Author: Dr Julie Williams (IDEAS-NET Research Fellow)
Contact: julie3.williams@northumbria.ac.uk
How do research teams make sure they do meaningful and non-tokenistic PPIE? Here in the IDEAS team, as we start our Patient and Public Involvement and engagement (PPIE) work, we’ve been thinking a lot about how we involve people in our evaluation work equitably and ethically.
So, it was good timing to attend training on developing and evaluating complex interventions hosted by the University of Glasgow, and two conferences, the UK Evaluation Society conference, also in Glasgow, and the European Implementation Event in Newcastle. The training was focused around the Framework for developing and evaluating complex interventions updated in 2021 which has engaging stakeholders as one of its core elements. The conferences had a different emphasis – UKES on evaluation and EIC on implementation, but PPIE was a key focus at both.
The training highlighted the importance of involving all stakeholders including the public and patients and outlined some of the reasons why this was important which included understanding different perspectives on any one ‘problem’ and helping to understand what needs to be evaluated and how. These will be key to us at IDEAS as we undertake any evaluation.
Both conferences included presentations and discussions on PPIE and were often focused on how to do it rather then why to do it. I want to focus on one presentation from UKES and one panel session from EIE to give some sense of different ways of approaching PPIE.
Video: Measuring Humanity. Find our more about their REALITIES project.
At the UKES many presentations and keynotes talked about PPIE. In one panel session titled ‘Participation or Pretence’ there was a robust debate about how to make PPIE inclusive and non-tokenistic. The panel ended with showing a video called Dear Human which was developed as part of the Measuring Humanity project which has the aim of measuring health and inequalities through connectivity and creativity, and was featured in a Lancet article.
At the EIE conference they had a Public Involvement and Community Engagement (PICE) committee who oversaw all aspects of the conference to make sure it was inclusive-I’ve not seen this before at a conference and I hope that other conferences begin to do this too. I would love to know what was changed due to their work.
Image: European Implementation Event 2025
This committee, that included two people with disabilities, also ran a workshop titled ‘Hard to reach? How hard are you trying?’ which was a really thought-provoking interactive session on what is needed for PPIE to be inclusive and why this is important. They used this cartoon and asked us to make sure they didn’t just get bums and feet, a striking way to illustrate the importance of inclusive PPIE. So, for all of us working in PPIE, how do we make sure people get faces, and not bums and feet?
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