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We are the Maternal Health Learning and Innovation Center, a network of maternal health equity experts and organizations working to make real change for women and birthing people in the U.S.
Our podcast is a series of episodes connecting around culture, lifting voices and stories, exploring innovations in maternal care and discussing ways we can center equity in the way we approach our health and wellness.
Learn more about us, explore our resource center and find support for all maternal health professionals at MaternalHealthLearning.org.
For more podcast information and content, visit MaternalHealthPodcast.org.
Deitre - 00:00:04:
Hi, I'm Deitre Epps, the CEO and founder of RACE for Equity and the podcast host for today's podcast. Engaging people with living experiences, in the Maternal Health Task Force. I am here and joined today by three Lived Experience Advisory Group members who've been working together for about the past five years as at first as a part of a maternal telehealth access project engaged in an evaluation team with RACE for Equity as we looked at advancing maternal health equity during COVID-19 pandemic. And so this group has been together for a little while, and we're going to talk about that. This is the third podcast in a series of podcasts. If you haven't had a chance to join the first two, go back and take a listen. The first one was about engagement. How do you engage people with living experiences in your Maternal Health Task Force? In the second session, we spoke about how do you encourage LEAG members so that they're feeling valued and as part of your Maternal Health Task Force. And today we're going to talk about how to sustain people with living experiences as... Valued members of your Maternal Health Task Force. So let's start off by asking each of our participants today to introduce yourselves. These are folks who I've been working with for the several years now, and I'm happy to share with you. That as we close out the Maternal Health Learning Innovation Center. This is a valuable resource that you're leaving. For maternal health innovation sites. So let's talk first about, you can introduce yourself and just tell a little bit about what are some ways that someone can, from a Maternal Health Task Force. Can make you feel listened to.
Courtnie - 00:01:59:
I'm Courtnie Carter. I am located in North Carolina. I am a maternal health advocate, maternal mental health advocate, specifically Black maternal mental health. I'm a boy mom of two. And just here to help get my voice, but also help others by sharing my experience. In some ways that it would be helpful to feel listened to if I were involved with the Maternal Health Task Force would be just being allowed to be a part of the process from beginning to end. Given opportunities where one might think that a lived experience person doesn't need to be included, but to be included into those things. And I think that's what I would just say.
Megan - 00:02:43:
I'll go next. My name is Maya Jackson. I am a mother of five in North Carolina. I run a community-based maternal health organization called MAAME. And we focus on lived experiences of the community that we serve, but also the people that are providing the work. Because that helps shapes our advocacy on a policy level, as well as just how health systems are working to serve communities in which we serve. Um, I think having someone with lived experiences at the table is crucial. But I also think making sure that we value community members' time, whether it be being flexible with meeting with them, but also paying them adequately because they're consulting. And so if you really value them, you definitely want to make sure that you are compensating them for their labor.
Maya - 00:03:40:
My name's Megan McKenzie. And I think If I were going to be invited to know that I was being listened to, I would want the leader of the group to get to know me and get to know what brought me into this work. And then... Be able to be brought into opportunities for learning or for offering feedback or Just being able to participate in the process, again, echoing what Courtney said, even if it's not something that they would expect someone with lived experience to be included in. I really appreciate being included in things because it really helps my professional development and helps me see and explore what other opportunities I might want to take up as far as educational so that I could. Um, also further help. Promote and better maternal health.
Deitre - 00:04:44:
Thank you. So as you... Share your experiences as people over the last five years who've been engaged with the Lived Experience Advisory Group. I know that there have been changes over that timeframe, not just changes in our environment, right, because you started during COVID-19 pandemic, but also changes in terms of the structure and the way that the Lived Experience Advisory Group came together. So can you talk a little bit about when we shifted to the Maternal Health Learning and Center? And you were asked to represent the voice of individuals with living experiences of maternal health inequities. Um, What? How did you know that you were being listened to when you were engaged in a project with different, when you were asked for support, how did you know that you were being listened to?
Megan - 00:05:43:
I think just seeing, you know, my feedback being written down and also discussed or given space to be able to share an opinion. It was I felt like it was always an inclusive collaborative, collaborative process versus just kind of the folks with all the degrees kind of leading the charge. And I felt like the other team members felt that as well, that they felt really comfortable being able to express themselves without feeling. Feeling that valued in a space.
Courtnie - 00:06:19:
I would echo what Maya said. It was great to like, like we would give our opinion on something and Deitre, you, yourself or your son, Zachary would say, you know, can you repeat that? Can you tell us a little more about that? Like, it really sounded like you really wanted to know about that experience that we had or why we had the opinion that we had.
