💡 Getting There Is Part of Care

Making Clinical Trials Easier to Reach and Easier to Live Through

When I first tried to join a clinical trial, I had no idea how much time, travel, and hope it took.

I drove to another state three times, chasing a chance at life.The first two trips ended in disappointment, a quiet, heartbreaking “no.”

By the third, I was exhausted and scared, but hope wouldn’t let me stop.

That final trip changed everything. It gave me my second chance at life.

My daughter took time off work and stayed in a hotel for a week while I went through testing. It wasn’t just physically draining, it was emotional too.

That experience forever changed how I see research.Getting to a trial shouldn’t feel like climbing a mountain.It should feel like care.

If we want more people to join (and stay in) clinical trials, we have to make it easier for them to get there and care for them once they do.

🚗 Make Travel Part of Care

• Cover gas, parking, or rides up front, not after the fact.

• Offer hotel vouchers or partner with nearby hotels for discounts.

• Create travel coordinators who help patients plan trips and ease the stress.

Every trip carries both hope and fear, hope for healing, fear of rejection.That effort should count, even when patients don’t qualify.

🕓 Respect Patients’ Time

• Offer early morning, evening, or weekend appointments.

• Combine tests or visits to reduce travel.

• Use telehealth for check-ins that don’t need to be in person.

Patients plan their lives around these visits. Jobs, kids, and bills don’t pause.Respecting patient time isn’t just polite, it’s part of care.

🏡 Bring the Study to the Patient

• Use home health visits or local labs when possible.

• Try mobile research vans for rural or hard-to-reach areas.

• Partner with community clinics so patients can participate closer to home.

For some of us, “getting to care” means crossing state lines or comfort zones.Bringing the study closer isn’t only convenient,  it’s compassionate.It tells patients, “You belong in this research too.”

👩‍👧 Support the Whole Family

• Offer stipends for childcare or caregiver time.

• Provide meal vouchers on long testing days.

• Create rest areas or family rooms for caregivers who wait.

When one person joins a trial, the whole family shows up, driving, waiting, worrying, and cheering.Supporting them supports the patient too.

💬 Keep It Human

• Give each participant a single point of contact who checks in and listens.

• Use plain language in every form and consent.

• Ask patients what worked and what didn’t.

Care shouldn’t end when the study does.Patients deserve updates, follow-ups, and someone to call when new questions arise.

💜 Mental and Emotional Health Matter

Trials often focus on the body, but healing is emotional too.Having someone to talk to, a peer, social worker, or mentor makes all the difference.

After my procedure, I didn’t crash physically at first. I crashed emotionally.No one understood what it felt like to survive hospice, join an early feasibility clinical trial, and live with a heart valve not yet FDA-approved.

There was no roadmap for that kind of recovery.

That silence is what I want to change.That’s why programs like HeartBridge Collective’s Mentorship Network exist, so patients never walk through survival alone.

🌉 What Else Matters

If You Don’t Qualify — You Still Matter

Even if patients don’t make it into a study, they deserve a follow-up call, resources, and a next-step plan.

No one should be left hanging after giving so much of themselves.

Clear Communication Builds Trust

Give every patient a direct contact card, one number to call (no phone trees) for questions or emergencies.

Transparency about what’s covered (gas, hotels, meals, childcare) helps patients focus on healing, not money worries.

Return Results Respectfully

Science moves forward when patients are seen as partners not subjects. We have a right to know what our stories and our samples helped reveal.

Smooth Transition of Care                                                                                                   

When a study ends, make sure the patient is smoothly handed back to their local doctor.No one should fall through the cracks between research and real life.

Measure the “Patient Burden”

Every mile, every missed paycheck, and every sleepless night tells a story.                           Collect that data, then use it to build studies with more compassion and less strain.

Involve Patients from the Start

Include patients and caregivers in designing visit schedules, consent forms, and follow-up plans.

Informed consent isn’t a form, it’s an understanding, it’s a conversation.

Build Community Trust

Partner with local clinics, churches, and community spaces where people already feel safe.Real trust starts close to home.

Make Mental Health a Priority

Offer counseling or mentor check-ins at key moments like screening or study completion.Emotional care isn’t optional, it’s part of real healing.

❤️‍🩹 Access Is Compassion

Access isn’t about convenience it’s about fairness and empathy.When we design research that fits real life, we open doors for people who might never have had the chance.

🌉❤️‍🩹 Learn more about how HeartBridge Collective is bridging hearts, minds, and innovation one lived experience at a time.

—where we speak from the heart, for the heart.

#HeartBridgeCollective #PatientVoice #AccessIsCare #TricuspidValveMiracle #ClinicalTrialsMatter #CareBeyondTheProcedure #Heart2HeartTalk #HospiceSurvivor