176: Operation Change: Breaking the cycle of pain, immobility and chronic illness, one woman at a time
Americans are on track to need 1 million knee replacements annually by the year 2025. The rate of disability caused by degenerative joint problems is also on a rise. At the same time, rates of physical activity continue to decline, and sedentary lifestyles and obesity are becoming the main cause of diabetes and heart disease.
It's a vicious cycle of pain, immobility, chronic illness, all of which impact underserved populations most. It’s why Movement is Life created Operation Change – an evidence-based behavioral change program focused on grassroots community interventions.
Operation Change has programs running in cities across the U.S. In today's episode, Health Disparities podcast host Chiara Rodgers speaks with two people involved in the Operation Change chapter in St. Louis:
- Dr. Darlene Donegan, program director for Operation Change St Louis
- Dr. Kiaana Howard, assistant professor of physical therapy and orthopedic surgery at Washington University School of Medicine in St Louis
A note to our listeners: Operation Change will be featured at Movement Is Life’s upcoming annual summit, which brings together stakeholders from diverse backgrounds to discuss healthy equity challenges and actionable solutions.
This year’s theme is: "Health Equity: Solutions from Healthcare Leaders.” The summit will take place in Atlanta, Georgia, from November 14 to 15. Registration is now open – find all the details at our website, and get signed up today!
Never miss an episode – be sure to subscribe to The Health Disparities podcast from Movement Is Life on Apple Podcasts, YouTube, or wherever you get your podcasts.
The transcript from today’s episode has been lightly edited for clarity.
Kiaana Howard: It is still unfortunate that we are still having these conversations of health disparities affecting our community, Black and Brown communities, especially in different parts of the U.S. I think this program, Operation Change STL, is so unique because a lot of the participants in the program are either individuals that have experienced these disparities, or they know someone very close to them that is also experiencing these disparities. So a lot of times with these disparities, they're called social determinants of health. And social determinants are many factors, because as humans, we are very complex individuals, so we are not one size fits all. So there's a lot of factors that kind of determine health outcomes.
Chiara Rodgers: You're listening to the Health Disparities podcast from Movement is Life. I'm Chiara Rogers, member of the steering committee and movement is life. And I also serve as Senior Director of Research and Humanitarian Activities for the American Association of Hip and Knee Surgeons. Americans are on track to need 1 million knee replacements annually by the year 2025. The rate of disability caused by degenerative joint problems is also on a rise. At the same time, rates of physical activity continue to decline, and sedentary lifestyles and obesity are becoming the main cause of diabetes and heart disease. It's a vicious cycle of pain, immobility, chronic illness, all of which impact underserved populations. And it's this reason why Movement is Life created Operation Change -- an evidence-based behavioral change program focused on grassroots community interventions. Operation Change has programs running in cities across the US. In today's episode, we'll be speaking with two people involved in the Operation Change chapter in St Louis. Dr. Darlene Donegan is Program Director for Operation Change St Louis. We're also joined by Dr. Kiaana Howard, an assistant professor of physical therapy and orthopedic surgery at Washington University School of Medicine in St Louis. Both of you, welcome to the Health Disparities podcast. Thanks for being here.
Before we dive into today's podcast, I do want to put a plug in for Movement Is Life's annual summit. Operation Change will be one of the incredible health equity programs featured at this year's summit. This year's theme is health equity solutions from healthcare leaders. The conference will take place in Atlanta from November 14th through 15th. It's an incredible event, bringing together stakeholders from diverse backgrounds to discuss health equity challenges and actionable solutions. We hope you can join. Visit our website, MovementisLifecommunity.org, for all the details.
Thank you both again for being here. Darlene, let's start with you. Tell us about Operation Change St Louis, which I know to be a phenomenal program. There's also an Operation Change program in Chicago, so I'm very familiar with how everything works, but I really want to know the difference with St Louis, and what was the impetus of bringing this program to St. Louis back in 2018?
Darlene Donegan: So originally, one of the steering committee members from Movement is Life brought the program to St. Louis. We have an extreme health disparity in our community amongst people of color, and so we wanted to do something to address that. And because at the time, Sean, he was the steering committee member that brought it to St Louis, he felt like it could make a difference. So I originally was brought on as a speaker for the program, and I just fell in love with it, to be perfectly honest, and I saw some ways that it could grow. And so eventually I ended up taking over the program in 2022 and that's where we really, after the pandemic, saw the need for this program, particularly in St. Louis, amongst the population we serve. And at the end of 2022, that's when Dr. Howard had reached out to me to be of service as well to the St Louis community.
