The final session at RISE National 2026 delivered one of the conference’s most emotional and thought provoking conversations, bringing together three patient advocates for an honest look at what members truly need from health plans today.
Moderated by Dr. Laura Cooley, editor in chief of the Journal of Patient Experience, the panel offered firsthand insights on communication failures, broken trust, caregiver burden, and how AI can support but not replace human connection.
The 45 minute discussion wove personal storytelling with actionable strategies, challenging payers and providers to
rethink how they design communication, care continuity, and support for families navigating complex conditions.
A wake up call on communication breakdowns
Panelists shared raw examples of system failures—unexpected provider departures, automated messages sent in moments of grief, and lack of transition planning—that erode patient trust.
Naomi Williams described losing two long‑time specialists for her medically fragile son without warning: “
We lost a neurologist and a palliative care physician without any notice and no handover… that really shook my trust in my health care system.”
For Erica Odensky, a mistimed automated text message from her health plan—months after her son died—highlighted the dangers of disconnected systems: “They knew what happened… but there was a breakdown between clinical systems and marketing communications… messages like that really cause harm.”
These moments, they emphasized, aren’t minor glitches—they are deeply destabilizing for patients and families whose lives depend on coordinated care.
Trust matters most
Trust emerged as the central theme. The panelists described how it is earned through validation, listening, prepared communication, and acknowledgment of caregiver labor.
Odensky explained how trust collapses when caregivers’ unseen work is ignored: “Trust erodes when the system denies the reality that caregivers are bridging gaps… spending energy to make better outcomes happen.”
Williams countered with a positive example: a palliative care physician who met her anger and exhaustion with compassion: “She gave space for me to be vulnerable… she saw past my frustration. We have a relationship now.”
Pamela Corcoran emphasized the foundational questions she wishes every provider and system designer would ask:
“What do you need today to increase your wellness? How can we work together? “
Caregivers: The “hidden glue” of the health care system
Caregivers, the panel agreed, are essential but unmeasured contributors to patient outcomes.
“We are what we measure… and historically we’ve measured outcomes only for the patient,” Odensky said. “But caregivers are closing gaps in clinical and administrative care. If the patient survives but the caregiver collapses, were we really successful?”
She argued that plans must measure family well‑being—not just individual member outcomes—to truly achieve value.
Key takeaways
Their advice for health plans and providers:
Treat every communication as part of care delivery: From appointment reminders to automated texts, every touchpoint can heal or harm.
Proactively inform families about what’s ahead: Williams urged payers to use data to forecast likely complications and common conditions so caregivers can prepare rather than be blindsided.
Preserve patient and caregiver autonomy “Nobody wants better outcomes more than the patient… we must preserve the human’s ability to make decisions,” Odensky said.
Use AI to humanize—not dehumanize—patient interactionsL Dr. Cooley challenged attendees to imagine digital tools that ask genuinely human questions such as, “What do you need today?”
Build pathways that reduce avoidable ER use: Teach families how to handle home interventions when appropriate—don’t force ER visits due to lack of timely education.