Jessica Ibbitson, Vice President of Clinical and Development Operations Breaking barriers to better therapies

New therapies are thoroughly tested in clinical studies. This is necessary to ensure they are safe and efficacious, but for a company like ProQR, which aims to treat small groups of patients with rare diseases, innovating within the system is essential to removing the obstacles on the way to caring for patients. As one of our new faces of 2018, Jessica Ibbitson is trying to rethink the way we do clinical studies.

Photo of Jessica Ibbitson

Jessica joined ProQR at the beginning of 2018, after several positions in the pharma industry. Her last job before the transition to Leiden was at Vertex Pharmaceuticals, where she worked on rare diseases.

What drew you to ProQR?

“I loved what I was doing, but when ProQR approached me I knew I couldn’t pass up on their offer. I was attracted by the fact that it was a smaller company, working on rare diseases too and patient-focused in a way I’ve never seen before. I saw an opportunity to be disruptive in terms of how we approach clinical studies.”

How do you see that now, after almost a year? What are your goals?

“One way I’m trying to make ProQR different is in our relationship with the hospitals that run our studies. We aim to have not just a closer relationship with them but a partnership. Even though we work with clinical research organizations, we recognize that it adds more links to a chain so we’ve decided to take on tasks in order to reduce those links. By taking on more tasks ourselves, we can limit the administrative burden of the doctor, so that they can spend more time with their patients. But there is more to this. A direct relationship also means that information travels more freely, which means that it’s much easier for us to understand the daily practice of care, and what the challenges and barriers are for hospitals, doctors and patients. To make sure that they have no hesitations about joining a study, we need to eliminate as many of these barriers as possible.

These barriers are not only about value and information. As a smaller biotech company, we have to think about efficiency as well – and often these goals go hand in hand, because a direct relationship with a doctor who has only one point of contact means that things move not only better, but quicker too.”

Which barriers are you going to tackle next?

“Well, in 2019 we’re starting to introduce more digital technologies into our clinical trials. This, too, is about eliminating barriers for participation in clinical research. For example, we are trying to stimulate doctors to record more patient information digitally, on our eSource platform. This overcomes the inefficiency of double data entry, making it faster, more accurate and less costly.

But let’s not forget that it also generates insight more quickly, because it will instantly tell everyone involved how a treatment is going. And since this also allows the doctor to spend more time with the patient, it creates more value too.”

How is the reception of this technology among doctors and hospitals?

“They are excited. We are aware that the world of clinical practice is very risk-averse. They have to get used to new technology, and be sure that changing their ways doesn’t affect the quality of their care. To guarantee this, we work side-by-side to explain our vision in a way that makes them comfortable. They really are our partners in this, so we have to take this journey together.

The other two ideas we are going to implement in the next year are more patient-centric. We are going to launch wearable and voice-assistant devices. They are two sides to the same coin, because both are ways to increase data, reduce cost and reduce the burden on the patient and the hospital. The wearable is a bracelet that tracks activity and sleep. This is very relevant for many patients with eye-related diseases, because when you’re visually impaired your day/night rhythm can also suffer. Of course the bracelet measures these things in real time, so it gives us and the doctor much more data to work with, and may uncover effects of the therapy that we would have otherwise missed.

The voice system is software that you can install on your voice assistant that you can talk to and give commands, like the Alexa device. The potential it carries is different, but multi-faceted. For example, it can take questionnaires from patients without the need for them to carry and store papers, which is quicker and relieves patient burden. It could also remind them to go to an appointment at the hospital or to take their medication, which helps compliance. And last but not least, talking is much easier for patients with eye-diseases than reading and writing. Both the wearable and the voice assistant have the potential to reduce the time needed for visits to the study hospital. This is significant for the patients that we work for; as some of them have to fly or cross borders to visit the specialist.”

What is your ideal future scenario?

“We already went from a company that was maybe more traditional in study design, to, in a very short time, becoming really technology and digitally focused in terms of how we execute studies. Looking ahead, the ultimate disruption for me would be to have broken all barriers. One ideal I have is ‘siteless clinical studies.’ The need for a physician or hospital will never go away completely, but what if we could give patients a box containing their medication, their wearable and other needs, and they would be fully empowered. Then patients from all over the world could participate in our studies.”

The Thru My Eyes app

One digital innovation that Jessica is especially excited about is the Thru My Eyes app. It’s an IOS app we developed that allows people to experience how patients with a certain eye-disease are perceiving the world. Jessica: “The app is a simple but clever idea based around one question: how does a patient actually see? Using sliders, you can simulate certain characteristics of a disease, such as tunnel vision or visual acuity (sharpness of vision) on what the phone’s camera is seeing. We coupled it to medically relevant values, so it’s possible to set it to a certain individual’s diagnosis. This is a great tool for the patient’s loved ones to really get an idea of what he or she is going through. The app is still in its early stages and we’re eager to develop it further, adding more disease simulations and functionalities.”

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Example screens of the Thru My Eyes app

Source: ProQR's Annual Magazine 2018

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