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

TL;DR

This paper describes how a UK clinical trials unit partnered with patients to design and implement a strategic plan for patient and public involvement, showing how such collaboration can be sustained and effective.

Contribution

The paper presents a replicable framework for embedding patient and public involvement at the strategic level in clinical research organizations.

Findings

Collaborative annual implementation plans with PPI representatives led to 12 fully achieved activities in 2024/25.

PPI representatives led three activities and contributed to training sessions and a podcast, enhancing engagement and transparency.

Challenges included delays in finalizing templates due to internal reviews, highlighting the need for efficient processes.

Abstract

Clinical Trials Units (CTUs) in the UK are required to integrate patient and public involvement (PPI) into their research and operational strategies to meet national standards and registration criteria. While PPI in individual clinical trials is increasingly documented, strategic-level involvement within CTUs remains underreported. The Medical Research Council Clinical Trials Unit (MRC CTU) at University College London (UCL) has embedded PPI across its organisational strategy, partnering with PPI representatives to co-develop and deliver annual PPI implementation plans aligned with a five-year communications strategy.

Since 2016 the MRC CTU at UCL has collaborated with its PPI Group, made up of staff and PPI representatives, to design and execute annual implementation plans that operationalise strategic PPI objectives. The 2024/25 plan included 18 activities, ranging from training and guidance development to evaluation and dissemination. All activities involved PPI representatives, with three led by them. Progress was monitored through predefined indicators and discussed in quarterly meetings. By year-end, 12 activities were fully achieved, five were underway, and one was postponed. Notable successes included high satisfaction with training sessions and the release of a podcast featuring PPI members. Challenges included delays in finalising a new participant information sheet template as a result of extensive internal review. The introduction of role descriptions for PPI representatives improved transparency and engagement for all parties.

The MRC CTU at UCL’s strategic, co-designed approach to PPI fosters genuine partnership and integration of public involvement across the Unit. Annual implementation plans, collaboratively developed and evaluated, ensure alignment with long-term objectives and responsiveness to challenges. This model demonstrates how sustained, cross-cutting PPI can be effectively embedded in research infrastructure, contingent on core funding support. The approach offers a replicable framework for other CTUs aiming to enhance the impact of their strategic PPI.

Not applicable.

The online version contains supplementary material available at 10.1186/s40900-026-00851-2.

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.

The online version contains supplementary material available at 10.1186/s40900-026-00851-2.