Dr. Nichole Nidey. assistant professor in the University of Iowa Department of Epidemiology, joins Lauren to talk about the Empower Project; a collaborative effort that aims to improve research and clinical care related to substance use during pregnancy.

The views and opinions expressed in this podcast are solely those of the student hosts, guests, and contributors, and do not necessarily reflect the views or opinions of the University of Iowa or the College of Public Health.

Lauren Lavin:

Hello, everybody. Welcome back to Plugged in to Public Health. Today we’re diving into an incredible conversation about community-engaged research, language, and stigma in healthcare, particularly for individuals who use substances during pregnancy. Our guest is Dr. Nichole Nidey, an assistant professor in the Department of Epidemiology at the University of Iowa College of Public Health. She’s the founder of the Empower Project, a collaborative of researchers, healthcare professionals, and most importantly mothers with lived experience, all working to improve care and outcomes for people who use drugs during pregnancy. I’m Lauren Lavin. If it’s your first time with us, welcome. We’re a student-run podcast that explores major issues in public health and how they impact everyone. Not just practitioners, but entire communities. Today’s episode offers valuable takeaways for researchers, clinicians, and future public health leaders alike, including how to engage populations excluded from research, what patient-centered care really means, and why the language we use in health settings truly matters. Now, let’s get plugged in to public health.

Plugged in to Public Health is produced and edited by the students of the University of Iowa College of Public Health. The views and opinions expressed in this podcast are solely those of the student hosts, guests, and contributors, and do not necessarily reflect the views or opinions of the University of Iowa or the College of Public Health.

Well, thank you, everyone, for joining us today. Today we have Dr. Nichole Nidey joining us on the podcast with her project. Well, I don’t know how you’d want to describe the Empower Project, so I’m going to let you do that. I’m going to let you introduce yourself, Dr. Nidey, and what we’re talking about today, the Empower Project.

Nichole Nidey:

Sure. Thank you for having me, Lauren. Yeah, the Empower Project, I would say is a collaborative of folks who care a lot about people who use drugs during pregnancy. It started in 2019 when I was a post-doc. It includes researchers like myself. Healthcare professionals, so it could be nurses, physicians, some community members from different community organizations. And then most importantly, individuals who have lived expertise of drug use during pregnancy.

When we started in 2019, we started with six individuals from just the Ohio region. But now, we have over 20 moms from over eight states that are represented in the Empower Project. Really, our mission is to improve the way that research and clinical care is done related to substance use in pregnancy. The moms have iterated the mission statement over the years, but where we’re at right now is really improving access to care, options during pregnancy, and experiences of those who use drugs during pregnancy when they interact with the healthcare system.

Lauren Lavin:

Yeah. It’s a group of moms and research and provider professionals?

Nichole Nidey:

Yeah.

Lauren Lavin:

Love it. Then they work together. What does the work process look like? Are these monthly meetings? Is it a forum?

Nichole Nidey:

Yeah. It actually changes each year because we have been growing so much. Right now, we have what’s called the Collaborative Core. This is a smaller group of moms who are really into research and have a little bit more time than the others. We meet actually twice a month. Where it’s just myself and about five of these moms, where we’re working on very specific research projects. It depends on what stage we’re in. It could be generating the ideas for the research project, developing survey tools, analyzing data, and that sort of thing.

Then we have a larger group, it’s called the Advisory Circle. This is where we have additional moms who don’t have as much time to do some of the research, but still want to be involved. And healthcare professionals and community members, where they join in in that aspect.

It depends on which meeting structure we’re in for our workflow. I can tell you a little bit about a cool project that we’ve been working on this year to demonstrate-

Lauren Lavin:

Yeah, that’d be great.

Nichole Nidey:

… the things that we do. Last year, we finished a grant that we had from PCORI, which was called a capacity building award. We had funding to develop and then deliver an eight-month training curriculum to people with lived experience of drug use on how to be researchers themselves. We had I think it was 17 out of the 20 moms completed this eight-month series. At the end of it then, we started to chat about now that you have a better idea of what a good research question looks like and what the steps are with the scientific method, and things like that, what are important things we should think about?

