles that serve in research. Here's a research coordinator. This is what they do.
And this is the role of the PI and the role of the data safety monitoring board. We really, I guess, open up the curtains a bit and let people really see, Oh, this is how a clinical trial works. These are the protections that have been put in place. That's how we increase the awareness and we've done this in quite a few organizations across our catchment area with about six-seven hundred community members. We have PIs or principal investigators come and talk, we have research coordinators come and talk, folks to really educate and inform the community about research.
Then at the end of that, we offer the opportunity to participate in a community research registry. Because another part about research participation is not just awareness of what research is, but it's also awareness of studies that are out there.
Ivy Tillman: Absolutely.
Monica Albertie: This research registry that we have allows community members to answer questions, whichever ones they feel most comfortable with, demographics, some health information. We have studies on the other side that if they match, so depending on their answers, they may be matched to a study and they're informed about it. They're not enrolled. I think the other really cool thing about it is that we also ask the participant in the registry, what type of research are you most comfortable with? If you say you only are comfortable with surveys and blood draws, that's all that's going to match to you.
Every year you can update. If you get more comfortable and you're like, I'm interested in donating tissue. Now those studies will match to you. It's awareness about research debunking kind of the myths, but also the awareness about research opportunity.
Ivy Tillman: Yes. And so I know we're recording and and our audience will not see our faces, but I am just smiling because I so appreciate this approach. Oftentimes what we see in communities is a lot of conversation around what is research, but then it's usually attached to a study. To have that opportunity just to learn and become aware. Then based upon their comfort level, if they want to engage further, that allowing the community member to determine their level of engagement with different types of research studies, I'm sure is quite impactful And it probably lends to a longer engagement of that person with research, with understanding research and participating, and even communicating with their family.
Monica Albertie: Right. Because it's we will talk about the registry, but we also talk about the importance of having your voice be heard in the design of research. Registry is an offering that we have, we talk about our other, you open with our community scientist program and we have a community engagement studio model that we have that allows for researchers to connect directly with their target or their intended research audience. Again, it's about awareness and understanding research, understanding and knowing the opportunities that exist, but also knowing the opportunities where you can actually have your voice be a part of the development and dissemination of research.
Ivy Tillman: That is amazing. I'm sure that as we have audience members listening, they're going to want to know more about your program. How much information do you share, say, within research communities or with say other IRBs or human research protection programs?
Monica Albertie: Yes. We definitely share. We have been invited to present at different conferences. Again, lot of the work that we're doing, our leadership is very much adamant about publishing, but our leadership team is happy to come and speak or consult. We actually have an internal consultation, but we also offer external consultation, really more for folks who are interested in some information gathering or opportunities to partner.
We are very much open to sharing and collaborating and also learning about other models that may be out there for engaging communities.
Ivy Tillman: Wonderful. Just wonderful, wonderful work you're doing. We talked about awareness. Let's dig into trust for a minute. You mentioned increasing trust and research.
How are you all doing that or measuring it? What are the outcomes that you're looking to see?
Monica Albertie: What's interesting is that one of the things that we've started to do is that in outreach work, as we meet partners and as we are working with partners, we actually have them complete a partnership profile just so we can know who they are. But we have a trust scale on there. Our evaluation scientists use some validated questions to really measure trust. When we are engaging with partners, want to know how much do you trust us. That's a part of that work because these organizations oftentimes, they are the pathway to community members just because they have the trust of community members.
We do a lot of partnership, but we want to make sure there's trust between Mayo Clinic and those community partners. But then we'll also measure trust of individuals. If there was a presentation about research, there may be a question in the evaluation asking, are you more likely to want to learn more about a research study if it was ever presented to you? We have some different ways that we measure academically. But I think the biggest part of really trying to gain trust is that we try to create these, not try, we do.
We create these programs with community buy in. Really, I think as much as we stress participation as a research participant, we probably stress even more participation as a voice in how research is shaped. You're going to trust something more if you had a hand in it. If I was able to give my opinion, give my input into a study that has not rolled out to community yet or has not rolled out to the public, and that investigator takes my opinions seriously and my comments and they actually changed their protocol. I am more apt to say, if you fit the criteria for this study, you should join because I'm telling you that this investigator really listened really modified their study based on the feedback of community.
That's the other thing. While we really want to increase participation in research, we want to increase participation in the design of research. You don't have to have a fancy degree, you don't have to have that, you really just have to have a lived experience to be able to provide guidance to an investigator. That's really the work that we're doing around trust, is how do we get more community members to really be a part of the process that ultimately will hopefully make them more comfortable when it's time for them to consider joining a research study as a participant.
Ivy Tillman: Absolutely. It builds those relationships with the researchers too and the scientists involved in the studies. Wonderful model. You mentioned voices at the table and making sure that their voices are heard. What have you all learned from the community?
