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

Because lived experience explains the “why” behind every statistic.   ❤️‍🩹 I can’t shake this one line that keeps echoing in my head: “Data comes alive through a real human story.”  ✨ It sounds like something you’d jot down during a meeting about “impact,” right?But honestly… that line sums up my whole life.A little humbling. A little exhausting. And every bit is true. The Two Worlds We All Move Through 🌍 Most of us bounce between two very different worlds. 1. The World of

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 onl

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