I’ve been traveling a lot lately and have had the privilege of spending time with some wildly brilliant and passionate scientists who work every day to make a difference for patients suffering from rare lung diseases around the world.
The travel has also given me something I don’t get very often: time to think. As someone who is closer to the end of my career than the beginning, I’ve found myself becoming a little reflective lately. Thinking about where we’ve been, what we’ve accomplished, and why we started this journey in the first place.
Nine years ago, OSIC was founded with one goal: radical progress for patients living with fibrosing lung disease, and for the families and caregivers who walk that journey alongside them.
Back then, I thought we were building a database.
Truth be told, I had absolutely NO idea what I was getting myself into. Technically, politically, scientifically…none of it. Had I stopped long enough to think through all of the challenges ahead, I probably would have talked myself out of taking the role altogether. But I truly didn’t know what I didn’t know, and did it anyway (a habit I must figure out how to break).
What I did know was that after losing my sister to a different rare disease, and then being given the opportunity to help make a difference in this one, it felt like a sign that I was supposed to take on this challenge.
So I said yes.
Early in the journey, I was talking with a well-respected pulmonary fibrosis physician in London who is both brilliant and professorial. I asked him why we hadn’t made more progress in the disease. He paused and then said something that has stayed with me for nearly a decade:
“Elizabeth, we are not yet greater than the sum of our parts.”
At the time, I got what he was saying, but I don’t think I fully understood what he meant.
Today, I certainly do.
We have extraordinary researchers, dedicated clinicians, innovative companies, passionate patient advocates, incredible data scientists, and hopeful patients and families willing to share their stories and their data in the hope that someone, someday, will move the field forward. Yet too often, we still work in pieces instead of as a whole. In many ways, the last nine years have been about one thing: trying to become greater than the sum of our parts.
When people talk about OSIC today, they often talk about the size of the repository (it’s the largest and most diverse in fibrosing lung disease), the clinical data that is with it, the publications, the partnerships, or the technology we’ve built together on behalf of patients. And I am incredibly grateful for all of it.
But if I’m honest, I don’t think those are our greatest accomplishments.
Our greatest accomplishment is that hundreds of people around the world trusted each other enough to build something together. The right way. The honest way. For patients, not for glory or gain. Those things may have come in the form of publications, new drug pathways, and new algorithms, but for the most part, they never felt transactional; they felt meaningful.
Trust is what allows us to bring together patients, researchers, industry, AI, imaging, and clinical data around a shared mission. And trust is what will be required if we’re finally going to become greater than the sum of our parts. Trust for OSIC wasn’t the destination; it was the foundation. The destination, for me, is to put myself out of a job by helping to cure these diseases. That would be my greatest hope, and it remains the fuel that drives me every day.
At the same time, I think a lot about the fact that we are still not moving fast enough.
For diseases like pulmonary fibrosis, where most patients don’t get the luxury of decades, nine years is a long time. In the time OSIC has existed, we’ve effectively lost two generations of patients. That’s a sobering thought and one that really keeps us focused.
Today, more than anything, I’m grateful. Grateful to every patient, investigator, contributor, institution, partner, and friend who has trusted us along the way. We’ve come a long way together. But we still have work to do.
Radical progress for patients, by becoming greater than the sum of our parts.
That was the goal nine years ago.
It’s still the goal today. Onward….
