King's College London

Stroke survivors face major barriers to participating in patient and public involvement (PPI) activities and research. Stroke can affect people in multiple ways. Stroke survivors may experience difficulties with communication, understanding language, vision, mobility due to muscle weakness, and mental health.

In our work to date, stroke survivors and carers have highlighted that current PPI approaches primarily engage those with milder symptoms who can attend and speak at meetings. This means that crucial perspectives from those with more severe or diverse stroke-related experiences often go unheard. Researchers lack the tools and methods to facilitate participation from a broader range of stroke survivors, leading to an over-reliance on traditional meetings that exclude many potential contributors.

This Programme Development Grant aims to use what we know from the evidence works and combine this with new methods of getting patients and public involved, ensuring that those involved have a wide range of different stroke-related difficulties and reflect a broader range of stroke survivor experience. To do this, we will:

• Map the stroke PPI groups in England and speak to those leading stroke PPI to understand current PPI practices, consider what has been tried before and identify some of the difficulties PPI leads face in doing PPI with stroke survivors.
• Work with stroke survivors with diverse stroke-related difficulties and stroke health care professionals (e.g. speech and language therapists) to co-develop new face-to-face and digital methods and tools to enable all stroke survivors to participate in PPI and research.
• Evaluate our work using an established framework and against definitions of success.

We will share the newly developed methods and tools with the Stroke Association and NIHR as well as publicly on our dedicated website, with stroke survivors, with stroke researchers and with the wider research community, where findings can help in involving patients in PPI and research in other complex health conditions.

Findings will be presented in different formats (including in video and picture forms) on our website. We will deliver a training session at the main UK stroke conference (UK Stroke Forum), and start a Stroke PPI Network for those working in research to share knowledge, experiences and collaborate on future work to improve stroke PPI.