Patient, carer and public involvement (PCPI)

Stroke survivors, carers and community representatives were central to the WAterS-2 project.

We developed an inclusive model of patient, carer and public involvement (PCPI) to ensure that lived experience shaped the design, delivery and dissemination of the study.

Our approach aimed not only to involve people affected by stroke, but also to improve representation – particularly of people from minoritised ethnic communities and people with communication difficulties.

Research Advisory Panel

At the heart of our model was the WAterS-2 Research Advisory Panel (RAP).

The RAP members included:

• Ann Bamford (Chair) – Lived experience of stroke.
• Rudolph Edwards – Lived experience of stroke.
• Billy Ellison – Lived experience of stroke and communication difficulties.
• Sanya Karim – Experience of caring for stroke and delivering health-related community support to South Asian communities.
• Jav Rehman – Founder of Bridging Communities and a public contributor committed to ensuring everyone’s voice is included.
• Wendy Simms – Founder of the Keeping It Real 24/7 support network for Moss Side, and a Neighbourhood Health Champion.
• Stephen Taylor – Lived experience of stroke and communication difficulties.

Members brought diverse experiences, including stroke survivors, carers and individuals with community leadership roles.

The RAP met regularly throughout the project. They were collaborators in the study, not consultees, and they contributed to:

• shaping study design and materials;
• improving accessibility and inclusive language;
• informing outcome selection and interpretation;
• contributing to reports and dissemination;
• advising on future research.

Representation in study governance

PCPI was embedded within the governance structure of WAterS-2.

The Chair of the RAP (Ann Bamford) was a member of the Study Management Group, ensuring that lived experience informed operational decisions.

The independent Study Steering Committee also included a member with lived experience of stroke and senior community leadership representation.

This structure ensured that lived experience informed both day-to-day delivery and strategic oversight.

Outreach and Community Connectors

In addition to the core RAP, we worked with wider individuals and community groups.

We carried out direct outreach to stroke support groups and community organisations to obtain feedback on specific aspects of the study.

We also worked with community connectors – trusted members of communities who support engagement from within those communities. This approach responds to concerns about researchers ‘parachuting in’ and instead supports dialogue that is trusted, culturally sensitive and sustainable.

A collaborative and evolving approach

Our model reflects a commitment to inclusivity, transparency and meaningful representation in research.

WAterS-2 has strengthened our understanding of inclusive research practice, and this learning is informing future work.