Monica Albertie: Yes. So many great things. I will say that community members have always been so shocked and grateful that, oh, wow, an investigator, researcher is willing to listen to me, give them feedback and that they actually take the feedback. That's overall something we've learned. Some things that we've seen that our community members have really helped is we think about, I think sometimes in science, we become the experts in our particular field.
We know all the fancy words. We know what I call the words that have letters and numbers at them. We live that and that's what we speak every day. But that creates a barrier with most people who might not have devoted their life and career to that particular subject, and so there is a communication barrier. That has come up, I would say the most in all of our activities to have community guide investigators or guide research is about is language.
How we explain things, can we make it plain? Can you explain this? Again, it's can you explain it in a way that just makes it easy for me to understand what I'm about to get into? We've seen that overwhelmingly. We've heard from community members about representation in recruitment materials.
If I can see myself in a recruitment material, maybe that signals something that, oh, this study is for me or I do have an opportunity to participate. That's been maybe the second biggest thing we've heard. I think the third has really been about how can researchers improve or build upon their engagement with community long term? Is the researcher willing to come out and talk about their science? Are they willing to take some time to invite communities into their labs?
Some of our work is that we facilitate some of those things. But those are the things that we have learned from community that has really shaped, I think that increase in trust in research, but also the increased interest in participating as well.
Ivy Tillman: Wow. When we consider that and trust and awareness, the Community Scientist Program is fascinating to us. Can you describe it?
Monica Albertie: Yeah. Our Community Scientist Program is a training program where we have didactic, so classroom training for eight weeks and then experiential training where we match community scientists with the investigator at the clinic. The program is open to anyone, particularly that lives in our Casperin area, but the educational, so a high school diploma or a GED, that's it. The eight week course really does, I think, a great overview of different parts of research. We'll talk about bioethics and research ethics.
We talk about ethics, We talk about the role of the IRB. We talk about bio banking, sample collection, sample storage. We talk about AI, so the role of technology in Absolutely. We also have different PIs come and talk about maybe a little bit of their work as it relates to maybe different parts of cancer. We may talk about how a cancer treatment is developed or maybe any kind of treatment is developed.
It's eight weeks, it's a virtual course, we do that because we have it open to our 75 County Cashman area. Then there is application process and we ask when someone applies, what are you interested in? Are there particular cancers or diseases that you may have a lived experience with or that have a particular connection with? Because that helps us when we go to try to do the match with a Mayo Clinic investigator. After eight weeks of training, then our team works to match the community scientists with an investigator.
During that six week experiential, the investigator may invite the community scientists to their lab, come and sit in on our study meetings. They may show them some of their materials. After the experiential training, if all goes well, we do a permanent match for a year. In that year, the community scientist is integrated into the team. Because of just our internal processes, the community scientists will take the human subjects protection.
Now they can actually be able to be on the IRB application, and so they're actually able to look at the materials. They aren't doing any study conduct, so we're very clear about that. The community scientist provides guidance there at the level of the PI. They provide guidance, advice, input, but they're not going to do the study for you. You still have study coordinators and staff for that.
We pay our community scientists a nominal amount for training and then they're paid for their time for that year. Seen investigators really love this concept because they have a community scientist that has a completely different perspective. Because maybe that scientist may not have the formal background in a particular disease where they have that lived experience. If a study is designed in a certain way, you need to come to the clinic six times a week to do X, Y, and Z. Someone with a lived experience may say that may be a barrier, you should change it.
Our community scientists are empowered to give their input because they're really shaping not just a study because we match them with investigators. Studies because the idea is that you grow a relationship with your community scientists to really shape how you do research, period.
Ivy Tillman: Once again, building that trusting relationship with the researcher, which I think is essential to this model.
Monica Albertie: We've seen positive results. Really, again, our leadership, Doctor. Odetna has a community scientist that she actually came to Mayo Clinic with. She's had this relationship for ten years with this particular community scientist. I think about the elevation.
It's not just the community scientists sitting and just giving advice in a lab somewhere, but her community scientist is a NPI on federal grants. The community scientist has served on national committees providing input to a number of people because of his role in her program. It's more than just one study. It really is developing a relationship and it's mutually beneficial. Think that's the beauty of that program is that it's about developing long term permanent relationships and community.
The community scientists also exposes our investigators to their community and to their partners and invites them to come and talk about their science and whatever those community venues are. It really is a win win for both the community and the investigator.
Ivy Tillman: Absolutely. Here at PRIMR, something we've been beginning to discuss and explore is building communities of trust or communities of practice, right? And so this is a great example of that, in particular around that relationship that's developed and that year long kind of process with the community scientist and the researcher. Now I can imagine that getting these type of programs up and running an institution require partnership with other offices outside of yours. So can you describe some of those partnerships and some of the ways that you've had to work with different offices to make sure that this program happens?