Rodgers: Awesome, so Dr. Howard, tell us a little bit about yourself and what made you want to get involved in Operation Change.
Howard: Yes, absolutely. So I am currently an assistant professor at WashU School of Medicine in the physical therapy program. But. I'm also a practicing physical therapist, where I treat patients that come from that have orthopedic conditions or neurological conditions in the outpatient setting. So a little bit about my background. Prior to coming to St. Louis, I had a big hand in just health disparities, right? I really wanted to kind of get engaged and involved in my community. And how this emergence came about was one of my patients was actually a program member at Operation Change, and she came to me was like, Oh, you would be a good person to, you know, speak, because Operation Change, week to week, they have different speakers from the community. It's, you know, speaking to this group of women about any and everything, right? It can be from health behavior change to finances to becoming an advocate for themselves, healthy eating, anything you can think of. So she thought, I'll be a good addition as a speaker. So I reached out to Dr. Donegan, late, 2022, '23 and thought it would be a really good idea to merge our student physical therapists with this awesome program.
Rodgers: That's awesome. And can you talk a little more about getting the students involved in Operation Change, the physical therapy students? I think that's really a great idea.
Howard: Absolutely, I think, prior to me being on faculty at Washington University, I'm not sure how much, and I don't want to misspeak, but I thought this would be a good way for the students to kind of be involved in the community. A lot of times we have different organizations where community members can come to us, but I thought this would be a really good opportunity for our students to kind of experience firsthand, you know, in St. Louis. Sometimes I know for myself, being a student, especially in graduate school, you're so locked into your own bubble, you kind of don't know what's going on around you. So I thought this experience will give great exposure with our students as well.
Rodgers: Yep, that's awesome. Darlene, so I like to dive a little bit deeper into the elements of Operation Change. So I know there's three main elements, discovering new and novel ways to keep moving, receive health information from trusted voices, and three, participate in small group discussions to allow them to identify personal insights and motivators for behavior change. Can you help us impact these a little bit more?
Donegan: Yes, so it's an 18-week program that runs for three hours. So the first hour, we bring in speakers, and I intentionally look for speakers that are speakers of color and that are women, and the reason why is because the women in our program feel more of a connection naturally, they tend to be more open and understanding and talk at the level that our participants can understand. So we bring in different speakers, as Kiana mentioned, on all different types of topics, and usually they run for about three weeks on a particular topic. So we start with mental health, because this is the part that if you don't address the mental, everything else is secondary. So we want to know that you're okay. And then we go into social supports, because we work with older women, and a lot of times they are isolated. And so who are your social supports? Who are the people that are going to help facilitate and maintain that change that we're trying to get you to make? And we have a nutrition module. We have providers that come in. So Dr. Howard was one of the providers that came in. She actually came in at our week 17, so right before the final closing, and summed up everything for the whole program beautifully. And we have access to care, because a lot of times when you're dealing with the Medicare system and the health care system in general, it's very, very challenging for our participants.
So this education is very rich, but we don't want it to stay in their heads. We need them to actually execute what they're learning. So they go into small breakout groups every week they have a group leader who is a facilitator for them, not an educator, which is very important. So they facilitate the groups to work together to set SMART goals that are achievable, that are manageable. Throughout the program, they celebrate those goals as a group, and if the goals are not met, then they help the person, the individual, to make changes or modify so that they can be successful. And so once they finish the program, they can know how to set real goals for real change. And then we end with movement and this is very important, because the movement specialists we bring in harness their movement towards our population. So we make sure that the movement specialists understand how to modify for older adults, they know how to actually look at what is going on. And if there needs to be someone that maybe that we don't participate in the movement, then they will be able to say, Hey, okay, maybe you need to sit down. Maybe you need to modify so it's really in depth, and it's really intentional the way the program is set up from week to week, so that these ladies can be successful, not just during the 18 weeks, but over the course of the rest of their lives and to build strong relationships that can help them maintain that change.
Rodgers: That's awesome. So it's really about the participants building, cultivating a community to help cultivate behavioral change long term, so they feel more confident taking agency over their health care. And I just think that's one of the key differences to make this program different.
Donegan: Absolutely.
Rodgers: Kiaana, we know that chronic illnesses disproportionately impact underserved groups, including African Americans and Latina women. What do we know about the underlying drivers of these disparities and what can be done to help address them?
