HDR UK Wales news. Published 02/04/2025
Jack Palmer (HDR UK Wales Co-Production Officer) and Claire Newman (HDR UK Wales PPI Lead) both recently travelled to London to attend an HDR UK strategy day for Patient and Public Involvement and Engagement (PPIE) leads from across all of the network’s driver programmes and regions. In this blog, they reflect on discussions about developing a toolkit and the importance of good PPIE in successful data-driven research.
Jack’s thoughts:
Claire and I firmly believe that research directed, developed, and delivered with the people it is intended to benefit is more relevant, effective, and impactful.
It was brilliant to meet like-minded specialists from across the UK in the (huge!) Wellcome Trust building in London to discuss the creation of a toolkit aimed at helping PPIE specialists and researchers work together to strategically plan involvement in research.
Something which struck me was that it quickly became clear that no two people attending had the same job title, role, or specialism. Everyone was working in different contexts and at different levels, and this reflects how doing PPIE can’t be just one person’s responsibility or can be delivered in a set way. However, PPIE specialists have a role in helping other researchers feel confident in taking shared responsibility for PPIE and meeting expectations set out in guidance like the UK Standards for Public Involvement, or more specific to the work of HDR UK, the Public Engagement in Data Research Initiative (PEDRI) Good Practice Standards.
We agreed that a toolkit, therefore, needs to be adaptable for projects that are diverse in scale, methodology and resources. We also discussed how, while the research community understands the importance of jargon-busting and plain language for public partners, we’re not very good at giving one another the same treatment, which might mean PPIE seems mysterious or difficult to those with little experience of it. In truth, the most important thing is understanding the principles and values of why PPIE is needed, and the practical side can be worked through step-by-step with the help of a toolkit such as the one being developed.
It was a really inspiring experience discussing how the toolkit could help address a range of typical challenges with colleagues, and I’m looking forward to seeing how this piece of work, which is being led by the central HDR UK PPIE team, progresses.
Claire’s thoughts:
I came away from the day energised and motivated by hearing everyone’s experiences, successes, and challenges in being involved in public and patient involvement and engagement (PPIE) in research, especially using data linkage.
It was really great to meet and connect with like-minded individuals who want to embed PPIE in data research, discussing what could be ‘best practice’ developing strategies and how we can share our success stories. We hope to bring all our shared experience and knowledge together to create a ‘toolkit’ we can use, share, and continue to shape over time.