Maya - 00:06:39:
Yeah, the asking questions was huge. Asking questions of those offering their information shows us that you're listening and that you care.
Deitre - 00:06:52:
Thank you. Asking questions shows us that you're listening and that you care. So if someone is on a Maternal Health Task Force and it might be their first time representing someone, people with living experiences, they might feel a little hesitant to share. Right. So as they're sharing, you know, you're being listened to when someone responds to you back with a question. And so that's the first step is listening. And now I'm wondering if any of you has an example of where you saw what you shared was actually part of a decision that was made. How did you know that your idea was included in a decision as a lived experience member?
Courtnie - 00:07:32:
I wouldn't say this is an example of like a decision being made, but there we expressed interest in wanting to present at different symposiums or different conferences that were being had and we were supported in that and given the space and the support to help build our send-in abstracts or if we needed help with building out our presentation, we were given the opportunity. We were given the support to get that done. In the space to actually share our lived experience and other places.
Deitre - 00:07:49:
Thank you Courtnie, so I would say that that is an example of a decision because you were there were abstracts, there were publications. There were conferences. Had you had this experience prior to being a Lived Experience Advisory Group member? Had you had the experience of asking to be in a presentation and it happened or or was this the first time you presented in these ways? Anybody can answer that.
Courtnie - 00:08:35:
It was the first time with me and it was a snowball effect. I feel like I've done the most in the last couple of years since joining the LEAG and it's been great.
Megan - 00:08:45:
Yeah, I think when I started out doing this work in community, I think it was like definitely a struggle for us to get, you know, institutions and other groups to recognize the value of community input. I always felt like it was a push and pull type of dynamic to be able to advocate. But working on this project, there was definitely just respect for what we had to say. And it was almost like I just felt like Courtney said, like I just felt like people knew it was more valuable for our voices to be the ones that were presenting versus, you know, the academic stakeholders on the team. And we eventually won Deitre. I forgot which one it was. I forgot which presentation that it was that we did, but I was not expecting to get an award that day. But clearly, they valued our experiences. So, you know, it shows the impact. And so, yeah, at this age, I would have never thought that I would be, you know, in academic spaces presenting public health data and talking about the impact of this work. And I'm truly grateful for that because it's definitely shifted the trajectory of where I thought I was going to be at this age in my career. So, yeah, it's been a phenomenal experience.
Deitre - 00:10:09:
So Maya, thank you for bringing that up. It was the National Perinatal Association. And I do think that I want to pause for a minute and just recognize the importance of that and celebrate that, right? And so the question was really, how do you know that your ideas are included in decisions? And so you, as a group, presenting a poster presentation at the National Perinatal Association and then winning as a research award around the maternal telehealth access project evaluation was indeed a surprise. And it was a pleasant surprise. I want to reiterate that part of the success of that poster presentation was because it was from your voice. Maya, you were there presenting. Courtney, you were there presenting. And it was the people you were presenting to were paranatologists. They were they were, you know, folks who came from very academic environments. And so I commend you and I give kudos to each of you because your voice not only was valued, but it was recognized and awarded. So. So. So, yes, thank you for bringing that up. I think that's a very great example. You recently came back from presenting at City Match, the National Maternal and Child Health Conference. And you presented about developing a Lived Experience Advisory Group. So when you think about that presentation and congratulations again on that. But when you think about that presentation, what are some gold nuggets that you might share? With people who are doing a Maternal Health Task Force that you shared with the folks at that conference?
Maya - 00:11:53:
I think compensation is going to be an important. Topic, you know, to research and maybe think about before you develop your lived experience group. I think that it's important to know. That these groups can be tough to join because... If they're a part-time role, it can be hard to provide for a family with a part-time role, even though it was astounding compensation. So just thinking about whether or not you're going to be able to offer something more full-time or whether or not for compensation, if you start at one level of compensation, are you going to be able to increase that compensation? At the same time, I think that it's important to know that depending upon the group of persons with lived and living experience, it's both, mostly living, depending upon the group of individuals that you're drawing from, the compensation that you offer may have to be really thought out because some of the individuals taking those positions may already have benefits they've earned. And the compensation that's going to be offered could interfere with those benefits. So really, the leaders of these lived experience groups have a huge burden, but it's such a gift to invite persons with lived experiences in because being able to get the actual information of actually what's driving your data. And get from the horse's mouth what potential solutions the community sees or the community wants. I think is so valuable. And so important. Compensation is the biggest one that I would think that needs to be addressed. Or just talked about. And if you can't compensate your individuals, maybe in. Financial ways, like as was done in our way, you know, inviting us to symposiums, involving us, just the involvement of individuals is really, really huge. So if you can't do involvement, then what about offering educational opportunities or continued invitations to ongoing yearly groups? I think there's ways to continue to involve your people and to really create ongoing change with these lived experience groups.