One of the moms, her name’s Ariel, she’s fantastic. She said, “I’ve always been interested in language. Something that I’ve been trying to figure out now that I’ve learned about how research is done, how people decided what the replacement words should be for stigmatizing language.” For example, if you look up appropriate language to use related to substance use, you’ll get a lot of different charts, a lot of different things called Words Matter and stuff like that. It will say, “Don’t say substance abuse, say substance misuse.” A lot of that person-first language.

Ariel had said, “I really love the idea of having better language, this is really important, but I don’t really love all the replacement words. Where did these come from? Where’s the citation?” Because they learned about following the citation and the evidence. I said, “That’s a really great idea, I have no idea. Actually, I’ve never thought about it. I just assumed that there was some research behind it.” I did some digging and I couldn’t really figure out where the replacement words came from. We decided to do a research study about what words people prefer among a group of study participants that use drugs during pregnancy. This is a good example of the process in Empower.

We thought of this idea. We wanted to know what language people preferred. Then we spent a lot of time identifying who do we want to hear from, who are our participants. We went back-and-forth between is it anybody who’s used drugs, is it just women? Is it individuals who had been pregnant? Who is the study population? We ended up agreeing on people who had been pregnant and used drugs. Then we went through, where do we get these people from? We developed a recruitment strategy. Then we developed a survey instrument together. Then we deployed the survey last summer, it got over 300 responses, which was really great.

We had both quantitative and qualitative data. Now the moms wanted to analyze the data. What we did, and this was really fun, I’m going to give a huge shout-out to a PhD student in CPH, Abby Lee. I knew that she was really great at qualitative data analysis, and I am not an expert in any means. I asked her if she wanted to join our team. She developed a training for some of my PhD students and for the Empower moms. The Empower moms trained along with my PhD students about how to create a code book, how to analyze qualitative data, how to use [inaudible 00:07:32], such as a software. They are fantastic. They became the lead coders in this project and we worked together.

We just finished the qualitative aspect of it. Now Grace Gertz, another PhD student of mine, she has developed a training curriculum of how to do the quantitative data using things that are freely available. Not SaaS, because it’s really expensive. She worked really hard to figure out where people can analyze quantitative data. That’s next. That’s just an example of how we work and that’s what we’ve been doing a lot in the Empower Project so far.

Lauren Lavin:

What an incredible opportunity for everyone involved. I can’t believe that you trained so many people to do this work. One, I think anyone listening should then realize you do not have to have any sort of special degree to do this, you just need the right set of training. Which is so cool to me, that makes it so cool. We love to make data and science accessible to the masses. I think it’s even more cool when anyone can do it.

Nichole Nidey:

Yeah, it’s been a lot of fun.

Lauren Lavin:

Yeah, what an incredible project. Do you have results for this? If so, what do people like to be referred to as?

Nichole Nidey:

My answer is it depends. We do have some results. We just finished the qualitative coding and we have definitely looked at the quantitative data. For the quantitative data, we asked participants to rate on a visual analog scale, so you go from I really hate to I really like it, and you pull a slider for 61 different terms. This was a mix between person-first language, language that we identify as stigmatizing, and stuff in the middle. The word that our participants liked the most was survivor. The word that they hated the most, felt it was the most stigmatizing, was bad mother. But then, it was really interesting too because we’re told not to say clean and dirty for substance use tests, like urine screens. This is where it got really interesting, is the word that our participants liked the second-most was clean. The word that they disliked the second-most was dirty. Then there’s a bunch of stuff in the middle.

Now what we’re doing is we’re looking at it by different things. Do people who use cannabis alone, do they have a different preference than somebody whose using opioids? Or somebody who has an alcohol use disorder versus a methamphetamine use disorder? Does that matter? That’s what we’re teasing out right now because it seems like the answer is, as always in a lot of research, is it depends. I think the cool thing that I realized when I was looking at this data is I’ve been hearing from the moms in Empower so often is they’re tired of being put in a box of everybody thinks that all substance users are the same, so they all want to be referred to as the same, have the same treatment plans. That’s kind of what we’ve done with these charts related to stigmatizing language. We’ve put them in this box of how they should be referred. Whereas it’s very clear from our data that there’s a lot of personal preference. We’re trying to tease that out a little bit more.

