“If our ultimate goal is to improve patient outcomes and to really impact lives, then when lived experience isn’t at the table, we are missing an entire perspective of the people we are trying to support with our work.” — Sydney Comstock, Program Manager, CPCQC

There is a concept embedded in quality improvement work that is easy to say and harder to put into practice: that the people most affected by a problem are also the most essential to solving it. In perinatal health, this means that the birthing person is not just a recipient of care, they are at the center of it.

At CPCQC, this belief is shaping the focus of our work. Data alone cannot tell us what it feels like to be in a hospital bed making decisions about your own body, or to be a new parent whose mental health needs go unrecognized by the clinical team in the room. These perspectives belong in the room where decisions are made.

Introducing FIRST: Family Integration to Restore Trust

FIRST was established in 2021 on the premise that people with lived experience with the perinatal health system are not just beneficiaries of quality improvement work, but qualified, essential partners in it. The vision behind FIRST is to create a structured, supportive pathway for people with lived experience to engage meaningfully in CPCQC’s work as ongoing collaborators who help shape the direction of our programs.

FIRST participants take the Patient Family Partner training offered by MoMMA’s Voices, a close partner with CPCQC since FIRST’s inception. The training is designed to help PQCs and the people we serve work more effectively together by equipping participants with skills in quality improvement, storytelling, and community involvement. By building a shared foundation between patients and providers, we can work towards a foundation of more collaborative, patient-partnered care. “[MoMMA’s Voices] basically teach you how to go from… I had these experiences… to being collaborative,” said one participant. “It’s really good therapy for yourself, but then good to learn how to talk to professionals.” Once FIRST participants take the MoMMA’s Voices training, they are matched with one of CPCQC’s programs (SPARK, SOAR, Turning the Tide, NEST, IMPACT BH) that align with their interests and lived experience. FIRST participants inform programs by serving on steering committees, reviewing patient-facing materials and provider scripts, sharing their stories in monthly cohort meetings or at educational trainings, and so much more.

The FIRST community is made up of people who have moved through the perinatal health system and carry insights that no literature review, clinical training, or data dashboard can replicate. Participants come with different backgrounds, stories, and reasons for wanting to partner with CPCQC in efforts to improve infant and maternal outcomes in Colorado. “My husband was like, we just had a traumatic event, don’t stress your body out” one participant shared, “but that was making it worse for me because [advocacy] is something I wanted to do.” What FIRST participants share is a commitment to making the system better for those who go through the process after them. 

FIRST in Action: A Conversation with Sydney Comstock

Sydney Comstock has been a program manager at CPCQC since 2023, and has worked directly with FIRST participants from the start. Her program, SOAR (Supporting Vaginal Delivery for Low-Risk Mothers), focuses on helping hospitals lower their first-time, low risk cesarean section rates through evidence-based care. Inherently, this has become a very clinical program. And that, she will tell you, is exactly why lived experience is so essential to it.

“For someone running a very clinically-focused program,” she shared, “I rely on people with lived experience to make sure the importance of patient perspective is getting across to nurses, providers, and people who are interacting with patients everyday.” Sydney admiringly notes that one FIRST participant she has worked with on SOAR’s steering committee has reviewed every resource the team has produced. Sydney appreciates what this partnership has kept at the center of her mind. “Having people with lived experience there,” she said, “is a reminder that it [is] the first time for everybody at this birth. I think that is my favorite thing to be reminded of constantly.” 

Sydney’s statement highlights a profound duality. For a provider or a quality improvement professional, a birth might be the hundredth they are attending or reviewing. For the birthing person, this may be their first birth, first time in a labor room, or first time in a surgical suite. Whether or not that is the case, giving birth is a transformative experience. This transformation can best be described as matrescence, a term coined by Dr. Dana Raphael, a medical anthropologist, to describe “the process of becoming a mother – a developmental passage where a woman transitions, through pre-conception, pregnancy and birth, surrogacy, or adoption to the postnatal period and beyond.” This asymmetry in giving birth—what may be routine for one person is once-in-a-lifetime for another—is something that only a person with lived experience can consistently and credibly bring back into the room.

Sydney is clear-eyed about what is missing when that voice is absent. “When we think about the birthing team, it is really supposed to be the patient or client running the show. I think if lived experience isn’t there, we don’t have that captain of the ship.” 

What We Are Learning, and Where We Are Headed

There isn’t a clear-cut template to integrating lived experience in perinatal health. Listening to our FIRST participants and to our own staff has given us a chance to improve lived experience integration within CPCQC. Some parts of this are logistical, such as streamlining onboarding and creating channels for ongoing communication. But an equally important part of this is follow-through. Sydney put it plainly: “You never want to include somebody just for a panel and then never talk to them again. There has to be a moment to circle back and share with them the importance of the work they have done. I could still be better at this, [and] it is still on my mind.” This kind of closing of the loop is something we are building more intentionally into every engagement. 

These reflections are not unique to CPCQC. Earlier this year, the National Network of Perinatal Quality Collaboratives (NNPQC) hosted a patient and family engagement webinar, providing the opportunity for PQCs to connect with each other to discuss lived experience integration in our organizations. We used words such as striving, building, trial and error to describe these efforts, and these conversations made it clear that there is always more we can be doing to engage and integrate lived experience perspectives in perinatal health. And we are beginning to create systems to measure this integration. The field is collectively asking: how do we move from bolting lived experience onto existing work, to baking it in from the beginning? How do we shift from QI programs that consult people with lived experience to programs that are co-created with them? 

For CPCQC, the next chapter of FIRST is about deepening that integration. Sydney described her own excitement about the year ahead: “I’m really really excited to see how the integration works between our quality improvement programming and FIRST. I’m really excited for it to become intertwined, that it won’t even be a question or conversation, that we will just be bringing in lived experience from here on out in everything that we do.” This vision is the one we are collectively building toward at CPCQC. 

Making It Possible: A Grateful Word About Early Milestones

None of this work happens without investment. We are deeply grateful to Early Milestones Colorado for enabling CPCQC to continue investing in FIRST. 

Early Milestones Colorado’s Impact on Equity Initiative enabled CPCQC to continue co-developing the FIRST program in partnership with participants and community-based organizations across Colorado. Together, we developed updated training and onboarding materials, expanded the program’s capacity, learned about best practices, and developed a new evaluation plan to ensure continued program improvement. 

When a funder invests in centering lived experience, it signals to the broader perinatal health community that the perspectives of those most affected by our health system are worth investing in. Thank you to Early Milestones for believing in this vision alongside us.

An Invitation

If you are a partner, provider, fellow PQC, or someone working in perinatal health who wants to learn more about FIRST or think together about how lived experience integration can strengthen your own work, we want to hear from you! Check out our FIRST landing page, and if you or someone you know may be interested in being part of the program, here is our interest form.