When I discuss Healing the Sick Care System: Why People Matter with audiences, I expect nods of recognition acknowledging the mess and the hopelessness so many experience within today’s health system. I anticipate questions about what to do next and how to navigate a system that often feels stacked against both patients and professionals. What emerges instead are frequent requests for me to read passages aloud.
When I read stories that appear throughout the book, the room becomes pin-drop silent. Not uncomfortable, but attentive. People lean forward. Some close their eyes. Others quietly wipe away tears. Even after reading these stories again and again, my own eyes still mist. These are not reactions to theory or argument. They are responses to a painful reality many recognize.
What becomes clear in those rooms is that the frustration is not isolated to one role or perspective. Patients speak about waiting and uncertainty. Clinicians describe exhaustion and moral strain. Innovators and policymakers wrestle with systems that move more slowly than the problems they are trying to solve. The details differ, but the throughline is the same: people want care that recognizes their presence and treats them as more than a process to be managed. When that recognition happens, the tone of the conversation changes.
Since its listing, the book has spent several consecutive weeks on Amazon’s Top New Releases list. That matters in a conventional sense. Still, rankings, whether in print or digital format, do not explain what happens when people hear their own experience reflected back to them with clarity and respect. Stories do that work. Many are weary of facts and figures deployed to justify positions rather than illuminate lived reality.
Human experience carries a different kind of truth. It does not compete with data, but it precedes it. When experience is named accurately, people do not feel persuaded. They feel recognized. That recognition opens space for reflection, dialogue, and ultimately for change.
A Question That Changes the Room
I finished a book talk and signing with The Marfan Foundation, and the impact lingers beyond the formal program. During the signing, people ask thoughtful, personal questions. I often ask permission to respond by reading a short passage from the book. Then I listen to stories of courage, love, and endurance that surface naturally and without prompting.
Parents speak about children. Siblings talk about one another. Families describe navigating medical uncertainty and emotional trauma over years, sometimes decades. Individuals share how they discover the strength they did not know they possessed, and how they learn to share that strength with others walking similar paths. These are not stories of abstraction. They are lived, detailed, and deeply human.
The Marfan Foundation is one of the patient and professional communities reflected in the book, and in the room, the reason is unmistakable. Physicians are spoken of by first name – Alan, Duke, Kim and Reed – not title. They are described not as distant experts, but as people who show up consistently and with care. These stories remind everyone present that even in the most complex conditions, care is sustained by relationships as much as by scientific excellence.
Between Two Meetings, on a Moving Train
As I board a Brightline train for the next meeting, the contrast stays with me in a quiet, persistent way. I am traveling from a gathering centered on shared human experience to SCOPE Summit 2026, a global convening focused on clinical trials and research infrastructure. The agenda centers on development planning, protocol optimization, patient-centric trial design, site engagement and recruitment, generative AI, and the technologies that move science from hypothesis to evidence.
One meeting is rooted in lived journeys, where science is received as hope amid uncertainty. The other is grounded in structure and precision, where science is designed, measured, and scaled. Both spaces matter deeply, and both are essential to progress. Clinical research is where rigor lives and where uncertainty is reduced in ways that allow care to advance responsibly.
Yet the transition between these two gatherings and two cities reveals something essential. People do not leave their humanity at the door of the operating room or the halls of science. They carry it with them into protocols, endpoints, enrollment decisions and trial participation. Patients do not experience trials as abstractions. They experience them as acts of trust layered onto already complex lives.
When Structure Forgets Experience
Too often, human experience is treated as something to be accounted for after systems are built, rather than as a foundation for their design. Trials are optimized for efficiency and compliance, yet struggle when recruitment falters, participation drops, or trust erodes. These outcomes are not solely technical failures. They are relational failures.
Patient-centric trial design is not a feature added late in development. It is a mindset that shapes questions, assumptions, and priorities from the start. Site engagement is not a procedural step, but a relationship built over time. Technology reduces burden only when shaped by empathy, context, and understanding.
Rare disease communities such as The Marfan Foundation understand this instinctively. When systems fall short, patients and families organize, advocate, and collaborate more intentionally. In doing so, they model what the broader system aspires to scale: trust, continuity, shared language, and partnership. People do not fragment their lives the way systems fragment care.
When Experience Finally Counts
At SCOPE, this question becomes practical rather than theoretical. I moderate a fireside chat with StuffThatWorks executives Yael Elish and newly appointed CEO Julie Ross, exploring what happens when patient experience is treated not as a marginal input but as the foundation of artificial intelligence itself. Billions of dollars are invested in pre-clinical discovery, yet clinical trials remain a costly bottleneck, often stretching beyond seven years before therapies reach patients.
One story from the book captures why this matters. A woman living with a chronic autoimmune condition follows treatment guidelines faithfully yet struggles with side effects that force her to stop therapy repeatedly. Her medical record reflects non-adherence, not struggle. It is only when she joins a patient-driven community where thousands share lived experience that patterns emerge her clinicians have never seen.
Within weeks, she learns how others adjust dosing, manage side effects, and balance treatment with daily life. When these experiences are aggregated and analyzed, they do not contradict clinical science. They complete it. What once looks like noise becomes a signal when the human story is allowed to remain intact.
This is why patient-derived models matter. Real-world evidence is not simply post-market surveillance. It is the accumulated story of how people actually live with disease, navigate treatment, and make trade-offs that controlled environments rarely capture. These data are not neutral artifacts. They are lives rendered into patterns with meaning.
Restoring What Was Lost
What I witness in quiet rooms, at signing tables, and in conversations that follow readings is not resistance to science. I see the same truth as a fireside chat moderator, alongside people dedicated to bridging patient voice, data, and science in ways that honor those it seeks to serve. What emerges, again and again, is a longing for connection.
People are not asking to be spared complexity, nor do they believe science belongs only in a sterile laboratory. They are asking not to be erased by it. They want science that recognizes them even as it advances, and systems that remember who they are designed to serve.
This is where Why People Matter ultimately resides. Healing does not begin when systems are optimized or when data moves faster. It starts when relationships are restored and when people feel recognized within the structures meant to help them. Science advances when trust is present, and trust grows when listening is treated not as an accessory but as a foundation.
If there is a path forward, it is not found by choosing between humanity and innovation. It is found by refusing to separate them. Data matters because people do. And when science remembers that progress becomes worthy of the lives it touches.
