Demystifying Patient and Public Involvement and Engagement in health data research: early lessons from a framework approach


Session chair:

  • Fiona McKenzie, Human-Centred Health

Contributors / presenters:

  • Olivia Ross-Hurst, Programme Officer, The Health Foundation
  • Lynn Laidlaw, Patient Partner working with The Health Foundation
  • Dr Magdalena Rzewuska, Research Fellow, University of Aberdeen
  • William Ball, Research Fellow, University of Aberdeen
  • Alan Johnstone, Public Contributor working with NHS Grampian / University of Aberdeen
  • Norman Deans, Public Contributor working with NHS Grampian / University of Aberdeen
  • Joanna Dundon, National Clinical Informatics Lead - Public, Digital Health and Care Wales
  • Claire Newman, Public Engagement Officer, Swansea University
  • Lesley Bethell, Chair of Compassionate Cymru
  • Dot Williams, Patient Partner working with Swansea University

We want to answer as many questions about patient and public involvement and engagement as we can during this session. If you have specific questions or topics you would like covered, please add them in advance to our online question board (event number: 080721).

This interactive session aims to demystify patient and public involvement and engagement (PPIE) and grow attendees’ confidence in applying learning to their own PPIE efforts. Emphasising a discussion-oriented approach, participants will hear from staff and patient partners about their PPIE journeys, approaches, and experience and have the opportunity to question and discuss these lessons in a more informal and conversational setting.

Participants will hear early lessons from the journey to develop and embed PPIE in the work of a health services research team. Speakers will specifically discuss:

  • PPIE journey: how it started, how it’s going, aims and desired outcomes
  • Partnering with patients, carers and public: how to do well, pitfalls, what it feels like, lessons
  • Speakers will use examples to explore the first 12 months of using the PPIE framework

The workshop will then split into two breakout rooms to hear about embedding patient and public involvement in a specific programme. The Networked Data Lab is a collaborative network of advanced analytical teams across the UK working together on shared challenges and promoting the use of analytics in improving health and social care. Meaningful PPIE sits at the heart of this programme. The two sites will talk about and explore with attendees:

  • Where local partners started (their original plans, priorities, values, assumptions)
  • Who to involve, in what? (whom, why and how patient partners were found)
  • What do patient partners do? (role and responsibilities; contribution at each stage of the project)
  • What changed because of patient and public involvement and engagement?

The whole group will come back together to hear final top tips for developing PPIE in health research from all speakers.