Research with, not on

From co-production to quiet listening, a two-part podcast explores how patient and public involvement is transforming the way health and social care research is done – and why that transformation isn’t always easy.

In a world where health research is often perceived as something done to people, a new two-part podcast episode on the Oxford Brookes Unscripted Podcast Series asks what it means to do research with people instead.

In "Research With, Not On", Professor Jo Brett, an expert in patient and public involvement (PPI) and Dr Georgia Cook, a researcher experienced in PPI, joins colleagues Dr Jenny Seddon, Dr Lucy McGeagh, and Dr Fiona Matley to reflect on how lived experience can shape better research - and how hard it can be to do it well.

The series, part of the university’s growing public engagement efforts, opens with an invitation to rethink traditional hierarchies in research. “It’s not about consultation,” says Jo. “It’s about collaboration. About valuing people’s experience on equal terms with academic expertise.”

Across both episodes, the researchers share honest accounts of their own involvement journeys. From cancer recovery to medication withdrawal, the projects they discuss reveal the emotional depth and ethical complexity of working alongside people with lived experience.

In the first episode, the focus is on why involvement matters: how working with patients and the public can lead to more relevant research questions, richer data, and ultimately, more impactful outcomes. “People bring a perspective that you simply can’t replicate from within academia,” says Jenny.

But the second episode moves into more difficult territory - the how. The team talk candidly about the pressures of inclusive practice, the labour of maintaining trust, and what happens when involvement is done superficially. “You can’t just say ‘we consulted’ and move on,” reflects Lucy. “It’s about relationships - and that takes time.”

The podcast avoids neat conclusions. Instead, it offers listeners a thoughtful, grounded window into the lived reality of co-production: the compromises, the tensions, the learning curves, and the moments of real connection.

In a sector increasingly aware of the need for transparency, trust, and community engagement, Research With, Not On is both timely and necessary. It’s a reminder that when it comes to health and care, those who are most affected by research often have the most to contribute to it.