The role of the patients who participate in clinical trials cannot be underestimated. Yet, we often don’t think about the value they get from their involvement, and how it impacts their daily lives.
Here we talk to Rob Marshall about his dual perspective on clinical trials – from his role in Perceptive’s R&D team and from being a clinical trial patient.
I’ve participated in numerous trials for asthma treatments. In fact, in one of those trials, my symptom improvement led my doctor to change my prescription to the treatment being studied. And I’m still benefiting from that treatment today.
I’m also the parent of a child in clinical trials. My daughter was diagnosed with a nut allergy when she was very young and for years, we ran the risk of her falling into a life-threatening anaphylactic shock if she wasn’t careful about what and where she ate.
So, when we had an opportunity to enroll her in a trial, we jumped on it. Even though the investigative site was 100 miles away, causing us to travel at least twice/month, often including overnight stays. We knew that by having her participate in the study she would eventually benefit from new treatments being developed. And we were right. In the past ten years, it’s been a delight to watch her eat a chocolate bar with nuts or order a piece of cake in a restaurant without worrying about what ingredients were used. It’s truly been life changing.
It’s improved the experience massively. For example, when I first started clinical trials in 2010, I had to go to the investigative site for spirometer tests to evaluate my exhalation levels. They’d cart in a big machine with a monitor, graphs, etc. that I’d have to blow into repeatedly (figure 1). If it wasn’t configured correctly (which was often the case), we’d have to start all over again, which lengthened the amount of time and effort for patients and clinicians involved in each visit.
Now, 12 years later, I’m given a hand-held spirometer device that fits in my pocket and connects to an app on a phone. I can easily use the device to test my exhalation levels wherever I am, and the data is automatically uploaded to the study database. It’s remarkable how easy it is and saves a lot of time and hassle that I used to go through when having to go to the investigative site on a regular basis.
I manage a couple of software engineering groups at Perceptive, and we often have discussions around the features and outcomes of the products we’re developing. I’m in a unique position because I can offer insight into the end user’s experience, for example, what it’s like from the patient side to go through the randomization process. And I’m happy to give that context and to advance the conversation because not only am I helping engineer product technology that supports clinical trials, I’m also a user as well.
The life-changing outcomes my family and I have benefitted from drive my ongoing participation. It makes me proud to know that I’m doing my part, knowing it will benefit others who lives are disrupted by disease, just as mine and my daughter’s lives have been. I highly encourage everyone to get involved in trials for that reason.
As I go about my daily job, I try to challenge myself and my teams with how we can make the trial process better. How can we bridge the gap between developing our solutions and the investigative sites and patients that use them? My thinking is the more we understand what it’s like for our end users to participate in a trial, the better we can be at developing the solutions that will simplify their experiences, and ultimately contribute to the development of new treatment options that so many patients need.
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