We believe research should focus on what matters most to patients and the public.
That’s why we are delighted that our approach to Patient and Public Involvement and Engagement (PPIE) has been featured in a special edition of the Journal of Patient-Reported Outcomes.
The article was written together with our Patient and Public Partners, who shared their experiences of being involved in the PRO‑CAR‑T™ study.
About the PRO-CAR-T™ study
The PRO‑CAR‑T™ study is developing a digital platform that allows patients to report their symptoms and quality of life during and after CAR T‑cell therapy, using an app on their phone or computer.
CAR T‑cell therapy is an advanced cancer treatment that uses a patient’s own immune cells to recognise and attack cancer. While it can be highly effective, it can also cause complex side effects. By capturing patient experiences in real time, the PRO‑CAR‑T™ system aims to help clinicians spot problems sooner and respond more quickly. Over time, this information could also help improve how these treatments are delivered for future patients.
About the publication
Although PPIE is widely recommended, it is not always included in studies that develop patient-reported outcome tools or systems.
Our article shows how meaningful PPIE can be built into every stage of a project - from shaping research priorities and reviewing study materials, to contributing to decisions and helping communicate findings in clear, accessible ways.
Importantly, the paper also highlights that good involvement doesn’t happen by chance. It takes careful planning, resources, and a genuine commitment to working in partnership. By sharing our experiences and practical strategies, we hope to support others to take similar approaches.
Why this matters
As treatments like CAR‑T become more complex, it is more important than ever that research reflects real patient experiences.
The PRO‑CAR‑T™ study shows that when patients and the public are true partners in research, it leads to better-designed studies, more relevant outcomes and ultimately, research that is more likely to improve care.
You can read the article here: The PRO-CAR-T™ study: achieving excellence in patient and public involvement and engagement | Journal of Patient-Reported Outcomes | Springer Nature Link