Monica Albertie: Absolutely. This one required lots of partnership because essentially the community scientists are not employees of the clinic. We had to work with a particular office within Mayo that has a process for contractors and folks who aren't employees but need access to Mayo. We had to work very closely with them to actually build out a category just for community scientists because these scientists need, so they all have Mayo email addresses because that's how we communicate with them. That means that when they're on campus, they need access.
We have to work with IT because they're going to need a little bit of access. We also had to work with the IRB to ensure that they knew that this was coming and that we understood that because of the nature of what a community scientist would do, what are all of the trainings that are needed? What are the modules that need to be taken so that they can be able to see a protocol, see a consent form that they understand. Several offices took a year or so to really build this. Even with our training program, working with our ethics colleagues to know what's the right information that we share, working with our bio banking colleagues.
Lots of collaborators across Mayo Clinic to really make this happen. It's been what I call a labor of love. We've been able to really navigate internal and external barriers because some of this is also about the training or providing information for our community scientists. Now they have access to Mayo, so what do you do with it? How do I access?
There's a bit of training on that for our scientists as well to ensure that they are able to access the appropriate trainings and check their Mayo email. When they come on campus, we have to have a special badge for them to actually get through. Of moving parts to make the program happen and we've done it. The great thing is that we have trained 60 community scientists and have matched 40 of Sometimes the match can be as that takes a little bit longer just depending on the need on both sides. There could be an interest by a scientist and we need to find an investigator that may align, we match everyone at some point.
Very successful, lots of collaboration. I think it's a program that has gained a lot of attention internally at Mayo. We are now starting to have investigators come and say, Hey, I'd like a community scientist. Where at the beginning, we were going to investigators and let me tell you about this Now we have our scientists saying, I heard about this community scientist. Think I want one.
Or can I be a preceptor for the experience so I can see what it would be like to have a community scientist in my lab?
Ivy Tillman: That is really special. Also another model for other institutions. So my final question really relates to that. And considering all that we've talked about, there are many institutions who are listening to this podcast or may access it, who are now going to ask the question like, how do I get started? Where do I start?
How do I start? What advice would you give institutions or researchers looking to develop a community engagement model like you have or even the community scientist program?
Monica Albertie: I guess I have an interesting answer that I don't think it's controversial, but we didn't really start with the research. It's a community engaged research model, but we laid a lot of foundation meeting communities where they are, doing mobile food giveaways, standing up outreach programs at senior centers, answering the call of our local federally qualified health centers if they have a need and we try to figure out how do we partner to meet that need. We laid a lot of groundwork before we were even ready to launch, particularly some of our community engaged research models. That's my advice is that you start with a community first and also remembering it's mutually beneficial. I think sometimes as large institutions, as researchers, maybe we aren't always used to a pushback or getting a no.
But really hearing from community when they tell you that idea won't work here, but I'll partner with you to think through other ideas. I think not starting with research, I don't think that that's the way to go, is really starting with community and engaging the community to address their needs. That may mean that your, for instance, diabetes study that you really are wanting to recruit to is pivotal. I just want to go out and recruit to that study. But people may not have a necessary interest in that study. But if you know that the community is saying, the study sounds great, but right now what we're dealing with is that we're living in food insecure areas, can we work on that? Yes. That is how you begin gaining trust. That would be my advice is really starting with community first, hearing the needs, being completely flexible with pivoting. We have had a number of programs that we thought were genius and community members have been like, no.
We pivoted and we say, Okay, can we work together That groundwork has allowed us to do things like a community scientist and community members are lining up, filling out applications to be a part of that program because they know and they see the evidence that Mayo Clinic has really addressed their needs that they have come to us with. We've built that trust on the front end before we even said the word research. Doctor. Research.
Ivy Tillman: Wow. Monica, is there anything that we did not discuss that you want to emphasize or let our audience know about the program that you all have at Mayo Clinic.
Monica Albertie: I think for us, the model that we have for community outreach and engagement, I think is a great one. We have our outreach and the work that we do to really improve that bi directional engagement with investigators is what we call our in reach. Our work where we reach into the clinic to ensure that voices are at the table and to ensure that investigators understand community needs and priorities really marries well with our outreach. Our outreach is collecting that information, we're addressing that burden, we're hearing those needs and priorities and what the community really wants. We have done some research visioning exercises with community members, particularly our community advisory board where they have told us, this is what we want you to study.
We're taking that work when our outreach teams are out in community and bringing it back inside of the clinic and making sure that our scientists are armed with that knowledge. As they're thinking about that next big idea or they're getting ready to write that next big grant, They have community in mind because that then really ensures that you've listened to community. This project or this thing that you're getting ready to write this grant for probably has a much better chance of getting participation and getting buy in from community. Absolutely. Because you wrote it and pulled it together based on the needs and priorities and the voice of the communities again upfront.
