Nicole: 0:26

Hello and welcome to today's episode from The Power of MoMMA's Voices. My name's Nicole Purnell, and I'm the program Director for MoMMA's Voices. One of our initiatives is our lived experience integration training. This program offers guidance on how to effectively build a patient engagement culture and perform work that integrates patients and those lived experience into different areas of QI work. We are honored to have the Colorado Perinatal Care Quality Collaborative on one of our first sessions, highlighting how this engagement can work. We hope that this gives our PFPs more information about the types of opportunities available in their state and help in understanding ways organizations can also include patients in the QI work. I'm so excited to introduce our guest today, Brace Gibson as CPCQC's, director of Policy and Engagement Brace serves as a liaison between the Colorado Legislature, state agencies, and lived experience experts around maternal infant health policy issues. Brace is informed by her own experience as a former teen parent who suffered from a severe case of preeclampsia that was initially misdiagnosed and resulted in the emergency C-section at 28 weeks gestation and left her navigating her daughter's three month NICU as an adolescent. Brace's subsequent experienced postpartum PTSD and OCD. She also fulfills the role of patient advocate by leading the family integration to restore arts program or FIRST and provides leadership and support to the Colorado Maternal Mental Health collaborative. Brace earned her Juris Doctor from Indiana University Maer School of Law with the focus on public interest, law and policy. Thank you so much for being here today, Brace. If you don't mind, could you share with us a little bit more about your personal birth experience and how that led you to your professional

Brace: 2:10

roles? Absolutely. And first, thank you, Nicole, for inviting me to be featured on the podcast. As you mentioned, I share an experience similar to that of many other women having suffered from severe preeclampsia during my first pregnancy. And that experience was of course then compounded by some exceptional life circumstances and that I was 16 years old. At the time that I got pregnant, I was also poor and on public health insurance with a limited support system. As a whole, the experience of having a child with complex health needs in such a traumatic way and of navigating the healthcare system as somewhat of a child myself yet miraculously coming out on the other end having survived those experiences with my daughter, led me to initially pursue a career in medicine. So I went on to undergrad as a pre-med major. Learned a lot more about our healthcare system and other social systems that impact not just the opportunities that only some people are given to achieve health and wellness, but also those that impact the care and treatment that other people receive when they aren't well. Ultimately then I decided to attend law school instead. And while I had always been driven by my lived experience and felt that I had to be connected to my professional work through them, it wasn't until I stepped into my role at CPCQC that I really felt comfortable leading in a more open and public-facing way with my lived experience first. And I have to say that the connections that I've been able to form with other birthing people, parents, and advocates since doing so have just been amazing. So I now oversee CPCQC's patient and community engagement work, as well as its policy and advocacy work. And I'm involved in improving family engagement in Colorado's NICU through CPCQC's defined program. I also hold a couple of volunteer roles as an advocate for teen parents specifically.

Nicole: 4:16

That's so great to hear. I think that the age factor too. It's a space that we, we don't think of enough when we talk about diversity and making sure to include young parents in quality improvement projects as well. Because they have very different experience. And I've heard this before and I've heard it over and over again, but it's, it's something that we miss when we're thinking of diversity. Thank you again so much for sharing your story and just how that, there's a lot of people that they have their personal experience and they feel led to wanna improve that for the next person and to improve outcomes for others. And so that tends to lead them into professional interests and roles. And so it's so interesting to see kind of how it's come full circle for you and you're able to really be such a great liaison to those in the state. Can you share a little bit more about some of the CPCQC's quality initiatives. Absolutely.