Lauren Lavin:

Yeah, that’s great.

Nichole Nidey:

Yeah.

Lauren Lavin:

Really interesting. The context matters, yeah, is a recurring theme.

Nichole Nidey:

Yeah.

Lauren Lavin:

In most research, especially when you’re talking about other people.

Nichole Nidey:

For sure.

Lauren Lavin:

Okay. I’m going to have you backtrack just a little bit.

Nichole Nidey:

Yeah.

Lauren Lavin:

What inspired the creation of the Empower Project, and how did it come to be from 2019-

Nichole Nidey:

To now?

Lauren Lavin:

… to today?

Nichole Nidey:

It came from being really annoyed with research. When I was a PhD student, I had one of my dissertation aims was on opioid use. I spent a lot of time reading literature on substance use in pregnancy, trying to write that chapter one of my dissertation. I would come across so many research studies where I felt like the way in which authors described people who use drugs was incredibly stigmatizing and came with a lot of assumptions. Even so much, I got really annoyed that I would follow the citation trails. I’m not going to say what I saw because I don’t want to call anybody out because it’s not really nice, but I would see sometimes. I’m like, “I don’t really think that’s true,” but they would have a citation. I would follow that citation and the paper didn’t really substantiate the claim. We were letting all of this non-substantiated information get through the literature, there’s an assumption about people who use drugs.

Then I started to think, “How would research be different if people with lived expertise were part of the research team?” At that time, I started to look for examples of where people who had used drugs during pregnancy were researchers themselves and I couldn’t find it. I decided after I finished my PhD, the first grant I was going to write was to establish something where people with lived experience would be researchers themselves. That’s what I did when I started my post-doc in Cincinnati.

With that one, we ended up having six moms with lived experience in that study. But first, it was a lot of groundwork. When I went to Cincinnati, I didn’t know anybody, so I just started asking people, “Who do you know that works with pregnant folks, pregnant folks with substance use, or folks with substance use?” I really used this snowball sampling approach in the community where I would have coffee with somebody and they would say, “Oh, you need to talk to so-and-so.” I would meet with the so-and-so. They were like, “Now you need to talk to this person.” I had all these brand new friends who were healthcare providers and led community organizations, they helped me develop my recruitment plan for the initial six moms. Then they also shared that flyer with their clinic and their networks, and that how I got started.

Lauren Lavin:

Very organic growth, and then it just continued that way.

Nichole Nidey:

Yeah. Then after, because it started with a really small grant, it was just a $5000 internal award, but what that did is it gave us some credibility to show that I could engage these folks in this type of work. Then we were able to go on to get much larger federal grants. That’s where we were able to really expand and recruit more and more individuals. It’s really important to me that I’m able to pay the moms in the Empower Project. I only have the number of people in my group that I can afford to pay for their time.

Lauren Lavin:

What are some of the biggest challenges you’ve faced since starting this and continuing it?

Nichole Nidey:

A lot. I think a lot, and I say that in the most fun way. But we’ve existed since 2019 and I would say every year, Empower looks a little different because we have to be flexible and grow with whatever is going on. Both with the moms and the work that we’re doing and funding. I would say the first challenge was actually getting money to start. I think that was really, a lot of it was related to stigma. I would get review responses back from grants and they would say, “This is great idea, but these people are really hard to reach because they’ll never show up.” It was really the complete opposite. As soon as I had funding, the first day, I had all my slots filled and I had amazing participation in the project. A lot of it was the stigma related to how reliable people are who use drugs.

That’s really made me think differently about the term hard to reach populations. When I teach classes, sometimes I’ll say I really hate that term because I feel like it puts the responsibility on the population as if they’re hard to reach, so that’s why we don’t have them with us is because it’s a problem with them. Versus populations we haven’t figure out how to engage with yet and having that responsibility back to us. That was the first thing.

After that, when we had six moms, it was really nice because we were like a small family. Then as we grew, you have a lot of different perspectives in the room. With substance use, there’s all different paths to recovery and lots of people think their path is the best path. When you have multiple paths that are the best paths in the same room, it can get tricky. That was a lot of level-setting, norm-setting within the group and learning together.

