Protocol to People: Stronger Science Starts With Lived Experience

I’ve experienced the healthcare system at its limits and I’ve experienced its breakthroughs. My journey took me from a hospital bed to hospice care to a clinical trial that changed the course of my life.

So when I say clinical research should start with patients, I’m speaking from lived experience, from the places where the healthcare system didn’t quite hold.

Patient-centered research sounds good on paper. And I truly believe most research teams care. I’ve met brilliant clinicians and engineers who want to get it right. But here’s what I’ve seen up close: by the time patients are invited in, the biggest decisions are already made. The visit schedule is set. The travel expectations are decided. The materials are written. The timeline is locked. At that point, patients can give feedback but we’re not shaping the foundation. We’re reacting to it.

And that difference matters more than people realize.

Because early trial design is where trust is built… or quietly weakened before the first participant is even enrolled.

When I was navigating my own clinical trial experience, there were realities no protocol captured. The bone-deep exhaustion. The fear that hits at 2 a.m. The caregiver strain. The radio silence between appointments. The mental weight of not knowing what comes next.

That’s real life. And real life is what determines trial retention, recruitment success, and long-term trust in medical research.

If clinical research truly started with patients, it wouldn’t just look slightly different it would feel different from the beginning.

Study burden would be pressure-tested before a single person enrolls. Not on paper, but in real life. Could someone actually manage these visits? This travel? This schedule?

Caregivers wouldn’t be invisible support in the background. They would be recognized as part of the design because they’re often the ones holding the calendar, the meds, the emotions, and the logistics together.

Consent forms wouldn’t read like legal protection first and human explanation second. They would speak clearly. Honestly. In language people can actually understand at a stressful moment.

And retention wouldn’t be something teams scramble to “improve” halfway through. It would be built in from day one because the trial would be designed around how people actually live, not how we hope they can.

That’s the difference between adding patients at the end… and building with them from the start.

Right now, there’s a lot of conversation about patient engagement in research. And that’s progress. Building with patients from day one is still evolving across much of the research landscape.

That space between good intention and real structure is where recruitment starts to fall apart. It’s where trust matters. It’s where strong science quietly loses connection with the people it was meant to help.

HeartBridge Collective was born because I lived in the space where innovation was moving forward but real life was still catching up. I’ve felt what it’s like to stand between breakthrough science and everyday survival.

This wasn’t created to tear the system down. It was created to make it stronger. To connect the brilliance in the lab with the realities at the bedside.

To make sure lived experience is in the room when decisions are being shaped not after everything is already decided.

Patients are not a checkbox  or a quota on a compliance list.We are the ones taking the risk.The ones rearranging our lives.The ones signing the consent forms and carrying the unknown home with us.

We are human beings carrying risk, hope, fear, families, and real life into every study we join.

And when you see us that way, everything about the work changes. We are the reason the research exists in the first place.

And when lived experience shapes clinical trial design from the beginning, the science doesn’t weaken it gets stronger.

If we redesigned trials around real life instead of ideal conditions, what would recruitment, retention, and trust look like?

That’s the conversation worth having.

#ClinicalTrials #PatientCenteredResearch #PatientVoice #ClinicalResearch #StructuralHeart #HeartValveDisease #ResearchEquity #CaregiverSupport #HealthInnovation #HeartBridgeCollective #FromHospiceToHope