I think that that's just something that has been a model that has worked very well for us is really connecting our outreach with our in reach work for this full model, making sure our internal folks understand what's happening out in community.
Ivy Tillman: Absolutely. Wonderful model. Wonderful model. Monica, thank you for your time today just sharing with us about your program and a lot of the insights that you've given. I'm sure others will be able to use, and we thank you for joining us on the podcast. Thank you.
Monica Albertie: Excellent. Thank you so much for having me. This has been a wonderful experience.
Welcome back to Research Ethics Reimagine. Today, we're thrilled to be joined by Monica Albertie. Monica is the Director of Research Operations for Community Outreach and Engagement at the Mayo Clinic Comprehensive Cancer Center. She provides operational leadership for cancer focused community outreach and community engaged research aimed at reducing the cancer burden. In addition to her leadership role, Monica also serves as an assistant professor of healthcare administration at the Mayo Clinic College of Medicine and Science.
Today we're going to explore community engaged research, which is essential in addressing health equity. It's really important in cancer care as well. By actively involving communities in the research process, researchers can better identify and address barriers to care and disparities that impact community well-being. This inclusive approach is important because it fosters trust, enhances the relevance of research, and ultimately improves health outcomes. Additionally, Mayo Clinic's program has scientist program incorporated into their community engagement model.
This program is designed to train community health advocates and healthcare workers as community research advocates. These community scientists are prepared to participate as active members of community engaged research teams in partnership with academic scientists. Monica, welcome to the podcast. It is great to see you again and thank you so much for being here with us today.
Monica Albertie: Thank you so much for having me. I'm excited to chat with you today.
Ivy Tillman: Absolutely. We'll get started. First, can you just share a little bit about yourself and take a moment to explain how your career has taken you to where you are here at the Mayo Clinic?
Monica Albertie: Sure. I was born and raised in Houston, Texas and I spent most of my adult life in Florida. I knew I've always wanted to work in healthcare. Initially, was as a provider. I knew I wanted to be a family medicine physician or OBGYN.
That was the path that I was going to take or that I started. Went to Florida A and M University and originally majored in biology pre med, but took some business classes and realized that, Oh, I like finance and operations. I was actually introduced to healthcare management by an advisor at Florida A and M. I have a pretty traditional health administration background. I did my Masters of Health Administration at University of Florida and I did administrative fellowship.
This was pivotal for me in terms of my career because it was in that administrative fellowship, was in a Catholic healthcare system that I spent half of my time in community benefit working under the senior VP of community benefit who so happened to be a nun, but had a $100,000,000 budget. I spent the other half of my time in operations. It was there that I realized that, wow, community benefit, community engagement is a part of the business of healthcare. And I knew that that's what I wanted to do. The stars aligned, I got a position at Mayo Clinic.
I tell people all the time it was a one year contract to be a project manager and it's been nineteen years. That's amazing. Guess I've done well. My career at Mayo is unique in that I've spent all of my career really working in the space of health equity and community engagement in a variety of different roles.
Ivy Tillman: Your trajectory is really interesting because it blends both your interest in healthcare with then having that interest and strength in finance. And oftentimes we talk about people's research career trajectory and how you can blend both. I found it interesting when you talked about the business of community engagement because we don't talk about that a lot. Can you speak on that more? Particularly with that budget.
Monica Albertie: Catholic healthcare is really very much rooted in the system that I was in. Their mission and vision was all about the needs of the poor come first. Catholic healthcare is really rooted in that tradition. They really put their money where their mouth is and the budgets to do work, not just community outreach and engagement, but owning HUD housing and owning senior centers and programming to support communities. However, they had to be good stewards of the resources, so really ensuring that these things that they had impactful.
I have been able to take those lessons into my work today. The work that we do is engaging communities and research, but also addressing cancer burden through outreach programs. We are serving a large community, but we also have to be good stewards of the resources. We ensure that we are doing things that have impact. We're strategic, so we have a strategic plan.
But I also would like to say that in addition to the business of community outreach and engagement, there is a science to it. Our team publishes. Most of our leadership team has academic rank. There is a science to this work as well because there is a right way to really engage communities and also be able to show impact.
Ivy Tillman: You have said a lot that I want to unpack for a minute.
Monica Albertie: Okay.
Ivy Tillman: So we'll start with the communities particularly, and then we'll move into the science of community engagement, which I think is a really great place to dive in a little bit deeper. Can you describe the communities that you serve in this community engagement model?
