BUILDING BETTER CLINICAL TRIALS

UCB saw success with integrating the patient voice into the development of its anti-epilepsy treatments. Lessons were applied from that success into the roots of the organization and across all of UCB's clinical development work.

After seeing first-hand the value of the patient voice in the development and launch of one of its anti-epilepsy treatments, UCB embarked on a journey toward deeper patient focus and integration. UCB's clinical development team, in partnership with its chief medical officer, worked to design a strategy that would weave patients into its efforts across the clinical development continuum.

Unlike many other organizations that need to be convinced of the value of the patient voice, UCB was already sold. The organization had a great deal of enthusiasm and support from senior leaders, but no concrete strategy for putting that enthusiasm into action. How could they actively weave the patient voice across UCB's clinical development spectrum in a way that replicated (and built on) previous development successes, delivering meaningful value to patients? 

UCB looked to CTTI's Patient Group Engagement (PGE) recommendations to underpin its patient value strategy. Specifically, UCB leveraged CTTI's chevron diagram exploring patient engagement opportunities across all stages of clinical development.

Starting with the CTTI infographic, UCB identified the vision for clinical development and then dug into the details, identifying areas to strategically weave the patient perspective into its clinical development process. Using the CTTI model as a foundation, UCB tailored the diagram to be fit-for-purpose and aligned with its organization's unique needs. UCB realized that widespread employee adoption of its patient value strategy depended on infusing it all the way down to the roots of the organization. That's why it launched a global training and awareness program to engage and energize employees as soon as the strategy was deployed. The program showcased not only how UCB would now work with greater patient focus, but also why the change was necessary.

UCB has transformed from an organization that reactively incorporates patients into its processes to one that plans for robust patient input starting at the earliest stages of a project and continuing regularly across its development lifecycle. The organization's culture has fundamentally shifted, which has been facilitated by leadership support of the new strategy and employees energized to deliver greater value to patients. Always looking to improve its processes, UCB uses a patient survey, combined with benchmarking data, to establish a baseline for the patient experience in its clinical studies. The surveys are used to identify signals that help UCB target its efforts toward more patient-friendly clinical study designs. Once UCB pinpoints those designs, it looks for trends. Do patient-friendly designs impact the study's overall performance? Is there better recruitment, retention, or quality? UCB expects those answers to be affirmative, but has not yet accumulated enough data to draw a definitive conclusion.

UCB appreciates that many pharma organizations are struggling with challenges similar to theirs: companies have lots of enthusiasm philosophically for patient-centricity, but lack a systematic strategic plan to bring that philosophy to implementation. Through UCB's membership with TransCelerate and its Patient Experience working group, UCB has been able to collaborate across the pharma industry in the development of tools that any research organization (academic or commercial) can employ to more effectively and strategically partner with patients.  For every organization, a collaborative approach across the company to start the effort is needed. UCB, for example, brought together the various internal stakeholders who lead clinical development along with patient partners to help everyone appreciate the need for patient engagement. Patient engagement advocates should keep in mind that we work in a commercial industry and be prepared with a value proposition to gain buy-in. The CTTI-co-authored white paper on Assessing the Financial Value of Patient Engagement is cited as a solid case for the dollars and cents advantages of employing a patient-centric approach.