💹 Somewhere between MyChart and policy, we lose people.
- maryrburrell
- Nov 11
- 3 min read
Simply because connection was never the system’s design goal in the first place.
📱Today I got a notification in MyChart — that little ping that’s supposed to make managing your care easier. It told me to schedule my final clinical trial appointment.
So, I followed the instructions. I scheduled my echo. A few minutes later, the phone rang — it was the clinical site coordinator asking to reschedule the appointment I just made.
Turns out, the doctor assigned to my study is only available on a different day. MyChart had happily offered me a day that didn’t align with the research schedule.
How can we keep calling this “patient-centered care” when the systems designed to support patients don’t even talk to each other?
❤️🩹 The Problem Isn’t People — It’s the Process
I'm going to be honest. The coordinator was kind, professional, and doing their best. In fact he went over and above to help correct course. But the fact that I could even book something that didn’t match the trial’s schedule says a lot about how disconnected our systems are.
Clinical trials are complex — every test, lab, and doctor visit has to follow a strict timeline. Yet the very portals we use as patients are built for standard care, not research care.
So we’re left navigating between two worlds:
🩺 The medical system that treats us as patients,
📊 and the research system that tracks us as data points.
The patient — the human being — ends up doing the job of connecting them!
🧠 Continuity of Care Isn’t Just a Buzzword
Patient-centered care means more than nice slogans and glossy brochures. It means I shouldn’t have to play scheduler, project manager, and protocol checker just to stay compliant. It means my care experience should be connected — not scattered between apps, emails, and phone calls.
Continuity of care isn’t a luxury; it’s the foundation of trust. When systems fail to coordinate, it doesn’t just waste time — it chips away at the confidence that keeps patients engaged.
𝌡 What Needs to Change
I'm not talking blame. It’s about design. If patient portals can flag “urgent test results,” they can flag “research participant — coordinate with study team.” If hospitals and sponsors talk about patient-centered research, that conversation has to include the systems patients actually use.
Here’s the truth: We don’t need more technology — we need better connection. We need healthcare and research systems that actually see the same person, not two separate charts.
Because every patient deserves a process that values their time, energy, and trust as much as their data.
🧩 Sometimes the problem isn’t that people don’t care. It’s that the system wasn’t built with the patient at the center.
This isn’t just about inconvenience.These gaps — between MyChart and policy, between care and connection — have real consequences. Every missed message, every confusing appointment change, every unanswered question chips away at trust. And when trust breaks, patients walk away. Clinical trials already struggle to keep participants engaged. Not because people don’t care — but because the system makes it hard to feel cared for. Retention isn’t about reminders or reimbursement.It’s about relationship.When patients feel seen, heard, and supported, they stay.When they don’t, they leave — and the science loses more than a data point. It loses a person.
🛠️ It’s time to fix that.
HeartBridge Collective exists to rebuild what was never designed for us —to connect the dots between research and reality, between care delivery and human experience.
Because the future of medicine will rise or fall on one truth:connection doesn’t slow science — it strengthens it. ❤️🩹🥑
Comments