The morning sessions of the final day of The RISE Healthy Communities Summit focused on a powerful idea: the people closest to the problem often hold the clearest path forward. The sessions explored how health care can move beyond intention and into impact by centering real human experiences.
Stories as data: Using lived experience to catalyze innovation
Erica Olenski, board certified patient advocate and founding executive director of August’s Artists, delivered a deeply moving keynote that reframed how organizations should think abou innovation.
Through the story of her son August, Olenski walked attendees through years of navigating complex medical systems. What began as a sudden illness in infancy led to brain surgery, cancer diagnoses, a stroke, multiple treatments, and ultimately, a difficult, years-long journey that ended with his death in June 2025.
Her story was not shared for sympathy. It was shared as data. “Lived experience isn’t a bonus. It’s the blueprint,” she said.
Olenski introduced the Monarch Model, a framework that places lived experience at the center of innovation, surrounded by systems, technology, and access. Instead of designing solutions based on assumptions, the model calls for starting with real stories, real barriers, and real needs.
She challenged attendees to rethink what innovation looks like. It is not limited to new technology or advanced systems. Often, the most valuable insights come from navigating complexity firsthand.
Her experience highlighted how overwhelming care systems can become, especially for caregivers managing medications, appointments, and critical decisions in real time. Even small moments, like organizing medications in a cooler during travel, became part of a larger survival system built out of necessity.
She also emphasized the importance of trauma-informed care, explaining that true care must support safety, processing, and long-term integration, not just clinical outcomes.
At its core, her message was clear. Stories do more than connect people. They reveal what systems miss.
Avoiding unintentional inequity: Rules, reality, and the patient in between
Koby Mitchell, director of utilization management at Simpra Advantage Plan, brought a practical and honest perspective to how inequities show up in everyday care delivery.
Her session focused on a difficult truth. In many cases, the system is technically working. Coverage is approved. Services are available. And yet, patients still cannot access the care they need.
Mitchell shared real-world scenarios that illustrated this gap. One patient had insurance coverage for necessary heart medication but could not afford the copay. In contrast, Mitchell reflected on her own experience accessing care for a hysterectomy, where financial capacity made all the difference.
There was no denial, no exclusion, and no clear point of failure. Just a system that did not account for real-life constraints.
This disconnect calls for a key shift in thinking. Instead of asking whether resources exist, we need to ask whether patients can realistically use them.
Mitchell encouraged attendees to design for capacity, not just access. That means considering whether a patient can afford care, physically reach it, navigate the process, and sustain it over time. It also requires understanding the role of family, community, and care teams in making a plan successful.
She shared examples that made these challenges tangible. A prescription was sent to a pharmacy 35 miles away for a patient without transportation. A hospital discharge plan that relied on telehealth technology, which an elderly patient did not have. These are not edge cases. They are everyday realities.
Her call to action encouraged attendees to rethink how systems are built and evaluated. Policies should be tested in real-world conditions, administrative pathways should be simplified, and programs should be designed with the assumption that barriers exist.