Then the other piece of it was that eventually, we had over 30 people in the Zoom room at the same time. It’s really hard to have over 30 people authentically engage in the same place in a one-hour meeting. Something that I do in Empower is I’ll do these engagement surveys after meetings to see, “Did you feel like you could talk as much as you wanted? Did you feel like you were given the respect?” Different questions like that. I could see as our numbers were increasing, the engagement was decreasing. That’s when we decided to break off into small groups where, okay, if you’re really into research, we’re going to have this group of people. If you’re really into disseminating research, let’s meet in this group. That’s when we started making these smaller groups and that’s worked a lot better.

Again, the summer, every summer, I do a SWOT analysis and I learn something new, and then we try it. Then if it works, it’s great. If it doesn’t work, we leave it in the dust and try a new solution. It’s really being flexible.

Lauren Lavin:

Yeah, it sounds really iterative and innovative.

Nichole Nidey:

Yeah.

Lauren Lavin:

You guys are always trying new things. Going back to that hard to reach population, what terminology do you use then?

Nichole Nidey:

I don’t know the right word, but I’ll just say populations that are excluded from research, are often not included, underrepresented. Populations that we haven’t figure out how to reach them. I don’t know the right term.

Lauren Lavin:

Okay.

Nichole Nidey:

I think we should have a different term, but I don’t know what the right term is.

Lauren Lavin:

Yeah. No, I do some rural research and it’s kind of the same deal. You can’t put the blame on them for living in a rural setting.

Nichole Nidey:

Right.

Lauren Lavin:

So what is the terminology we should use that really reflects our ability to engage with them?

The Empower Project works on behavioral change and evidence-based strategies. What are some of the key issues that you guys have addressed?

Nichole Nidey:

Yeah. I’m not quite sure if we’ve gotten to that behavioral change part. I would more think about it as thinking about patient-centered care is where we have gotten so far. A lot of work in Empower has been learning about the experiences that people who use drugs during pregnancy have, and then to take those experiences and inform healthcare providers.

A good example that we had before I left Cincinnati was we were looking at the relationship between experiences of stigma and discrimination and the healthcare setting with outcomes such as going to your postpartum care visit, returning to substance use, experiencing an overdose, things like that. Most of the individuals we recruited for that particular study came from a specific clinic of some collaborators that are really near and dear to me. Unfortunately, when we got the data back in their clinic, we saw a majority of their patients experience stigma. That was really hard to report back to a friend and a collaborator.

But the really cool thing was, as she said, “You know what, this is really important.” She shut down clinic for a day and had us come in and deliver a workshop. We went through the results that we had and we were able to demonstrate within their clinic, the patients that felt like they had experienced stigma had these worse outcomes that they were working so hard on achieving. Stigma is a really, I think, I don’t know if it’s a buzzword right now or still, I’m not quite sure, but a lot of people use that word. But they often times don’t really define it, so it’s hard to nail down. We made sure that we shared stories, experiences, and example of what stigma means to this patient population so they could really identify what it was and what needed to change.

I think that was a cool example of that work. We do a lot of things focused on how do we improve patient-centered care. Because I think people who care for this population really care for them, and often times they may perpetuate stigma or bias, or cause harm, but I think it’s really unintentional. Being able to share back with them what individuals think and how we can improve it has been really cool.

Lauren Lavin:

Yeah. I think that touched on what my next question is. Which is can you talk about the role of science in driving better outcomes for organizations and individuals, and how you further that goal?

Nichole Nidey:

Yeah. I think science is really important, but the science that gets done is done by people who are asking the questions. If you don’t have people who have lived experience of whatever you’re doing, it doesn’t matter if it’s substance use or trying to understand why we love dogs so much. I only say that because I’m sitting next to mine. If you don’t have that lived experience, you’re not going to ask the right questions, nor are you going to interpret the data appropriately. I think the first thing to improve the rigor of our science is making sure we have the lived experience there. That is a way I think we can drive really good outcomes.