Brace: 5:10

In addition to serving as the backbone organization for the Colorado Maternal Mental Health Collaborative and implementing a patient navigation pilot program for Colorado's rural counties to address maternal behavioral health needs, through our impact behavioral health initiative, CPCQC currently has four active QI programs that include efforts to improve outcomes for patients to experience perinatal substance use and reduce associated stigma. We also have a QI project to reduce primary cesarean rates, and again, one to improve NICU family engagement. But of course, the work that I lead and am most excited about is our family integration to restore trust program, otherwise known as FIRST. The premise of first is really to integrate, lived experience, expertise into all of our quality improvement initiatives and every level of our organization. So it's a two phase program through which we provide participants with patient family partner certification training through MoMMA's Voices, of course. And then we empower our FIRST program champions. To choose how they want to be involved in our organization, and that can be through any one of our QI programs. They can also choose to guide the strategic direction and vision of the organization by serving on our board of directors. They may choose to offer direct peer support. Or they may choose to be involved in our policy and advocacy or other maternal mental health initiatives. Through this program, we really have put into practice the idea that meaningful improvements in perinatal health outcomes aren't possible unless initiatives that are developed and overseen by the pregnant and postpartum people and families from communities whose health we strive to improve, and we help to facilitate that meaningful engagement by empowering community members and patients to use their lived experiences in ways that they're most passionate about and can help have the most impact.

7:19

One of the things that I kind of wanted to dive into a little bit more is the FIRST program, and can you share a little bit about what you did to really launch this program? I know you did, you were really boots on the ground to make this successful. Yeah, absolutely. Essentially, I figured out pretty early on, that we were gonna be most successful in recruitment and in getting the, the program off the ground if we went into community itself. Right. And like I said, so I led with my lived experience first. That's really how I connected with individuals. And I met one-on-one with everyone who expressed interest in the program. So we just sat down, established, our connection through our lived experience first, and then I led with how I then used my own lived experience to get involved in advocacy and QI work. And helped the participants who were interested in the FIRST program or the people who are interested in the FIRST program understand the importance of doing this work, the impact it can have, and also in helping them to explore ways in which they could use their lived experience to really drive change. Did you meet with community-based organizations or was it just like one-on-one individuals? How did you show up? Both actually. So we developed an interest form for the FIRST program specifically that we disseminated broadly. I also visited community-based organizations, community support offices. So I went to WIC, we went to public libraries and then we had established partnerships with community-based organizations. And so we tried to utilize a trusted-messenger approach in that way. So for communities that we perhaps didn't have an established relationship with already we were able then to connect with the community organizations that we had developed partnerships with and got the word out about FIRST in that. Excellent. And then you have the first program also includes an application. Is it an application or is it just an interest form? It's an interest form. So we were really intentional about making it an application, allowing folks to self-disclose whatever information they wanted to in the form of an interest form as a first step. And then I contacted everyone individually who filled out an interest form and again, was able to connect on a more human level around our experiences and help to guide them in understanding how they would be helpful to the program or impactful. And how the program would then be also be beneficial to them. So you're creating a very safe space for them to share what they're comfortable with sharing from the very start and you're building that trust from the very beginning with them. And I love hearing how you're able to do that and what you're doing. Absolutely. One of the FIRST program aims is to ensure that families are provided with a safe environment in which to engage productively with healthcare providers. So we try to integrate that aim throughout every step of the FIRST program, from recruitment to actually engaging with these folks and integrating them into our QI initiatives.

Brace: 10:58

I

Nicole: 10:58

love how you all have really embraced the FIRST program. And, congratulations and applause and, to your credit because I know you put so much work into creating those relationships as well with, your FIRST team. So what was it like? You've completed two of our community of learning projects. You've also been involved with us for, for many years, even before Colorado started sending their patients through our PFP training. You yourself went through it. And so you've just had a lot of exposure to the things that we do. But what was it like to attend our community of learning sessions?

Brace: 11:36

The community of learning sessions were incredibly rewarding. Sharing space with other lived experience experts and just having opportunities to learn with and from other PQCs, I found to be invaluable. We're really looking forward to participating in the forthcoming session, to continue that type of knowledge sharing and to have access to tools and to partnerships that will allow us to continuously improve upon the work that we're doing.