Monica Albertie: Sure. The Mayo Clinic Comprehensive Cancer Center has what we call a catchment area of 75 counties. Mayo Clinic is located in Phoenix, Scottsdale, Arizona, Northeast Florida, so Jacksonville, Florida, and primarily in Rochester, Minnesota, but has a health system that serves rural counties in Wisconsin, Iowa, and Minnesota. Our cancer center seventy five counties, 65 in the Midwest, 9 in Florida, and one in Arizona, Maricopa County, but that has 4,000,000 plus people. The work that we do, our responsibility as a cancer center is to ensure that we are addressing the cancer burden in our backyard, so in that catchment area.
The great work that happens inside of the cancer center, developing treatment and scientific discoveries, all of that great work outreach and our COE, community outreach and engagement, really is the center of that because we are the connector between the community and our cancer center. We ensure that the voices of the community are at the table, that the needs and priorities of the communities are shared with our cancer center members so that the work that they do every day really can align with what the community is asking for. That's the community we serve. It's a diverse community, all different races, ethnicities, socioeconomic status, the outreach that we do, we tailor it based on our communities. It's not a once solution fits all, one outreach program for everybody.
We tailor it based on the communities and the characteristics of the community or the community situation. That's how we approach what I call our COE efforts.
Ivy Tillman: Wow. Amazing. Can you describe some of the projects and activities that you do?
Monica Albertie: One thing that I'll say is that this is where I get back to the science of community outreach and engagement, is that we really have shifted our model from health fairs and general outreach, these one offs that sometimes you'll to really more evidence based practices. Our leadership team led by our Deputy Director, Doctor. Filakio Dedna and our Evaluation Scientist, Doctor. Manisha Salinas, really did research on what are these effective evidence based interventions that have been done by other cancer centers and that have been adopted and uplifted by the National Cancer Institute and other reputable organizations. That is a large part of our work where we roll out these evidence based programs.
For instance, we have a program called Body and Soul that is faith based, but we have adapted it to be a faith based organizations, but also community based organizations. And it's all about nutrition, physical activity, and achieving a healthy lifestyle. It's a six week program, but we tailor it. In Florida, our community looks different than in Maricopa County in Arizona than in some of our rural counties across the Midwest. We tailor it.
But at the end of the day, what we're looking for is this program increasing individuals' knowledge and awareness about what's needed to live a healthy life. Is it changing their behavior? Is it encouraging them to want to make lifestyle changes for the long term? We measure that. All of our work that we do, we look for the impact.
So it's all measured. That's what I mean by the science of COE. Our outreach and engagement efforts are really rooted in science.
Ivy Tillman: You talk about measurement and evaluation. Oftentimes, particularly when, say, if we kind of back it up to a human research program and they're trying or beginning to build on their community engagement efforts, oftentimes where there may be challenges is in how can you measure success? What does success look like and how do you evaluate it. Can you discuss that some?
Monica Albertie: One of the things that we did is a deep dive to really understand our catchment area. We had to understand what were the needs, the priorities, what is the burden? When I say cancer burden, what are the cancers that are impacting these communities? What are the risk factors that we see? For instance, sun exposure is a risk factor that we see across our catchment area.
We want to develop programs that address that. Speaking back to the science, once we understood the needs and the priorities, we worked together to develop a logic model. What are those inputs, those outputs, but what are the outcomes? What do we want to see? If we want to reduce cancer burden, we know that we need to increase knowledge and awareness. We need to impact behavioral intent. When we think about research, we want to increase awareness around research, trust in research, we want to increase trust in us, and so we're able to measure those things in different ways, whether it's surveys, focus groups, it just depends on the program or what we're rolling out. But we have our North Star using our logic model of here the outcomes that we want to see because these outcomes are tied to reducing that burden.
Ivy Tillman: Oh, wow. You mentioned in the context of research, wanting to increase awareness and also trust. Let's start with awareness. What are some of the methods that your group is using to increase awareness just around research?
Monica Albertie: We have a Clinical Trials Champions Program. What that program does is essentially we partner with local organizations to come in and provide an overview of research, debunking the myths around research. I think sometimes the idea of research can be a little bit secretive. It's not dinner conversation. This program really goes in and we talk about some of the atrocities that have happened, but we talk about what are the protections that have come out because of those atrocities.
But then we also uncover, this is what an institutional review board is. This is exactly what they do. We talk through like, here are the different types of people, the different types of roles that serve in research. Here's a research coordinator. This is what they do.
And this is the role of the PI and the role of the data safety monitoring board. We really, I guess, open up the curtains a bit and let people really see, Oh, this is how a clinical trial works. These are the protections that have been put in place. That's how we increase the awareness and we've done this in quite a few organizations across our catchment area with about six-seven hundred community members. We have PIs or principal investigators come and talk, we have research coordinators come and talk, folks to really educate and inform the community about research.
Then at the end of that, we offer the opportunity to participate in a community research registry. Because another part about research participation is not just awareness of what research is, but it's also awareness of studies that are out there.
Ivy Tillman: Absolutely.