Howard: Yes, it is still unfortunate that we are still having these conversations of health disparities affecting our community, Black and Brown communities especially, in different parts of the U.S. I think this program, Operation Change STL is so unique because a lot of the participants in the program are either individuals that have experienced these disparities, or they know someone very close to them that is also experiencing these disparities. So a lot of times, with these disparities, they're called social determinants of health. And social determinants are many factors, because as humans, we are very complex individuals, so we are not one size fits all. So there's a lot of factors that kind of determine health outcomes, and because of historically systematic racism in our country and different systems that have been put into place that have negatively affected Black and Brown communities or marginalized communities, it makes them having health outcomes a little bit more challenging than someone who is not from these communities. So for example, a social determinant of health would be someone having equal access to health care. Maybe somebody having equal access or access to a grocery store to eat the proper foods to make sure they're staying healthy. Maybe access to a safe environment. A lot of times, providers may just tell their patients, oh, you need to exercise. Well, if we're not asking adequate questions about the environment that they're in -- maybe it's not safe for them to go outside, right? Maybe their house is right in front of a two-lane busy highway, and it's not, you know, it's not safe for them to go outside. So a lot of things that we could do as healthcare providers is just dig a little bit deeper into these social determinants, right? Like, what are some gaps that our patients are having where it is causing them to have lower health outcomes than others, right? Is it health literacy? Is education? Is it their neighborhood, right? Do they have a good support system, as Darlene alluded to in the beginning of this conversation? So these are a lot of different things that can impact us, and because of different systems that have been put into place.
I know, historically, St. Louis is pretty known for the redlining. And redlining is when there are certain areas in the city that have good resources and there are certain areas in the city that don't have resources. And this was intentional from the previous governments you know before. So for example, in certain zip codes in the city and county of St. Louis, there is a 10 year gap between life expectancy, which means someone in individuals in a certain zip code may live longer than individuals in another zip code, and we're in the same city, right? These are the things that are unacceptable, quite frankly, and these are the things that we are, I think, Operation Change does a fabulous job of educating their participants, because a lot of people, you know, when you are living your life, you don't know what's going on, right? So we have different speakers to come in, such as myself and other great individuals to come in and kind of elaborate and highlight these things so that these participants can be better advocates for themselves and again, thus better advocates for their own communities as well.
Rodgers: That's amazing. And Darlene, taking into account some of these barriers to access, right? How what do you do as far as outreach? What are some of the things you do to get people to benefit from this program? What do you get, what do you do to help them learn more about the program? And what are some of your outreach? How does some of your outreach work?
Donegan: So what we found is that we have to use word of mouth. This is what we do. So the members of our team, we are active in the community. So we don't depend on social media, we don't depend on advertising. We get into the communities that we're certain are amongst the age group of these women. So they're our sisters, they're our cousins, they're our aunts, and we just advocate for them, putting themselves first. Women of Color tend to have a tendency to put others first, take care of the family, take care of the parents, and then put themselves second. So we really go out and try to get women -- just take three hours just for you, and you'll learn so much that can help not only you, but your family, your friends, your church family. And this has been tremendous.
Another thing that we do in St. Louis is that all the members of my team are graduates of the Operation Change program. This has been phenomenal because they know firsthand the benefits of the program, and they can tell their story. And the other thing that we do is we invite our speakers and our movement specialists to our community town halls, and so these healthcare professionals can go back to their clients, to their patients, and say, Hey, there's a great program. Why don't you, you know, reach out to Darlene and you know, and find out more about it, this might help you and whatever situation you have going on. So this has been very successful working this way, because people tend to trust others that look like them. And you know, and tell the story about how this worked for them. And a lot of our graduates are great promoters of the program. So when we do have a community Town Hall, they're bringing four or five people in. 'Come on. You gotta just hear what they have to say.' And this has been really the key to getting people to engage. It's just hearing the stories, going out to the people and advocating for them to put themselves first.
Rodgers: Awesome, Darlene and Kiana. What advice would you give people in other cities, other communities trying to do similar work around health disparities?