Deitre - 00:14:36:
Thank you, Megan. I think that's so important what you shared about it's not just a one-time thing that someone comes and shares their voice one time. Part of Race for Equity's platform that we like to build is for people with living experiences and lived experiences to be able to not just come for, as you well know, not just come for one time, but to build relationship over time. But also, ideally, that that experience would lead to full time work or other opportunities. Right. And so what I hear you saying is that if the Maternal Health Task Force can offer these opportunities to people with living experiences, that that is also a type of compensation and that is also a type of recognition. If you can speak at a symposium or go to a professional development or just also include some type of other benefits of being a lived experience member on the Maternal Health Task Force. Maya or Courtney, anything you want to add to that about how the Maternal Health Task Force can keep people involved longer term?
Megan - 00:15:44:
Yeah, I agree with Megan. The one-offs, I think, are very challenging. We want to see the change and impact. And so if you just expect for it to happen within a very short period of time, then you're never going to see what is going to occur. You won't see the long-term effects behind it. And so I love the idea about continuing education. That's very difficult for a lot of people with lived experiences trying to balance household and work. But if there's flexibility to continue to learn and to be able to build upon your professional skills, I think that's always a great skill set. I love Megan's idea about just kind of thinking about compensation, how that does impact individuals that are receiving benefits. Every state is different. And so making sure, again, that you have a little bit of flexibility in what your compensation plan is. And then... You know, just make, what is the end game? Like, what is the long-term effect? Because you don't want people to be a part of these lived experience groups and then find out five years later that they're struggling or that they're still, you know, dealing with the similar challenges that they were before. So access to resources such as mental health support, health insurance, like any of these things, I think would definitely be a way that reshapes how we see and value people, versus just kind of being like, oh, I have a project or incentive that I need to do. You really want to make sure that people are thriving along with the development of this work as well.
Deitre - 00:17:19:
Thank you. So there's so much opportunity that I see, not only. Not only what has happened over the last five years and the opportunities that you've shared, but I also see opportunities like expanding my own thinking about what you've shared today about when someone comes onto a Maternal Health Task Force, what might be offered to them? Because people frequently say, well, we don't have a line item for that in our budget. We don't have that in our budget, but you've just listed multiple ways that a Maternal Health Task Force can engage people longer term and not just for a one-time thing and that they feel recognized and valued. So thank you for that. I'd like to now invite you to think back on over the last five years since the Lived Experience Advisory Group first started and with the maternal telehealth access project, and then shifted into a different unique format for the Maternal Health Learning and Innovation Center, where you were helping with different specific technical assistance, kind of project as a lived experience member. And now the next conversation that we're inviting you to in this series is about a Maternal Health Task Force. So you've grown a lot in the last five years and so have the maternal health innovation sites have grown over the last five years. So can you tell us a little bit about how you're building up on what you've experienced as a lived experience advisory group member?
Maya - 00:18:55:
I entered as a mom that had just given birth during the pandemic in August of 2020. And I was unsure and I was scared. And I wasn't sure if I was going to make it through without postpartum. And I wasn't sure what... What this lived experience group and maternal telehealth access project was. And I dared to throw myself into it. And through the professional development and learning to believe in myself, I've went and got myself certified to be a group peer support facilitator. So I'm working that as another job now. And because I've grown to believe in myself and I've learned so much through this process. I really believe that there's a huge harm reduction gap that a lot of moms and others are falling through. So I've went ahead and started my own Mothers of Moderation peer support group that meets weekly. And I'm currently taking business classes to try to create that into a business and actually make a nonprofit and employ other moms as peer supporters.
Deitre - 00:20:04:
Wow.
Megan - 00:20:05:
We're so proud of you, girl.
Courtnie - 00:20:09:
I'm in tears over here.
Maya - 00:20:13:
Thank you.
Deitre - 00:20:13:
Wow. I'm getting goosebumps. So that is thrilling.
Maya - 00:20:19:
You all got me here.
Megan - 00:20:21:
Megan, so proud of you. I'm like, why isn't this Zoom? Like, why can't we see you hearts? Like, I want to see you some hearts right now. They can't. Yeah, we're going to have to do it with the hands.
Maya - 00:20:36:
Let's talk about you ladies, because you're also doing some fabulous work that is far beyond. The impact that you ladies can make. It's going to be amazing. And I can't even see how far that's going to be. So let's hear about what you're doing.
