The Cost of Silence: Why Clinical Trial Coordination Needs a Human Touch

maryrburrell
7 days ago
3 min read

You may remember I wrote about a scheduling "snafu" earlier this year. I wish I were writing to say things have improved. Instead, I am posting this update because the same communication problems continue to affect my clinical trial care.

This isn’t just about one missed appointment or a simple mistake. It is an ongoing pattern—a systemic problem that places the burden of coordination directly on the patient. It is creating stress that doesn’t need to exist—for me or for my family.

The Struggle of Clinical Trial Participation

The main problem is how follow-up visits are scheduled and communicated. In theory, clinical trials are high-tech. In practice, the human connection is often missing.

From my side, this is what keeps happening:

Staff Turnover: Coordinators change often. The phone numbers I’ve used for months suddenly stop working without notice.
Tech Gaps: I cannot message my trial team through MyChart. It feels like a communication "black hole."
Ghost Scheduling: Appointments appear or move in my patient portal without anyone asking me first.
The Burden of Fixer: I end up chasing people down and fixing scheduling errors myself.

This shouldn’t fall on the patient. We are already managing our health. We shouldn’t have to manage the clinic’s calendar, too.

Why Planning Isn’t Optional

I don’t live near the research site. I travel out of state for these visits. Planning ahead isn’t a choice—it’s a requirement.

My daughter is my caregiver and my driver. She has to take time off work and leave her family to get me to these visits. This takes real coordination. When the site makes last-minute changes, it makes life harder than it needs to be.

Clear communication shouldn't be an 'extra'—it should be built into the study from day one.

The Stakes of the Final Visit

I am now entering the final year of this study. This upcoming visit is my final trial visit. In the world of research, this is a major milestone.

The final visit is the last safety check and the closing of the data record. If a visit happens at the wrong time (outside the "protocol window"), it can cause serious problems for the study results. I’ve spent years supporting this research. I want my data to count!

Recently, an appointment was made in the MyChart portal with no warning. No one checked my schedule. I was told it was due to "internal scheduling." It took two weeks of waiting and finally an email to get a response.

I have the experience to speak up and the persistence to send those follow-up emails. But the truth is, most patients wouldn't go this far. Many people don’t have the time to chase down coordinators or the confidence to ask for a meeting with a Director. When the system becomes this difficult to navigate, many patients simply give up and walk away from the study. We can't expect research to succeed if we make it a second full-time job for the participants.

This is why I am meeting with the Clinical Trials Administrative Director right after my appointment. We need to move past 'internal' excuses and start building systems that actually work for the people in them. 🤝

I’m hoping this talk leads to real changes. Stay tuned—I’ll be sharing an update on how it goes!

Final Thoughts: Building Better Systems

On top of all this, my daughter is scheduled for major surgery, and I am her caregiver. Between her recovery and my travel, unapproved changes simply do not work.

To finish this study the right way, I need three things:

Talk to me before moving my final visit.
Confirm if new dates still follow the study rules.
Provide one clear plan that doesn't change without a conversation.

A trial participant should not be at risk of missing their final visit because of a clinic's schedule. I have shown up. I have followed the rules. Now, the system needs to support the people it depends on.

This is why HeartBridge Collective exists—bridging hearts, minds, and innovation, one lived experience at a time. ❤️‍🩹🌁

#PatientVoice #ClinicalTrials #ResearchParticipation #HospiceSurvior #HeartBridgeCollective #HealthcareCommunication #Heart2HeartTalk #DecentralizedTrials #BridgingTheGap #LivedExperience #NoPatientsNoScience #PatientExperience