Donegan: I would say that the Operation Change model is so unique because it's three-fold. So there are a lot of programs that simply have a speaker series, or might have movement specialists come in. We call them movement specialists, really exercise instructors, but you don't have programs that actively work to facilitate change by having created a community and advocate for that community to continue to be there for each other, post programming. So it's not about the individual. Once you're in Operation Change, it's about that family that you have created that's going to support you in whatever goal you decide, also that you're creating your own goals. A lot of programs have a goal. You come in, you're coming in for weight loss, or you're coming in for ABC. With Operation change, we're saying, What is your goal? What do you want to change? And how can we help you facilitate that change? And bringing in community partners, bringing in speakers that come in on a weekend, that come into churches or come into community centers and talk to them, that speaks volumes like our participants are so grateful for the people that come in and talk to them, because they know that that person took the time out their busy schedule to give it to them so. So the Operation Change model, I think, is exceptional. And if people want to start a program, they need to contact Movement is Life, and ask about, how do I start an Operation Change program in my city?
Howard: I think I'll give a little touch from the provider perspective. I think if there are any providers out there in healthcare or mental health, I think a really good way to bridge the gap between this historical distrust of our communities having with the healthcare system, it will be to actually go into the community, right? Not put out flyers, not put out posters for research, because that rubs a little bit of feather sometimes, but actually put yourself in the environment of these individuals, where they live, where they eat, where they work, where they play, you know, their children. And I think that really brings a genuine relationship, not only for these community members, but also for your you know, facility or institution, right? Because now you have these community members that are trusting of you, right, and they're more likely to come to you for any kind of healthcare advice, or they're more likely to trust you when it comes to their own health and safety. A lot of times we have and due to historical circumstances and situations that have happened in our histories past, right where a lot of Black and Brown individuals were unnecessarily going under experimentation at some health institutions, we have a Black maternal health crisis right now where a lot of Black women and Hispanic women are dying at much alarming rates than white women. So I think when we have our healthcare providers, our institution institutional leadership, right, kind of put yourselves in that community setting, I think it really bridges a gap, and it promotes and facilitates genuine connection and genuine collaboration with the community.
Rodgers: And Kiaana, what types of feedback, especially as a provider, have you received about Operation change?
Howard: I've had really good feedback for the Saturdays that I have come with the students, so I didn't get a chance to explain what our students actually do. So Operation Change, Darlene alluded to they have an 18-week program, and we came in to help with the health screenings in the beginning, midpoint and then ending of the program, so that way the participants can have a gauge of how well they're doing at baseline and then all the way up until when they finish and graduate the program. So our students, they come in and they provided blood pressure. They were also there as support roles for Dr. Donegan and any of her staff if they needed any assistance anywhere else. However, from the most that I have come and the Saturdays that I have come up there, I got pretty positive feedback. I think a lot of the ladies enjoy seeing the students come over. I know I enjoyed that interaction as well. I'm not sure Darlene, what other people have told you, but this is just my perspective. When we do come in and we provide these services, so I think it's a very positive outlook.
Rodgers: And Darlene, you can answer too. You have firsthand knowledge of the feedback from participants, especially the one returning participants or those who stay involved in a program, speaks volumes. So what type of feedback have you received?
Donegan: Well, first, I want to speak on the students that come because this is the first year that we've had Washington University physical therapy students come in and we love it. The staff loves it because we're not trained as a healthcare provider. So for the students to come in with their manual blood pressure cups and to take the blood pressure and they have smiles on their face and they're just warm and friendly. So we all love them. The staff loves them, the participants love them, and they are such a big help. So that's amazing. It's an amazing partnership. The students are always like, Oh, this is so great. And the main thing that I hear is that I never heard of this. I never heard of this, so I didn't know this existed. The participants, they say this saved my life. This has been phenomenal. Oh my God. The first thing they say when they sign up is '18 weeks, that's a long time,' because they can't miss, they have to be there for 18 weeks. And then at the end of 18 weeks, they're like, 'I can't believe it's over. It went so fast. This is amazing. Oh my God. What great speakers. These are my sisters. Oh my God.' We have people that by the end their BMI is lower. They have lower blood pressure. Sure, so they're excited. So the health screenings and baseline midpoint and at the end is so imperative, so they can see the biometrics showing, yes, you're making a change. They also take screenings to see, hey, how do I feel mentally? So they're less depressed. They feel better about themselves. They have a better outlook on life. So it's amazing what the participants say. They show us so much love, and the program so much love. And like you said, one of the key things is they come, they want to come back, or they bring other people back to other programs, and that's how we've been able to maintain an ongoing program. It's just those participants that graduate. They bring others and say, Hey, try Operation Change.
Rodgers: I love that. I love it. And since it is 18 weeks, what are some of the tools you use to make sure that these behavioral changes last far beyond the end of the program?
