Putting patients first: how UCB ensure that innovation in science meets real needs

‘Innovation’ is a word we hear a lot in the pharmaceutical industry – be that innovative modes of action, innovative clinical development strategies or innovative digital solutions.

At UCB, we believe that innovation should always be linked to a patient insight. That can be an insight revealed through a greater understanding of disease biology, or it can be an insight captured through market research or translating their experiences, perspectives, and views into our clinical study design. That’s why we’ve developed and implemented a new framework centred around our most important stakeholder – the patient. This new robust end-to-end framework is designed to ensure that patients and key stakeholders provide direct insight and input as early as possible into the overall strategy behind research and development programs, as well as the entire drug lifecycle. We believe this patient insight approach plays a vital role in achieving success for communities across the world, as we know true innovation is about designing solutions with patients, rather than simply designing medicines for them.

Traditionally, patients were viewed by pharmaceutical companies as simply consumers, but over the past decade, patients have been increasingly active and empowered when it comes to decisions concerning their health. Nowadays, they are considered true partners working towards a collective goal. Our framework takes into consideration this progression of the patient role, embracing the notion of patient centricity, which places importance on patients as ‘co-creators’ in the R&D process. Patient engagement is no longer simply about validating assumptions or having patients participate in research; instead, it has become far more valuable to co-create solutions that tackle the diverse challenges that matter most to them as individuals and their caregivers.

When it comes to R&D, it’s critical to embed the ‘patient’ early. By ensuring their needs are understood and embedded during the initial stages, research and development programs can be grounded in real-world insight, helping to inform more impactful decisions as the R&D journey continues. At UCB, we work to obtain a holistic and 360-degree data-enabled view of the patient, working in tandem to answer critical questions along the lifecycle of drug development. It provides an opportunity for patients to offer insights into unmet areas of need, on outcomes that matter most to them and potential areas of concern regarding study designs.
 

As an example, UCB recently constructed the formulation, refinement and first evaluations of a new evidence-based approach to measure fatigue in Systemic Lupus Erythematosus (SLE), called FATIGUE- PRO (Patient Reported Outcomes) – developed in collaboration with patients who described their personal experience of living with the condition. These patients raised concerns that many instruments currently used to measure fatigue come with limitations, such as not addressing the breadth of fatigue they experience. The research team collected qualitative data throughout the process, and were able to refine the parameters, including physical fatigue, cognitive fatigue, and susceptibility to fatigue, based on patient insight. The result was a new PRO instrument to measure fatigue that addresses the conceptional limitations of current tools, and that will have a significant impact on the lives of SLE patients.

Listening and learning from patients at the earliest stages of research supports a deeper appreciation of patients’ reality and unmet needs. That’s what drives each and every one of us at UCB, though we’re all unique and all bring unique qualities to the work we do. That’s probably why we each have a unique take on what innovation means.

Find out more on why, at UCB, we’re driven to develop innovative solutions for patients here.