INVOLVE is a National Advisory Group and part of the UK’s National Institute for Health Research. For over 20 years, this government-funded organisation has been providing advice and resources to support public involvement in health and social care research. INVOLVE is taking an ambitious approach to piloting the Patient Engagement Quality Guidance (PEQG), as Paula Wray, Senior Public Involvement Manager at INVOLVE explains.
We are using the Patient Engagement (PE) Quality Guidance in a way that’s different from other pilots. Instead of applying the Guidance to one particular project we are using it to assess the whole INVOLVE organisation. We felt it was important to take on this challenge and pressure test the PE Quality Guidance – if we are asking others to use it, we should walk the walk by adopting and implementing the tool ourselves.
Although the tool was developed to facilitate PE in medicines development, we are looking at how it works in the applied health and social care research setting, which will also demonstrate how the guidance can be adapted to different situations. We developed the UK standards for patient involvement that were a starting point for the PE Quality Guidance. So, for us, it’s also about evaluating alignment and seeing if the tool can be used to help individuals or organisations monitor and measure how they are implementing the UK Public Involvement standards.
Getting involved with PFMD to develop the PE Quality Guidance helped us to accelerate INVOLVE’s efforts towards the shared goal of more meaningful and consistent PE. If we want to achieve this goal, we need to build the evidence base and find a structured and systematic way of sharing learnings. There are lots of great initiatives out there but little is documented. That’s where the guidance adds real value by enabling you to capture and reflect on your PE activities, set targets, see what works and why and also identify areas for improvement.
The Book of Good Practices complements the guidance and can be used as a matchmaking tool. It allows you to connect with groups or individuals working on relevant or similar projects, providing a richness and granularity to PE efforts that can’t be achieved by working in silos. This network of collaboration is one of the strengths of PFMD – it keeps the momentum and passion alive to drive projects forward to delivery.
As well as applying the PE Quality Guidance across INVOLVE, we are working with public contributors to do the same thing from their ‘lay’ perspective, so that we have a 360-degree stakeholder view of our PE activity and processes. I think this triangulation and sense-check are critically important if we want to be applicable to patients – and that’s our mission.