I’m trying to think of a good example of data. Okay. In the beginning of Empower, I did some listening sessions just to learn about the experiences of the moms in the project initially. They started talking about what the NICU meant to them, the neonatal intensive care unit. As an epidemiologist, I’ve worked with a lot of healthcare data, so I can see if the baby has gone to the NICU. Usually, the way that I’ve viewed it as a research is this baby was born early or this baby was really sick. That was my lens in how I would interpret it. But also six moms in the room had the relationship with the NICU with Child Protective Services. Their experience, they had said that if their baby had to go to the NICU, that meant they had a 100% for sure Child Protective Services case. I don’t know if this is true everywhere, but it was true for these six moms.

If they were to see healthcare claims data, EHR data, and they would see a NICU note, that’s what that data means to them. Because of those conversations, I look at that data completely differently and interpret the results. But I never would have had that thought without them at the table, talking about it.

Lauren Lavin:

If students are listening to this and realizing that maybe their topic of interest they don’t have lived experience in, what would you suggest that they do in order to get the nuance that you’re talking about?

Nichole Nidey:

So many things. I listen to a ton of podcasts. It doesn’t matter what your topic is, search your topic area in podcasts. You will find patients talking about their experiences, they’re everywhere. The other thing is books. I read all the time. I am always reading a book about substance, either memoirs. They could even be fiction formed by true events. But I’m always learning about experiences of people who use drugs by reading. Then looking for YouTube videos. There’s so much content out there right now, I think it’s easy to find. If you don’t have the money, or the grant money, or the time to go and do interviews with people and get those nuances, I think you could utilize existing resources. Podcasts are amazing. I listen to them all the time.

What else? The other thing is joining boards. You should give back to the community, but you’ll hear a lot of really interesting things in those capacities as well. You need to leave the College of Public Health, and go to a different setting, and go to places where the people you care about are and spend time there. Then you will pick up those connections and those nuances, I promise.

Lauren Lavin:

Great actionable tips. And free.

Nichole Nidey:

Yeah. Free.

Lauren Lavin:

Which we love as students.

Nichole Nidey:

Yeah.

Lauren Lavin:

I feel like every single time I come to a question I’m like, “You’ve already touched on this.” But do you have any other standout success stories or impactful moments that you want to highlight that you haven’t yet?

Nichole Nidey:

Sure. I have gotten to a point where, if somebody asks me to give a talk about Empower, I will always ask, “Can an Empower mom come with me?” Or, “Can you have them do it instead of me? Is there any way we can do it together?” Because one of the goals we have at Empower is capacity building, which includes disseminating research and science. Recently, myself and an Empower mom went to Washington, DC. We were there I think in January at ACOG, which is the American College of Obstetricians and Gynecologists, where I was asked to give a talk about patient engagement. It was really fun because they said, “Yes, we’ll pay for your mom’s trip.” She stayed in the Ritz-Carlton, which was really fun. They paid her a speaking fee.

This is the first time that she had given an academic presentation. I felt the same level of pride as when I see my students present something because her and I had worked together beforehand on the slides and practicing back-and-forth. She was really nervous beforehand and stood up there. That was really great. But the thing that was so exciting and that I loved was, after her talk, we ate in the hotel restaurant. We couldn’t even eat because so many people kept coming up to our table and stopping, and talking to her about her talk, and telling her how amazing she was. It was the coolest thing. I loved it. It was so fun.

Lauren Lavin:

That’s incredible.

Nichole Nidey:

Yeah.

Lauren Lavin:

Those are the things that make research even more impactful and meaningful. It’s one thing to do it and read a paper, but it’s so much more impactful when you see it lived out.

Nichole Nidey:

Yeah, yeah. It was really cool.

Lauren Lavin:

Any future projects or initiatives that you’re really excited about?

Nichole Nidey:

Yeah, a couple of them. In this past year, I was a Fellow with MIT for their SUD Innovations Bootcamp. I spent about a year learning how to innovate. I spent a lot of time with some digital tech folks. When I was there, I met this whole new community of people who I didn’t know existed. I’ve been working on different ways to include them in research, because something that I noticed is I know nothing about startups, businesses. All of that stuff is a foreign language to me. But I recognize that, while there’s a lot of good intent in those spaces, the understanding of patient-centered needs was missing. That’s something that I think we as researchers can bring to that space, so I’ve been working hard at trying to build some cool stuff with them and write some grants together to work on that part of it.