Donegan: Great question. So what I have done personally in St. Louis, and we'll be implementing this and other programs in the future, so for our 2023 at the end of that program, we had a reunion at the beginning of 2024 for all prior programs, and we gave an assessment that we created just to see, are you maintaining these changes? You know, are you staying connected with the women that you were in the program with? And it was widely attended. The feedback was amazing. So we also all the members of my team, which are called MIs, which are motivational interviewers, that's our group leaders, so they all have monthly meetings. It's informal. They go to a restaurant, they go over each other's houses, and they get together as a group once a month. And so all the prior programs, those MIs are meeting with their former participants in their groups every month, so we are trying to check in to make sure that they know after 18 weeks, we're still there for them, but hopefully in the future, we'll have a more formalized way of meeting more regularly with our participants to engage change.
Rodgers: Awesome. Kiana, when you meet these participants of Operation Change St. Louis, what's your message to them, especially when, as they proceed on this journey to healthier, better them and more movement, what do you what do you instill in them?
Howard: Yes, I think this kind of goes back to the presentation I gave at week 17. So the premise of that presentation was called preventative medicine, because essentially, everything that the ladies have went through as far as what lessons they've learned and what analysis they've gained from being in the program is all about prevention, right? There are lots of studies that show that African American women are at higher times likelihood of having hypertension. You know, a lot of communicable diseases like hypertension, high blood pressure, cardiovascular risk, right? So the whole premise of my talk was talking about how to be a better health advocate for yourself when you're in that doctor's office. And then how do we continue these learnings and these teachings that you have in the knowledge that you gain over 18 weeks and continue to implement that throughout your daily lives from now until forever, essentially. So my main message was to continue with the momentum that they have right now and just continue to make strides to implement the preventative medicine and the preventative tools so they could be at lower risk for any kind of health condition in the future.
Rodgers: And Darlene, what would as Operation Change St. Louis director, what would be some of your goals and your hopes for the program moving forward?
Donegan: Well, our goal and our hopes is to be bigger and better. So for 2025 we're looking to have two programs per year, as opposed to one program per year. And so this way we can impact more women. We can have more opportunities for different women to participate in the program. We also want to bring in some of our former graduates to be ambassadors, so they can help the new women coming into the program to achieve their goals and learn about what we're about and help advocate for their own behavioral change. So the other thing that we hope to do is to actually assess post programs starting in 2025 so we're hoping that at least twice a year post programs, we can assess those women to have an official, some type of official record to show, Yes, they are maintaining the behavioral change, and this is the data to support that. So those are really what we want to do moving forward in 2025 give women more opportunity to participate by having more programming and to have post programming. Oh, and another thing is we're going to be working a little bit closer with Dr. Kiaana Howard in 2025 so talking about how we can utilize WashU services and resources for Operation Change in 2025 and we are open to more community partnership. So we really would like for all different type of community partners to come in and partner with us, because we're all on the same mission to help people with disparities, to get rid of these disparities. Like Dr. Howard said, this shouldn't continue to happen in the future,
Rodgers: Absolutely. And if you, either of you want to share your website or social media handles, I'll just allow a little space for that so people can get in contact with you and see the great work that you're doing in St. Louis.
Howard: So if anyone is on LinkedIn, you can follow me at Dr. Kiaana Howard. PT, DPT, or if you're on Instagram, you can follow me at Dr. Kiaana H on Instagram. Um, my email is Kiaana.Howard@wustl.edu If anyone has any questions or wants to get in connection or any other future projects or developments.
Donegan: And if anyone wants to learn more about Operation Change St. Louis, or reach out to me directly. You can reach me and learn about our program from our website, which is operationchangestl.org, so just feel free to go to the website and send me a message.
Rodgers: Awesome. You can learn more about Operation Change at our website, movementislife.org/operationchange. We'll have a link to this website in our show notes. I'd also like to thank my guests, Dr. Darlene Donegan and Dr. Kiaana Howard again. Thanks for being with us and talking about the importance of Operation Change St. Louis and the importance of community partnerships and community building. That brings us to the end of this episode of the Health Disparities podcast from Movement is Life. Once again, you can learn more about Operation Change and our many other exciting health equity initiatives in person at our upcoming annual summit. Registration is open and will be in Atlanta from November 14 through 15th at the Whitley Hotel in Buckhead. Please go to our website to find out more information and to register movementistlifecommunity.org. I'm Chiara Rodgers, until next time, be safe and be well.