When Lived Experience LeadsHow Imagine Pediatrics Is Redesigning Healthcare With Families

When Experience Changes Everything

Jennifer Uscanga thought she understood healthcare.

Before becoming a caregiver, she had studied nursing and believed what many healthcare professionals believe—that when families left the hospital, they had the information and support they needed to care for their children. But everything changed when healthcare became deeply personal.

Jennifer's youngest daughter, Malia, was born with a rare genetic condition that required intensive medical care at home. Later, her oldest child was diagnosed with brain cancer. Overnight, healthcare was no longer something she understood from the clinical side—it became something she lived every hour of every day.

As she navigated appointments, therapies, and the day-to-day realities of caring for medically complex children, Jennifer began to see what many outside that world never do. Families were repeatedly asked to retell years of painful medical history. Systems were often designed around organizational processes rather than the realities of family life. Even the most compassionate professionals sometimes struggled to understand what happened after families left the clinic.

"It doesn't have to be this difficult," Jennifer remembers thinking. "People just don't know what this experience looks like."

Instead of walking away from healthcare, Jennifer leaned further into it. She became an advocate for families navigating medical complexity, determined to help healthcare organizations see the world through the eyes of the people they served. Eventually, Imagine Pediatrics found her—not because she was looking for a new opportunity, but because they recognized something invaluable.

Jennifer's lived experience wasn't simply a story to be shared. It was expertise that could help build better care.

Beyond a Seat at the Table

Imagine Pediatrics wanted to create a Patient Family Advisory Council (PFAC), but they weren't interested in creating another committee where families simply reacted to decisions that had already been made. They wanted caregivers to help shape those decisions from the very beginning, and they asked Jennifer to build it.

Having served on other advisory councils, Jennifer knew firsthand what she didn't want to recreate. Too often, families were invited to weigh in on waiting room paint colors or furniture selections—important details, perhaps, but not the decisions that truly shaped care.

Families didn't need another opportunity to choose chair colors. They needed a meaningful voice in the systems affecting their children's lives every day.

Together, Jennifer and Imagine Pediatrics built something different.

Today, caregivers don't simply offer feedback. They help influence decisions around technology, operational workflows, clinical processes, employee training, and the future direction of the organization. Their perspectives aren't viewed as anecdotal—they're treated as an essential part of designing better care.

As Amanda Beach, Vice President of Strategic Initiatives, explains, the philosophy is simple:

"We build care with families—not for families."

Building Trust Before Building Solutions

That kind of partnership didn't happen overnight.

Jennifer understood that if families were going to speak honestly about some of the hardest experiences of their lives, they first needed to know they were entering a space built on trust. She intentionally recruited fellow caregivers because she believed caregivers trust other caregivers. She established expectations that encouraged staff to meet families first as people—not titles or credentials—and created an environment where honesty was welcomed rather than feared.

Most importantly, families saw their feedback turn into action.

Rather than collecting ideas and filing them away, Imagine Pediatrics consistently implemented what they learned and brought those changes back to caregivers for additional input. Over time, families watched their experiences shape real decisions, reinforcing that their voices truly mattered.

Listening That Leads to Change

One of the earliest examples came during the onboarding process.

Like many healthcare organizations, Imagine Pediatrics initially planned lengthy onboarding appointments where caregivers would once again walk through their child's entire medical history. Families explained what those appointments actually felt like—not simply time-consuming, but emotionally exhausting. Every new provider meant reopening some of the hardest chapters of their lives, often without knowing whether anyone would meaningfully use the information they were sharing.

Because Imagine Pediatrics leaders listened, the onboarding experience was redesigned around what families actually needed, building trust and engagement between the caregiver and the care team.

That willingness to listen continued to shape the organization in practical ways. Caregivers helped redesign parts of the enrollment process after explaining that parents caring for medically complex children often don't answer unfamiliar phone numbers or have time during traditional business hours to navigate healthcare. Technology features evolved because families identified barriers developers hadn't known about. Policies changed because leaders were willing to begin each conversation with a simple but powerful question for the caregiver:

"If you had a magic wand, what would care look like?"

The Wisdom That Changes Systems

At Think Tank, we believe the people closest to a problem are often closest to its solution.

Imagine Pediatrics demonstrates what can happen when organizations move beyond collecting feedback and begin sharing decision-making power. Jennifer's lived experience wasn't something the organization wanted represented only in a brochure—it became an integral part of how decisions were made, ultimately creating better experiences for families and stronger systems of care.

For organizations hoping to build similar partnerships, Jennifer offers one piece of advice:

"You're going to have to get uncomfortable to get comfortable."

Real partnership requires leaders to let go of assumptions, welcome honest feedback, and remain willing to rethink systems they once believed were working.

Amanda echoes that same conviction:

"Until you truly, genuinely understand your customer, you cannot meaningfully serve them."

Achieving that level of understanding needs to go beyond a survey or a focus group. It’s achieved by recognizing lived experience as expertise—and inviting the people closest to the challenges to help shape the solutions.

*******************************************************************************

Imagine Pediatrics provides 24/7 virtual and in-home pediatric care for children with special healthcare needs, integrating medical, behavioral, and social care to support the whole family.

Earlier this year, members of the Imagine Pediatrics team participated in Think Tank's Virtual Cost of Poverty Experience (VCOPE)—an immersive simulation designed to help participants better understand the realities of poverty through the eyes of individuals with lived experience. Their commitment to learning from the people they serve is reflected not only in experiences like VCOPE, but also in the way they have embedded caregiver voices into the heart of their organization through their Patient Family Advisory Council (PFAC).

Interested in learning more? Explore Imagine Pediatrics' Patient Family Advisory Council (PFAC) or learn more about the Virtual Cost of Poverty Experience (VCOPE) by visiting the links below.