Lauren Lavin:

Bringing some research to the startup space, that’s definitely needed.

Nichole Nidey:

It is. I think maybe one more thing that I’m excited about is with the new faculty award this year, I’m working on a project on stigma in clinical notes. Whenever you ask any of the moms in Empower what the biggest barrier to healthcare is for them, they’ll tell you that it’s stigma when they interact with healthcare providers. It’s really hard to measure in the moment. Something that they have shared is often times they’ll see stigmatizing language in their clinical notes.

With all the research training they’ve had, what we are doing is we are recruiting patients right now in different clinics to be in the study. But a couple of the Empower moms are annotating a series of clinical notes where they’re identifying where they see stigma in the notes. We’re going to take that annotation to develop essentially an annotation guide to use for the rest of the notes. Were then my students will annotate clinical notes for stigma with the hope of developing a future large language model to identify stigma within healthcare notes to help improve language there.

Lauren Lavin:

Wow!

Nichole Nidey:

I’m pretty excited about that one, too. Yeah.

Lauren Lavin:

Yeah. That’s a cool use of technology. If people are interested in your work, how could they get involved or support the Empower Project?

Nichole Nidey:

They can give me all their money. I’m just kidding, but not really. They should send it all to us. No, we have empoweroutcomes.org is our website. There’s a lot of information on there. I have a lot of students that help out with different projects with Empower. If there are students who want to get experience in patient engagement and collaborative type work, to send me an email.

Lauren Lavin:

Perfect.

Nichole Nidey:

But you might need to send me three emails because I’m always 500 behind, so just keep sending them if it takes more than a week to write you back.

Lauren Lavin:

That is how email work, I get that.

Nichole Nidey:

It does, yeah.

Lauren Lavin:

Okay. We always end with a little fun question. What’s something that you’re reading or watching right now?

Nichole Nidey:

Right now, I am read … I got to look up the real title so I don’t mess it up. I just picked it up [inaudible 00:29:12] the other day. It’s a methods on ethnographies. It is called Virtual Ethnography. It is a book on how to do participant observation in virtual spaces. When I got the book, I thought it was going to tell me different ways I could do participant observation in close social media groups because I’m in a couple related to substance use in the work that I do. But when I started reading it, it’s about people who have done research on World of Warcraft, and all of those. It’s really funny, but I think there’s a lot of good things in there. It’s new for me, because I don’t know a lot about those games, but that’s the book I’m reading right now. Virtual Ethnography.

Lauren Lavin:

That’s super fun. Love that. Okay. Well, thank you so much for spending a little bit of time with me this afternoon, I really appreciate it. I learned some really cool new things. I can’t wait to see that work that comes out of Empower Project going forward, too.

Nichole Nidey:

Thanks. Me, either. It’s always a new day.

Lauren Lavin:

That’s right. Well, thank you so much, Dr. Nidey. I hope you have a great rest of your day.

Nichole Nidey:

Thank you.

Lauren Lavin:

That’s it for our episode this week. A huge thank you to Dr. Nichole Nidey for joining us and sharing the evolution and impact of the Empower Project, from redefining what it means to be hard to reach to empowering people with lived experience to lead research themselves. This conversation highlighted the importance of flexibility, collaboration, and centering the voices of those most affected by public health challenges. Key takeaways, that research is most powerful when it’s co-led with communities. That language can stigmatize or heal. And that with the right training, anyone can be a researcher and a change maker.

This episode was hosted and written by Lauren Lavin, and edited and produced by Lauren Lavin. You can learn more about the University of Iowa College of Public Health on Facebook. Our podcast is available on Spotify, Apple Podcasts, and SoundCloud. If you enjoyed this episode, please share it with your friends, colleagues, or anyone interested in what truly equitable public health looks like. Have a suggestion for our team? Reach out at cph-gradambassador@uiowa.edu. This episode is brought to you by the University of Iowa College of Public Health. Until next week, stay healthy, stay curious, and take care.