Walking the walk: a case study of partnering with patients in designing and delivering a patient and public involvement implementation plan

This paper explores how patients are involved in decision-making at a strategic level in an academic clinical trials unit. It looks at how working together with patients helps the unit achieve its broader goals for patient and public involvement (PPI) beyond individual trials, and how working together supports the unit’s communications strategy. It also looks at how patients help track progress and judge results. The Medical Research Council Clinical Trials Unit at University College London is a large academic clinical trials unit delivering studies in cancer, infectious diseases and neurodegenerative diseases in and beyond the UK. For over twenty years it has involved patients in its research, starting with individual studies and gradually expanding to other areas like reviewing trial protocols. In 2016 the PPI group (made up of staff and PPI members) started to design and deliver annual plans to embed PPI in all the unit’s activities beyond the trials themselves. The 2024-25 unit PPI implementation plan had 18 activities, including training, writing guidance and sharing knowledge. PPI members were involved in all activities, and led three of them. The PPI group measured how well the plan was put into practice. This paper describes a model for long-lasting PPI that is built in effectively to the research organisation. It offers a framework for other CTUs aiming to enhance the value of their strategic PPI, and for PPI members seeking to widen their influence and involvement.