Monica Albertie: This research registry that we have allows community members to answer questions, whichever ones they feel most comfortable with, demographics, some health information. We have studies on the other side that if they match, so depending on their answers, they may be matched to a study and they're informed about it. They're not enrolled. I think the other really cool thing about it is that we also ask the participant in the registry, what type of research are you most comfortable with? If you say you only are comfortable with surveys and blood draws, that's all that's going to match to you.
Every year you can update. If you get more comfortable and you're like, I'm interested in donating tissue. Now those studies will match to you. It's awareness about research debunking kind of the myths, but also the awareness about research opportunity.
Ivy Tillman: Yes. And so I know we're recording and and our audience will not see our faces, but I am just smiling because I so appreciate this approach. Oftentimes what we see in communities is a lot of conversation around what is research, but then it's usually attached to a study. To have that opportunity just to learn and become aware. Then based upon their comfort level, if they want to engage further, that allowing the community member to determine their level of engagement with different types of research studies, I'm sure is quite impactful And it probably lends to a longer engagement of that person with research, with understanding research and participating, and even communicating with their family.
Monica Albertie: Right. Because it's we will talk about the registry, but we also talk about the importance of having your voice be heard in the design of research. Registry is an offering that we have, we talk about our other, you open with our community scientist program and we have a community engagement studio model that we have that allows for researchers to connect directly with their target or their intended research audience. Again, it's about awareness and understanding research, understanding and knowing the opportunities that exist, but also knowing the opportunities where you can actually have your voice be a part of the development and dissemination of research.
Ivy Tillman: That is amazing. I'm sure that as we have audience members listening, they're going to want to know more about your program. How much information do you share, say, within research communities or with say other IRBs or human research protection programs?
Monica Albertie: Yes. We definitely share. We have been invited to present at different conferences. Again, lot of the work that we're doing, our leadership is very much adamant about publishing, but our leadership team is happy to come and speak or consult. We actually have an internal consultation, but we also offer external consultation, really more for folks who are interested in some information gathering or opportunities to partner.
We are very much open to sharing and collaborating and also learning about other models that may be out there for engaging communities.
Ivy Tillman: Wonderful. Just wonderful, wonderful work you're doing. We talked about awareness. Let's dig into trust for a minute. You mentioned increasing trust and research.
How are you all doing that or measuring it? What are the outcomes that you're looking to see?
Monica Albertie: What's interesting is that one of the things that we've started to do is that in outreach work, as we meet partners and as we are working with partners, we actually have them complete a partnership profile just so we can know who they are. But we have a trust scale on there. Our evaluation scientists use some validated questions to really measure trust. When we are engaging with partners, want to know how much do you trust us. That's a part of that work because these organizations oftentimes, they are the pathway to community members just because they have the trust of community members.
We do a lot of partnership, but we want to make sure there's trust between Mayo Clinic and those community partners. But then we'll also measure trust of individuals. If there was a presentation about research, there may be a question in the evaluation asking, are you more likely to want to learn more about a research study if it was ever presented to you? We have some different ways that we measure academically. But I think the biggest part of really trying to gain trust is that we try to create these, not try, we do.
We create these programs with community buy in. Really, I think as much as we stress participation as a research participant, we probably stress even more participation as a voice in how research is shaped. You're going to trust something more if you had a hand in it. If I was able to give my opinion, give my input into a study that has not rolled out to community yet or has not rolled out to the public, and that investigator takes my opinions seriously and my comments and they actually changed their protocol. I am more apt to say, if you fit the criteria for this study, you should join because I'm telling you that this investigator really listened really modified their study based on the feedback of community.
That's the other thing. While we really want to increase participation in research, we want to increase participation in the design of research. You don't have to have a fancy degree, you don't have to have that, you really just have to have a lived experience to be able to provide guidance to an investigator. That's really the work that we're doing around trust, is how do we get more community members to really be a part of the process that ultimately will hopefully make them more comfortable when it's time for them to consider joining a research study as a participant.
Ivy Tillman: Absolutely. It builds those relationships with the researchers too and the scientists involved in the studies. Wonderful model. You mentioned voices at the table and making sure that their voices are heard. What have you all learned from the community?
Monica Albertie: Yes. So many great things. I will say that community members have always been so shocked and grateful that, oh, wow, an investigator, researcher is willing to listen to me, give them feedback and that they actually take the feedback. That's overall something we've learned. Some things that we've seen that our community members have really helped is we think about, I think sometimes in science, we become the experts in our particular field.
We know all the fancy words. We know what I call the words that have letters and numbers at them. We live that and that's what we speak every day. But that creates a barrier with most people who might not have devoted their life and career to that particular subject, and so there is a communication barrier. That has come up, I would say the most in all of our activities to have community guide investigators or guide research is about is language.
