Delivering patient-centred progress in Clinical Trials

At the World Bladder Cancer Patient Forum 2024, a panel of experts joined to discuss patient involvement in clinical trials. Moderated by WBCPC President Dr Lydia Makaroff, the session explored how engaging patients throughout the research process – design, recruitment, and education – can lead to more impactful trials and improved outcomes.

Dr Lydia Makaroff set the stage by highlighting recent data from the WBCPC Global Survey, where 84% of bladder cancer patients reported they did not receive any information about participating in clinical trials. “Patient organisations can provide invaluable insights, from identifying patient preferences to shaping clinical trial designs that truly meet patient needs.” This underlined the importance of involving patients not only as participants in the trials but involve patient community as active contributors to trial success.

Michelle Colero from Bladder Cancer Canada illustrated the power of clinical trials to change lives.

Patient and broader public education is central to overcoming misconceptions about clinical trials. Michelle Colero explained that education takes many forms, from peer-to-peer conversations to step-by-step guides, but the most important message is this: clinical trials are not about being a guinea pig – they are about hope and progress for everyone. She highlighted initiatives like webinars, multilingual resources, and peer-led discussions that demystify clinical trials and empower patients to consider participation.

Michelle Hull from Johnson & Johnson shared how her role focuses on integrating patient voices into trial development and communication. “We’ve worked with the World Bladder Cancer Patient Coalition to develop a guide ensuring language used in trials is accessible. Patients shouldn’t have to learn medical jargon; instead, we need to adapt to their needs. Including patient perspectives has even influenced trial endpoints, highlighting the real-world impact of their involvement.”

Global equity in trial access was another important point. Lauren Pretorius stressed the importance of expanding research opportunities to underserved regions. “Two-thirds of bladder cancer patients live in low- and middle-income countries, yet research is concentrated elsewhere. These regions hold untapped opportunities to better understand the disease and improve outcomes for all patients.” With the right partnerships, we can unlock opportunities for research in these regions and better understand this disease globally.

Professor Jean Palou offered a perspective from the researcher’s side with decades of experience sharing the resilience required to see a trial through to completion. “Running a trial is a continuous learning process. It takes collaboration and adaptability at every step, but the reward is knowing you’ve contributed to advancing treatments and improving patient care.” he reflected. His account highlighted how collaboration between researchers, clinicians, and patient advocates is essential to navigating the complexities of clinical research.

The session concluded with a powerful call to action: patient involvement is not a token gesture – it is an essential ingredient in advancing bladder cancer research. From ensuring trial designs reflect real-world patient experiences to expanding global access to trials, the role of the patient voice cannot be overstated.

As Dr Lydia Makaroff summarised in closing “When we center patients in research, we don’t just improve the trial experience—we improve lives.”

Watch the full recording of the session, Clinical Trials in Bladder Cancer: Challenges and Opportunities, on the WBCPC YouTube Channel.