Shaped by patients and the public

When ARC OxTV launched in 2019, it made the same commitment as every NIHR-funded programme: patients and the public would be involved in shaping the work. Six public contributors – known as PPI Champions – were recruited to sit within the ARC's research themes. They attended meetings. They were welcomed warmly. But the role itself was undefined, the group was small and homogeneous, and nobody – researchers or public contributors – was entirely sure what meaningful involvement looked like in practice.

"I never thought that one day I would be devising and co-leading a research project," wrote Mary Zacaroli, one of the original PPI Champions. "In fact, it took a while to understand why I was there."

That uncertainty was not unusual. Research organisations routinely commit to public involvement without building the infrastructure to make it work. The ARC's early PPI followed a familiar pattern: present at the beginning and end of projects, largely absent from the middle, and disconnected from governance decisions about what the ARC should prioritise and how it should spend its money. But the ARC did something less common. It asked its public contributors what needed to change – and then acted on the answer.

What the 2022 review changed

A frank internal review in 2022, initiated by the PPI Champions themselves, laid bare the gap between aspiration and practice. The Champions' roles lacked clarity. Cross-theme learning was siloed. Researchers valued public involvement in principle but lacked time, confidence, or structured support to do it well.

What followed was not a policy rewrite. It was a structural shift in who held power.

The PPI Champions group doubled from six to thirteen members, recruited deliberately for diversity of ethnicity, geography, lived experience, and connection to seldom-heard communities. For the first time, the group elected a public chair. Working groups – eleven over the life of the ARC – took on substantial tasks: co-designing recruitment processes, developing a PPI monitoring framework, reviewing every governance document, contributing to the ARC's funding renewal, and leading the evaluation you can now read in full.

PPI Champions gained seats on the Strategy Board, where they shifted the conversation from contractual reporting to a harder question: so what does this research actually mean for people? That challenge led directly to the impact case studies published across this collection.

What it produced

The effects showed up in the research itself. When Mary Zacaroli's relationship with her theme's researchers deepened over several years, it led to a jointly designed pilot study testing Moodscope cards as an accessible alternative to standard outcome measures in community settings – research conceived by a public contributor, not merely informed by one.

When PPI Champion Sally Crowe was assigned to the ARC's most technical theme – statisticians and health economists whose work on prediction models and economic evaluation seemed impervious to public involvement – she did not try to force a conventional PPI model onto unconventional research. Instead, she ran workshops that created space for researchers to discuss honestly where public input added value and where it did not, then piloted monthly PPI surgeries where researchers brought specific problems to work through with public contributors. The result was not universal PPI adoption. It was something more useful: a shared, evidence-informed understanding of where and how public perspectives could strengthen methodological research.

Across the ARC, a co-designed "Monitoring to Learn" process – piloted in eleven research projects – captured concrete examples of public involvement changing study design, refining interventions, improving the accessibility of outputs, and opening conversations about ethics and data use that researchers had not previously had with the communities affected.

What carries forward

The ARC's PPI review, led entirely by public contributors, distilled seven years of learning into six findings that now form the foundation for ARC Thames Valley's approach: partnership working built on genuine power-sharing; safe, non-judgemental spaces where both researchers and public contributors can be honest about what is and isn't working; approaches tailored to the community being involved rather than applied formulaically; recognition that goes beyond payment to include personal development and meaningful activity; and local PPI infrastructure that outlasts any individual relationship.

None of this happened quickly. The Champions who joined in 2019 spent years building the relationships and credibility that made the post-2022 transformation possible. The newer members, recruited into a more structured and supported environment, brought fresh perspectives that accelerated it. Both groups report that the experience changed how they see their own expertise – and how the researchers around them see it too.

The full review, written and led by the PPI Champions, is available as a downloadable report. It is intended as a practical resource for any research organisation building public involvement into its governance – not as a model to copy, but as an honest account of what worked, what didn't, and what it took to move from one to the other.

Download the full PPI review report (PDF)