How we explain things, can we make it plain? Can you explain this? Again, it's can you explain it in a way that just makes it easy for me to understand what I'm about to get into? We've seen that overwhelmingly. We've heard from community members about representation in recruitment materials.
If I can see myself in a recruitment material, maybe that signals something that, oh, this study is for me or I do have an opportunity to participate. That's been maybe the second biggest thing we've heard. I think the third has really been about how can researchers improve or build upon their engagement with community long term? Is the researcher willing to come out and talk about their science? Are they willing to take some time to invite communities into their labs?
Some of our work is that we facilitate some of those things. But those are the things that we have learned from community that has really shaped, I think that increase in trust in research, but also the increased interest in participating as well.
Ivy Tillman: Wow. When we consider that and trust and awareness, the Community Scientist Program is fascinating to us. Can you describe it?
Monica Albertie: Yeah. Our Community Scientist Program is a training program where we have didactic, so classroom training for eight weeks and then experiential training where we match community scientists with the investigator at the clinic. The program is open to anyone, particularly that lives in our Casperin area, but the educational, so a high school diploma or a GED, that's it. The eight week course really does, I think, a great overview of different parts of research. We'll talk about bioethics and research ethics.
We talk about ethics, We talk about the role of the IRB. We talk about bio banking, sample collection, sample storage. We talk about AI, so the role of technology in Absolutely. We also have different PIs come and talk about maybe a little bit of their work as it relates to maybe different parts of cancer. We may talk about how a cancer treatment is developed or maybe any kind of treatment is developed.
It's eight weeks, it's a virtual course, we do that because we have it open to our 75 County Cashman area. Then there is application process and we ask when someone applies, what are you interested in? Are there particular cancers or diseases that you may have a lived experience with or that have a particular connection with? Because that helps us when we go to try to do the match with a Mayo Clinic investigator. After eight weeks of training, then our team works to match the community scientists with an investigator.
During that six week experiential, the investigator may invite the community scientists to their lab, come and sit in on our study meetings. They may show them some of their materials. After the experiential training, if all goes well, we do a permanent match for a year. In that year, the community scientist is integrated into the team. Because of just our internal processes, the community scientists will take the human subjects protection.
Now they can actually be able to be on the IRB application, and so they're actually able to look at the materials. They aren't doing any study conduct, so we're very clear about that. The community scientist provides guidance there at the level of the PI. They provide guidance, advice, input, but they're not going to do the study for you. You still have study coordinators and staff for that.
We pay our community scientists a nominal amount for training and then they're paid for their time for that year. Seen investigators really love this concept because they have a community scientist that has a completely different perspective. Because maybe that scientist may not have the formal background in a particular disease where they have that lived experience. If a study is designed in a certain way, you need to come to the clinic six times a week to do X, Y, and Z. Someone with a lived experience may say that may be a barrier, you should change it.
Our community scientists are empowered to give their input because they're really shaping not just a study because we match them with investigators. Studies because the idea is that you grow a relationship with your community scientists to really shape how you do research, period.
Ivy Tillman: Once again, building that trusting relationship with the researcher, which I think is essential to this model.
Monica Albertie: We've seen positive results. Really, again, our leadership, Doctor. Odetna has a community scientist that she actually came to Mayo Clinic with. She's had this relationship for ten years with this particular community scientist. I think about the elevation.
It's not just the community scientists sitting and just giving advice in a lab somewhere, but her community scientist is a NPI on federal grants. The community scientist has served on national committees providing input to a number of people because of his role in her program. It's more than just one study. It really is developing a relationship and it's mutually beneficial. Think that's the beauty of that program is that it's about developing long term permanent relationships and community.
The community scientists also exposes our investigators to their community and to their partners and invites them to come and talk about their science and whatever those community venues are. It really is a win win for both the community and the investigator.
Ivy Tillman: Absolutely. Here at PRIMR, something we've been beginning to discuss and explore is building communities of trust or communities of practice, right? And so this is a great example of that, in particular around that relationship that's developed and that year long kind of process with the community scientist and the researcher. Now I can imagine that getting these type of programs up and running an institution require partnership with other offices outside of yours. So can you describe some of those partnerships and some of the ways that you've had to work with different offices to make sure that this program happens?
Monica Albertie: Absolutely. This one required lots of partnership because essentially the community scientists are not employees of the clinic. We had to work with a particular office within Mayo that has a process for contractors and folks who aren't employees but need access to Mayo. We had to work very closely with them to actually build out a category just for community scientists because these scientists need, so they all have Mayo email addresses because that's how we communicate with them. That means that when they're on campus, they need access.
We have to work with IT because they're going to need a little bit of access. We also had to work with the IRB to ensure that they knew that this was coming and that we understood that because of the nature of what a community scientist would do, what are all of the trainings that are needed? What are the modules that need to be taken so that they can be able to see a protocol, see a consent form that they understand. Several offices took a year or so to really build this. Even with our training program, working with our ethics colleagues to know what's the right information that we share, working with our bio banking colleagues.
