Could you give an indication of what you hope to bring to SCOPE, either product, message or both?
I love coming to conferences like SCOPE. It’s a fantastic opportunity to catch up with colleagues, hear insights from industry experts, and see new technologies.
This year we’re announcing three enhanced capabilities for the uMotif eCOA/ePRO platform. An Adaptive Scheduling and Questionnaire Engine provides flexible and responsive solutions for fast configuration of complex study designs, so there are no limitations on how and when interactions, visits and data capture from participants can occur. A Comprehensive Patient Engagement Toolkit is a suite of engagement tools that includes onboarding, home screen, content, notifications and reminders powered by our engine and design approach. And third, our Advanced Analytics and Custom Reporting gives CROs, sponsors and sites a customizable view of patient-by-patient data we believe is unique in the eCOA/ePRO market.
What are the biggest frustrations when it comes to engaging patients?
There’s a huge gap between the current eClinical technology landscape and patients. As trials become more complex the patient burden is getting more complicated. Patients have various – and often confusing – choices for completing tasks. Their experience becomes even more complicated by decentralized trials that can give them so many options they don’t know which way to go, so they drop out.
Based on my conversations with customers and colleagues at conferences like SCOPE, we’re making very slow progress. Pharma companies and tech providers are starting to communicate with patient groups and get feedback on protocols. But we need to move faster.
How can this be improved and what can be done to better understand the patients?
We have to pay attention to what people need to make them able and willing to participate in a study. Let’s start designing studies with the patient's perspective in mind instead of starting from the researchers’ point of view and the study requirements. Many eClinical tech provider will say they have solutions that are patient-centric, but we need to change the market’s approach to engaging patients. The current state of play doesn’t account for the total patient journey during the study. At uMotif we built our software from the ground with patients, for patients. uMotif’s value proposition is what took me out of retirement, I believe so much in the company’s approach.
Patient diversity is a target the bio and pharma worlds claim to take into account, do you think they do this in a holistic sense, or is there room for improvement?
There’s nothing but room for improvement! When pharma and biotech talk about diversity I don’t see many people thinking about the need for different approaches for different patient populations, other than their geography.
We need to see more physicians recommend more clinical trials to their patients. The particular challenge is for physicians to reach patients in underserved and rural communities.
In an ideal world, what different approaches should sponsors be taking for different patient populations?
I think before we look at different approaches for different patients, we need to change how we think about patients in general. Patients are heroes. They volunteer to participate in clinical research at a time when they’re dealing with often serious health issues. They sacrifice their time and bodies for the greater good, not just for their own potential good.
If SCOPE attendees could take away one strong, clear message from you to carry forward into their work, what would it be and why?
I’ve been talking about treating the patient better for a long time. It’s my guiding principle and I’ve learned from over 40 years in this business, it’s easier said than done. The technology we’ll see at SCOPE is only a part of it, but it can have a large positive impact on understanding and managing the patient’s engagement and burden.
We have to get into the mindset that people who participate in research need and deserve information beyond their informed consent about the study. They need to know how prepare for their next event in the study. And to be an engaged, active participant they need be treated like the heroes they are and be told how important they are to the study. And they need to be asked how they feel about it, all the time. I hope we can get there.