After 24 years, we are preparing our family home for sale. It turns out that sanding down walls is a lot like looking back at a life. You see the layers, the repairs, and the history. As I stand here covered in the dust of two decades, the lessons I learned during my years in hospice have never felt more urgent. Hospice teaches you that we don’t actually own anything. Not a house, not a title, not a status. We are just stewards for a little while. The only thing we truly leav

We’ve reached the end of our first series at HeartBridge Collective (HBC): The ICH E6(R3) Patient Experience Lens. Over the last few weeks, we’ve looked past the legal jargon and complex industry rules to ask one simple question: What does the future of clinical research actually feel like for you as a patient? If you missed any part of the journey, you can find the full breakdown of each topic here: https://www.maryburrell.com/heartbridgecollective Why This Matters Now The

This is the fifth and final post in our series explaining the new global guidelines (ICH E6(R3)) through real patient experience, not complicated policy terms. In clinical research, there are a lot of people involved: Doctors, study coordinators, sponsors, and research staff. Each person has a role, and each role has responsibilities. On paper, this is supposed to be clear. The Reality of the “Shuffled” Patient For patients, it often isn’t that clear. They’re told, “Call us i

When you live inside a clinical trial for years, it becomes more than just a medical study. It becomes part of your life story. Five years is a long time. It is filled with appointments, travel, tests, forms, and scans. It means having people checking on you constantly and knowing you are part of something much bigger than yourself. When it ended, I felt like a major chapter of my life was closing. A few things were happening at the same time: I was a patient, but I was also

This is the fourth post in our short series explaining the new global guidelines (ICH E6(R3)) through real patient experience, not complicated policy terms. Technology is everywhere in healthcare now, and clinical research is no different. You might hear terms like: Electronic consent (e-consent) Online portals Virtual visits Remote monitoring The Theory vs. the Reality In theory, all of this is meant to make research easier. Technology can be a real help when patients don’t

Everyone loves the miracle story. Hospice. No options left. Then a clinical trial. Then a second chance. For me, that second chance came through the early feasibility study of the EVOQUE transcatheter tricuspid valve replacement. I later continued follow-up as part of the TRISCEND II research studying this therapy for people living with severe tricuspid regurgitation, But what people don’t talk about very often is what happens after the miracle. When the swelling finally s

When people talk about clinical trials, they often talk about outcomes, data, and approvals. But what mattered most in my journey wasn’t just that a trial existed. It was how supported or unsupported I felt while living inside it. Behind every study are real people trying to survive long enough to reach the next option. And sometimes the hardest part isn’t the science. It’s the space in between. Here are some of the realities I lived through that rarely show up in trial repor

There’s a moment in healthcare that quietly shapes everything that comes after. I’ve lived it. It isn’t the test result, the gradient numbers, or even the final diagnosis. It’s the first contact. The first look. The first tone of voice. For me, that moment of safety didn't happen in a consultation room, it happened in a hallway during a 6-minute walk test. The Voice I Already Knew I remember my initial visit with the clinical trial doctors. It was during the height of COVID,

Cardiovascular disease is not rare. In the United States, nearly half of adults are living with some form of heart or blood vessel disease. It can affect anyone at any age, race, or background. But women face a different kind of risk. It is not just biological risk; it is a system risk. The medical system often fails to recognize these symptoms in women. Chest pain. Shortness of breath. Crushing fatigue. Dizziness. Swelling in your legs. Numbness that comes and goes. Too many

This is the third post in our five-part series explaining the new global guidelines (ICH E6(R3)) through real patient experience, not complicated policy terms. Before someone joins a clinical study, they’re asked to sign an informed consent form. In theory, this form is supposed to help people understand: 🌀 What the study is about and what will be asked of them. 🌀 What the potential risks are. 🌀 That they have the absolute right to say "no." The Reality Gap That’s the

Structural heart disease is not always a one valve problem. In today’s world of rapid transcatheter innovation, new clinical trials for aortic, mitral, and tricuspid valve disease are changing lives. Patients who once had no options now have real hope through structural heart clinical trials and transcatheter therapies. Innovation is moving fast, and that is something to celebrate. But here is the question we need to start asking: what happens when a patient who joined one he

They say a picture is worth a thousand words. But when you live with heart valve disease, one medical note can explain years of symptoms. For a long time, I felt my body changing. I was tired all the time. My chest felt heavy. The swelling kept getting worse. But the focus stayed on my past surgeries and my pulmonary arteries. Meanwhile, something else was quietly progressing, severe tricuspid regurgitation. My echocardiograms showed moderate leakage in 2005. By 2014, it was

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 clin

🫀 The 65+ Pulse Check You can’t protect what you don’t listen to. When was the last time someone listened to your heart? ❤️‍🩹 For many people over 65, shortness of breath, constant fatigue, or feeling “just a little slower” gets brushed off as normal aging. It’s not. These can be early warning signs of heart valve disease, a condition that is often treatable if caught early. At HeartBridge Collective (HBC), we believe no one should lose their independence or quality of life

This is the second post in our series explaining the new global guidelines (ICH E6(R3)) through real patient experience, not complicated policy terms. Clinical trials can feel overwhelming. So many visits. So many rules. So much paperwork. That’s where a newer idea comes in called Risk-Based Quality. Here’s what it really means: Not every part of a study carries the same level of risk. Some things matter a lot for patient safety and trust. Other things matter… less. Risk-base

Life can change fast . Sometimes it’s one symptom. One scan. One “we’re not sure yet.” And suddenly you’re on a long road you never asked to be on. My story isn’t just about heart disease. It started with an idiopathic rare disease that most people including doctors have never even heard of. That rare disease set off a chain reaction that eventually led to something wild: a 52mm EVOQUE transcatheter tricuspid valve replacement —basically a new heart valve placed through a ca

February is Heart Month — and it holds more than one truth. Heart Month does important work. It raises awareness. It saves lives. It gets people talking. And there’s still a part of the conversation we don’t always make enough space for. Heart disease isn’t only about numbers, charts, or wearing red. It’s about real people living inside the system. ❤️‍🩹 It’s the woman whose symptoms were brushed off as stress or anxiety. ❤️‍🩹 The caregiver quietly holding everything togethe

This perspective didn’t come overnight. It grew out of almost four decades of living as a patient inside the healthcare system. Because Numbers Don’t Tell the Whole Recovery Story The gap between what medicine measures and what patients actually live with. The gap between a “successful outcome” and what real recovery feels like. The gap between innovation moving fast and patients being left behind. I learned about this gap by living inside it. I was the patient who looked “fi

This is the first post in a short series that explains ICH E6(R3) through real patient experience, not complicated policy terms. When people hear the words "clinical research," they often think of rules, paperwork, and checklists. But there’s a newer idea guiding research today called Quality by Design (QbD)—and it actually matters a lot to patients. Here’s the simple version: Quality by Design means researchers are supposed to think things through before a study starts, ra

In the world of medical research, we often hear about "difficult patients" who just stop showing up. But at HeartBridge Collective, we see things differently. These aren't just complaints, they are warning lights telling us the system is broken. When a patient leaves a study, researchers call it "attrition." They usually think the patient just lost interest or didn't like the medicine. But the real reason is usually much simpler: The system made it too hard to stay. The Prob