Lots of collaborators across Mayo Clinic to really make this happen. It's been what I call a labor of love. We've been able to really navigate internal and external barriers because some of this is also about the training or providing information for our community scientists. Now they have access to Mayo, so what do you do with it? How do I access?
There's a bit of training on that for our scientists as well to ensure that they are able to access the appropriate trainings and check their Mayo email. When they come on campus, we have to have a special badge for them to actually get through. Of moving parts to make the program happen and we've done it. The great thing is that we have trained 60 community scientists and have matched 40 of Sometimes the match can be as that takes a little bit longer just depending on the need on both sides. There could be an interest by a scientist and we need to find an investigator that may align, we match everyone at some point.
Very successful, lots of collaboration. I think it's a program that has gained a lot of attention internally at Mayo. We are now starting to have investigators come and say, Hey, I'd like a community scientist. Where at the beginning, we were going to investigators and let me tell you about this Now we have our scientists saying, I heard about this community scientist. Think I want one.
Or can I be a preceptor for the experience so I can see what it would be like to have a community scientist in my lab?
Ivy Tillman: That is really special. Also another model for other institutions. So my final question really relates to that. And considering all that we've talked about, there are many institutions who are listening to this podcast or may access it, who are now going to ask the question like, how do I get started? Where do I start?
How do I start? What advice would you give institutions or researchers looking to develop a community engagement model like you have or even the community scientist program?
Monica Albertie: I guess I have an interesting answer that I don't think it's controversial, but we didn't really start with the research. It's a community engaged research model, but we laid a lot of foundation meeting communities where they are, doing mobile food giveaways, standing up outreach programs at senior centers, answering the call of our local federally qualified health centers if they have a need and we try to figure out how do we partner to meet that need. We laid a lot of groundwork before we were even ready to launch, particularly some of our community engaged research models. That's my advice is that you start with a community first and also remembering it's mutually beneficial. I think sometimes as large institutions, as researchers, maybe we aren't always used to a pushback or getting a no.
But really hearing from community when they tell you that idea won't work here, but I'll partner with you to think through other ideas. I think not starting with research, I don't think that that's the way to go, is really starting with community and engaging the community to address their needs. That may mean that your, for instance, diabetes study that you really are wanting to recruit to is pivotal. I just want to go out and recruit to that study. But people may not have a necessary interest in that study. But if you know that the community is saying, the study sounds great, but right now what we're dealing with is that we're living in food insecure areas, can we work on that? Yes. That is how you begin gaining trust. That would be my advice is really starting with community first, hearing the needs, being completely flexible with pivoting. We have had a number of programs that we thought were genius and community members have been like, no.
We pivoted and we say, Okay, can we work together That groundwork has allowed us to do things like a community scientist and community members are lining up, filling out applications to be a part of that program because they know and they see the evidence that Mayo Clinic has really addressed their needs that they have come to us with. We've built that trust on the front end before we even said the word research. Doctor. Research.
Ivy Tillman: Wow. Monica, is there anything that we did not discuss that you want to emphasize or let our audience know about the program that you all have at Mayo Clinic.
Monica Albertie: I think for us, the model that we have for community outreach and engagement, I think is a great one. We have our outreach and the work that we do to really improve that bi directional engagement with investigators is what we call our in reach. Our work where we reach into the clinic to ensure that voices are at the table and to ensure that investigators understand community needs and priorities really marries well with our outreach. Our outreach is collecting that information, we're addressing that burden, we're hearing those needs and priorities and what the community really wants. We have done some research visioning exercises with community members, particularly our community advisory board where they have told us, this is what we want you to study.
We're taking that work when our outreach teams are out in community and bringing it back inside of the clinic and making sure that our scientists are armed with that knowledge. As they're thinking about that next big idea or they're getting ready to write that next big grant, They have community in mind because that then really ensures that you've listened to community. This project or this thing that you're getting ready to write this grant for probably has a much better chance of getting participation and getting buy in from community. Absolutely. Because you wrote it and pulled it together based on the needs and priorities and the voice of the communities again upfront.
I think that that's just something that has been a model that has worked very well for us is really connecting our outreach with our in reach work for this full model, making sure our internal folks understand what's happening out in community.
Ivy Tillman: Absolutely. Wonderful model. Wonderful model. Monica, thank you for your time today just sharing with us about your program and a lot of the insights that you've given. I'm sure others will be able to use, and we thank you for joining us on the podcast. Thank you.
Monica Albertie: Excellent. Thank you so much for having me. This has been a wonderful experience.
Research Ethics Reimagined guests are esteemed members of our community who generously share their insights. Their views are their own and do not necessarily reflect those of PRIM&R or its staff.