Nicole: 12:07

So some of the things that we talk about in these sessions, we really wanted to make sure that we had a lot of time for that peer-to-peer and learning and sharing that is so valuable with the PQCs because everybody does it a little bit different and we have so many lessons learned from each other. But one of those things that we wanted to talk about was hardships. So what are some of the hardships that you've overcome and challenges that you've overcome? Experience to include patients with loved experie. Well,

Brace: 12:34

when we were initially launching the first program recruitment was certainly a challenge. We were also cautious about doing this work in a way that was meaningful, not re-traumatizing to patients, and didn't in any way perpetuate the disconnect between patients and providers. That we were effectively trying to address, right? So it's certainly been and continues to be a learning process as we do this work, but I think that leading with my own lived experience, as you mentioned, certainly helped to overcome some of those initial challenges. And a priority of this work is building trusted relationships and connections with communities, and that takes time. It's a genuine effort. It takes hard conversations, and it takes a willingness to learn and constantly evolve. Another challenge is sustaining engagement. Recognizing that like myself, some of the lived experience experts who we work with have had or are presently experiencing some exceptional life circumstances or particular adversities that not only make it challenging for them to be consistently engaged in the work but may also heighten the emotional burden that is already a part of doing work that is deeply personal. And I think that for PQCs struggling to maintain patient engagement, being understanding and persistent are perhaps the first steps to overcoming that challenge. And then also providing patients with the resources they need for engagement is important, including compensation for their time and expertise, as well as, again, just making sure that the partnership is mutually beneficial. And empowering them to decide what meaningful engagement really looks like to them is also important.

Nicole: 14:27

It's so much about building those relationships as well and building that connection. And, and I often say at times it feels like we've lost sight of humanity in the maternal health space in maternal healthcare. And we can bring that back, whether it is at bedside or in meetings and working on research projects. There is a face behind the data and there's a face behind those experiences as well. What are some successes that you have seen from having patients help with this kind of work?

Brace: 15:00

I think the impact by far, I'm never not amazed by the impact that lived experience integration has on patients that it has on family members, providers, and care teams. I think oftentimes this work is a healing journey for everyone involved. I personally find it a privilege to witness the true change in practice behaviors and patient experiences and outcomes that this work helps to facilitate. We're doing the work of addressing sources of care disparities through partnerships of care, and it's absolutely evident now that the role of the patient advocate can be leveraged to build alliances and facilitate shifts in practice and in culture.

Nicole: 15:49

I think you guys have done a great job as well because of your support of your patients that you work with. It's become almost a launching pad for them to have other opportunities as well. I know there have been several times that we have reached out and utilized maybe some of your patient family partners for a different project. I think we had one that worked on a project for IHI. And so just being able to utilize that and to leverage that can be such a benefit to patients as well that most people don't even realize is available. So where do you see the future of CPCQC going?

Brace: 16:24

Well, I think you know, we strive to continue this work of creating a collaborative that's made up of diverse stakeholders. That includes patients, providers, families, community members, advocates, you name it. And at CPCQC we see ourselves as the bridge between the clinical and community settings. Ultimately facilitating the integration of those two worlds and being a convener across those sectors. That's how we improve care and outcomes for everyone. I think we also see ourselves as continuing to strengthen that role as we look to our future.

Nicole: 17:05

Well, I, I just applaud you guys for all that you're doing including patients and their voices and these projects because it's still a challenge for a lot of folks and you guys are definitely leading the way and have figured out part of the magic to it. So I love to hear that. What would you, like patients with lived experience to know about PQCs in general and how they can get involved in their state.

Brace: 17:29

First, thank you for that, for that recognition, and it's my belief that PQCs are well positioned to amplify patient voices and to facilitate more equitable partnerships between patients and clinicians to ultimately improve care and outcomes. That's our primary aim, right? And there's so much momentum right now in actively recognizing the importance of ensuring that families are active members of care teams. And collaborative partners in quality improvement work. So I think it's our time to, to leverage that momentum. And one of the most effective ways, I believe, to address inequities in care is to make sure that efforts are community led and that providers possess skills and experience to build relationships with families and communities, and to understand those historical barriers to establishing trusted relationships. We can't do that work, however, without the patients themselves. So it's important to get involved with your state's PQC. And if you're in Colorado, you can connect with us and our work through cpcqc.org or by reaching out to me directly at bGibson@cpcqc.org.

Nicole: 18:49

Well, thank you so much Brace for being here today. It's been a fantastic interview and I am just so excited to have you all as the first PQC that we've gotten a chance to highlight in this series of podcasts because you are just doing amazing things and we are here to cheer you on.

Brace: 19:06

Thank you so much for having me today.