Healthcare Intelligence 2020 Scott Schliebner Editorial Article Header v1r1

You know those personality tests that are all over the internet? Every time I take them, I come out as “The Adventurer.”

I’ve always liked exploring, being adventurous, and going to places I’ve never been to before. When I was 13, my mother, sister, and I took a trip to Europe for an entire summer. It was my first time there. We spent about two months in Paris, then we traveled around for a month. As we traveled, my mother kept getting lost. At 13, I couldn’t physically drive us, but I was good with a map and had a plan in mind. So, I finally took over as our planner, leader, and navigator for the rest of the trip.

From that age onward, I think I’ve always been really comfortable getting myself into unfamiliar territory and figuring out where to go from there. I’m pretty comfortable anywhere—whether it’s on a ski slope, biking around Amsterdam, or presenting at a conference. I like going to new places and figuring them out. There’s a ton out there in the world and I just want to see it all.

That thirst for adventure has never really wavered. As a somewhat immature 18-year-old, I enrolled in college at Syracuse University—partly because I had grown up in the area and had friends going there, but at the end of the day, I decided to go there because the basketball team had been good the year before.

Scott skiing
Scott cycling

I tested the waters quite a bit while in college. I majored and experimented in a couple areas, but after a few years, I needed a change of scenery. I needed to get out of Syracuse and go somewhere different—a move, a fresh start. So, I packed my bags and transferred to the University of Colorado in Denver, Colorado.

When I got to Colorado, I stumbled across a professor who ended up being a sort of wild guy. He was a rock climber from England, a long-haired hippie, and also a super smart, unorthodox person—I really liked him. I got involved in his research lab, running some experiments in things like psychology, neuroscience, and cognition for him. Pretty quickly, I was a junior in college with all these publications and scientific articles we had written together. He took me under his wing and showed me that you could be involved in science and still have fun. He made it cool and interesting, and it really ignited a spark and an interest in me that I’ve carried with me ever since.

College helped me discover that I was an analytical guy that had good aptitude for research.

I also realized that some of the stuff I was doing was pretty boring and didn’t have a lot of applicability to life. I specifically remember sitting down one day to work on this big federal grant I was writing, and I had to justify why the research we were doing deserved all this money. I found myself asking, “Is this research really that important?” Besides a couple dozen academics who were really focused on that one specific question, it suddenly didn’t seem to matter in the big picture. That’s when I realized that, although I was definitely oriented towards research and analytical endeavors, I also needed to do something that could make a real, tangible difference to people. It was around that time that I stumbled upon clinical research.

When I got involved in clinical development, I wasn’t interested in working on a new acne medicine. I was drawn to working on the hardest trials and the most challenging areas, so I really gravitated towards oncology and hematology research where I had the opportunity to work on new therapies that could quite literally save peoples’ lives. I wanted to learn a lot and that led me to work at a few biotech companies that were pursuing some really novel, innovative approaches, like radiolabeled monoclonal antibodies. This focus led me to some really niche areas within oncology and hematology that were pretty rare, and—when PRA gave me the opportunity to really look around our organization and identify gaps where we could build—I knew that I wanted to focus on rare diseases.

When I started the Center for Rare Diseases in 2012, rare diseases were not a hot topic. I remember going to these big oncology conferences where there’d be 50,000 people and million-dollar booths. On the flip side, you had no one talking about rare disease drug development. No one was developing treatments for these rare disease patients that so desperately needed them. For many of these patients and families, there are no approved drugs or treatments for their disease. Clinical trials are their only hope. I felt compelled to help support developing new therapies for this group of patients who were neglected and overlooked and needed a different, unorthodox approach.

At that time, whenever PRA got an opportunity to work on a rare disease study, it was like sticking a square peg in a round hole. We didn’t have a good way of doing it, especially since this area required such a customized approach. I knew that we had all the right ingredients to run these trials—we had the tools, the scientific and medical staff, the good data sources—we just didn’t have the right approach. So, I decided to take a risk. I went to our executive team and told them I wanted to start a rare disease center.

Initially, they thought I was crazy. There was no money in that kind of research. No commercial viability. I told them they were wrong. I knew that we could build a model that would better facilitate these types of studies, and I came back with data to back up why we needed to jump into this area. I shared my vision with them and fortunately, they were willing to take that risk with me.

My wife tells me I’m the scrappiest person she’s ever met.

I guess you kind of have to be in my line of work. There’s a great quote from the scientist Louis Pasteur, known for his breakthroughs in vaccination, that I always come back to: “Let me tell you the secret that has led me to my goal: my strength lies solely in my tenacity.”

I’ve always felt that if I need to figure something out or make up for the experience or education I don’t have, I can work a little harder. Targets that are way off in the future don’t intimidate me. I’m not swayed by delayed gratification. What I fear is complacency. I’m one of the weird ones who really likes to get out of their comfort zone—skydiving, tackling ski runs that seem impossible, biking 30 miles after a long day at work, presenting in front of a large crowd, even proposing the Center for Rare Diseases was a risk. I like forcing myself to do something I haven’t done before and figure it out. I find it fun, actually.

Scott tandem
Scott conference

I find that stepping out of your comfort zone forces you to confront challenges and learn more about yourself. When you do it, short of falling or dying, I think that you grow and learn. When you see that you can get through a challenge, you learn a little about that and the next challenge that you face is easier. You have more confidence that you can figure it out.

It’s hard not to want to step up and push boundaries—in the work that we do and at home around my family. My wife and kids are pretty freaking awesome. The way they operate and act is inspirational to me and makes me realize I always need to step up my game. And, since founding the Center for Rare Diseases, we’ve built this dedicated team that is so focused and strong. As their leader, I need to be supportive of them. I need to be inspirational, pushing them to keep taking this important work one step further. My team makes me a better person and a stronger leader.

We work a lot with patients and patient advocates who are powerful, incredible people. For many of them, they were just cruising along in life and suddenly they got a diagnosis that turned them on their heads. Suddenly they’re leading a non-profit organization to raise money or awareness for their disease. They’re trying to get treatments developed and going to pharmaceutical companies to get drugs off the warehouse shelves and to the people who need them.

Every rare disease patient, alongside their families and loved ones, is on a unique journey. The way they’re able to be persistent, effective, and inspirational drives me every day to fight and advocate for changing the way we do business. Clinical trials are the only option for many of these rare disease patients. We owe it to them—and to ourselves—to navigate the complex rare disease clinical space with grace and courage.

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