Project 817 | SHaRe Together: Shaping Health Research Together – Collaborating with Cysters and researchers to put lived experience first

This collaboration aims to support researchers to explore research questions grounded in lived experience. By working directly with people who use healthcare services in developing research questions, the project will ensure future research is relevant, inclusive, and focused on real-world needs.
The work will focus on how research studies can design Patient and Public Involvement and Engagement (PPIE) in ways that are accessible and inclusive, particularly for groups often under-represented in research, including people who are currently healthy but may use healthcare services in the future.

Approach

A workshop will be co-designed and delivered with Cysters, bringing together University of Nottingham researchers with people who have lived experience of using the UK healthcare system. It will encourage open discussion, shared learning, and practical understanding of inclusive research practice.
The workshop will include three main components:
An introduction to the work of Cysters, helping researchers understand the communities involved and the value of lived experience expertise.
Short introductions from researchers about their interests, followed by focused questions to hear the views of lived experience experts. Topic areas will be shared in advance to support preparation and participation.
A facilitated craft-based activity designed to model a high-quality PPIE session, giving researchers first-hand experience of inclusive, well-run PPIE and supporting future primary care research planning.

Patient and Public Involvement and Engagement (PPIE)

PPIE is central to this activity. People with lived experience will be involved as active partners rather than passive contributors. The workshop, designed with Neelam (Cysters), aims to reduce power imbalances and support meaningful, accessible participation. Researchers will gain practical insight into how to involve PPIE in respectful and effective ways.

Inclusion and addressing health inequalities

Cysters will recruit local people with experience of using UK healthcare services, focusing on those often underserved by both healthcare and research. This includes people who face language barriers, live with long-term physical or mental health conditions, or find medical information difficult to understand. This approach supports SPCR’s commitment to reducing health inequalities and broadening participation in research.