The Cancer Research UK Clinical Trials Unit (CRCTU) based at the University of Birmingham recently conducted a survey of patients and members of the public already involved with the Unit, asking for views on their experiences and thoughts for the future. The Unit has listened to the results and has set in motion changes that address the needs of current patient contributors, keeping patients and the public at the heart of their research.
Across the trials conducted by the Unit, there are already a variety of opportunities for Patient and Public Involvement and Engagement (PPIE). These activities give patients and the public the opportunity to have their say, to help prioritise and shape the research carried out, ensuring that trials are designed with patients’ best interests in mind and that findings are shared in an engaging and easy to understand way.
The survey showed that patients already involved with the Unit had a largely positive experience. They were always welcomed to meetings and had the opportunity to get involved right across the lifetime of a trial from funding application to publication, meaning there was place for their contributions from start to finish of the research. There has been a recent and intentional shift from a historic limited amount of involvement for each trial, typically for patient-facing materials such as the Patient Information Sheet and Informed Consent Form, to a broad-ranging involvement across the lifetime of a trial.
The survey results also showed that patients wanted to hear more about our research as it progresses and that they have a broad range of training needs, spanning an introduction to clinical trials to awareness of trial statistics. The Unit is now introducing a number of changes to how it engages with patients and the public, including the creation of a quarterly newsletter for PPIE representatives, making improvements to our website and running more public and patient events, ensuring meeting arrangements are better geared to patient and public needs. The Unit is developing a range of additional training options with a particular focus on the interpretation of trial results.
This survey has now been extended to members of the public to ensure that the Unit gains a broader range of views and continues to find new and relevant ways to involve and engage our patients and the public.
It is vital to include the patient and public voice when prioritising research questions, designing trials, recruiting participants and communicating with them throughout our research. Seeking perspective from people with lived experience of cancer is critical in ensuring we are doing our best for our patients.Pam Kearns, Director of the Cancer Research UK Clinical Trials Unit