Megan - 00:20:52:
Okay, Megan. I love it. I love it. I can't go. So, just like you guys, I... Dealing with, I think I was dealing with my fourth child at that time, who was a toddler, didn't quite know what was going on, but I also was returning back to work and got let go after three weeks, coming back off maternity leave. Dealing with the pandemic and the loss of my grandmother, which was like my only maternal support that was left. So it was a big, big challenge trying to figure out how we were going to make ends meet. So Megan, same with you, no insurance, no nothing. Had a crazy dream to impact my community in some type of way. And I started a nonprofit like a crazy person. And it was a challenge and a struggle because, like I said, this group was the first group that I felt like lived experiences mattered. I didn't feel like that in my own community. It took five years to get to the point where my organization is now. So this group was definitely a refuge. We provided tons of perinatal mutual aid support throughout the pandemic and were in the hospitals birthing with people. I was leaving my family for hours to be with other people giving birth and protecting and advocating. For other people's family. And I would feel so lonely at times. And so this group was definitely that space for me. And so. MAAME, we value the lived experiences of the people that we serve. We don't create programming unless community says they want that. Institutions now value that when they see us. I hate that it took this long for them to get it, but they see it. So now my organization is in nine counties across the state of North Carolina. We are co-investigators with UNC School of Medicine for the Cure for Mom project, in which we are providing doula support to improve maternal health outcomes for Black women. But my organization as a whole, we serve Black and Brown birthing people and those folks who have been historically excluded from services. And we do a lot of that with partnering with community. My organization would not have made it as of last year if it wasn't for community members and other community groups to be sustainable without those lived experiences. So I'm now, if I have another baby, also. After the pandemic. So I'm about to have a two year old in November. And so it's been a lot of growth and personal development and regaining confidence in myself and just kind of knowing that everything is okay and thankful for this sisterhood that we have had. And Deitre and I have been in other spaces outside of this project that we didn't know that we were going to be on. So, you know, it's been a beautiful journey and I'm very appreciative for this space.
Courtnie - 00:24:07:
Well, I came to the group having just had a baby deep in postpartum depression and anxiety, really didn't see the light at the time. And I won't say that it hasn't been that way since then. Still have my moments, but still advocating for mothers that look like me to know that they're not by themselves, for them to have better screening processes. And then I, through all of this, went through a volunteer doula training, went through and got a certification for a CHW, joined the staff at Reaching Our Sisters Everywhere, have presented, have been on podcasts sharing my lived experience. And at the end of Black Breastfeeding Week, got awarded a scholarship to go back to school to become an IBCLC and really get to support moms with their breastfeeding experience.
Deitre - 00:25:05:
So as we close out this podcast, I just want to share, first of all, deep gratitude to each of you and to those who are not here today that are also part of the Lived Experience Advisory Group over the last five years. But I also want to speak to the people who are listening, who are our audience, the Maternal Health Task Force members, co-chairs, those who may not have a Maternal Health Task Force yet. You don't have to have a Maternal Health Task Force to start a Lived Experience Advisory Group. As you can see, everyone on this group came together as a Lived Experience Advisory Group. So you can start a Lived Experience Advisory Group and just bring folks together to talk about and to hear with us. Facilitated conversations that are authentic to hear from people about what is important to them, about the decisions that are impacting them. You might also have a Maternal Health Task Force, and you heard lots of things throughout our series about how to... Onboard, engage, and sustain people. Who are part of the living experience that you want to hear from. Lots of different ways that you can onboard and just make those individuals feel valued and supported and cared for, for their voice over time and for their commitment. And you heard the commitment today from Megan, Maya, and Courtney representing the Lived Experience Advisory Group. Finally, I want to say that there was, Courtney mentioned an award that she received, but I want to mention Race for Equity gave each of these beautiful people the Gloria J. Allen Lived Experience Impact Award for the phenomenal work you've done as lived experience members. And I just want to thank you.
Megan - 00:26:55:
Mine is on my desk. I can't reach it.
Deitre - 00:26:59:
Thank you for what you've done over the past five years. And this podcast goes into posterity. Your legacy is known. You were one of the first lived experience advisory groups. You're RACE for Equity's first Lived Experience Advisory Group. And also for the Maternal Health Learning and Innovation Center on behalf of HRSA and everyone whose lives you've touched. I thank you. And it's not goodbye. It's not farewell. It's au revoir. See you next time. All right. All right. So we're going to close out this podcast. And a great thank you again. I'm Deitre Epps. I'm with RACE for Equity on behalf of the Maternal Health Learning and Innovation Center and all those who care about women and birthing people. We wish you well and take care.