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Getting started: what is PPI?
Watch either of these presentations from our PPI Ignite @ University of Galway team, providing simple overviews of Public and Patient Involvement in Research:
Introduction to PPI (lecture presented to Masters students at University of Galway in Autumn 2018)
- What is Public and Patient Involvement in Research? Listen back to a presentation given to film makers, who were considering producing a documentary about PPI
Examples of PPI from University of Galway
PPI can be approached in many different ways. Here are presentations that give a flavour of some of the approaches:
- Irish ME/CFS Association parnter with an University of Galway health economist - Orla Ní Chomhraí and Dr John Cullinan (May 2020)
- PPI in medical device design - Siobhán Kelleher and Kathleen King (May 2020)
- PPI contributor part of a research team - Robert Joyce and Sinead Hynes (Nov 2020)
- Young adults with diabetes shaping research - an introduction to PPI from Dr Aoife Cahill, HRB, followed by a presentation on the D1 Now study, from Dr Bláthín Casey and Cameron Keighron, accessible from the HRB web site and available through the Elsevier Researcher Academy
- Can you hear me, are you listening? - Dr Helen Rochford Brennan, an advocate and a person living with dementia spoke at the annual PPI conference in University of Galway on her journey in community activism, PPI and national and international research (2019)
Check out our Case Studies for more examples.
Here are some resources to help you plan PPI in your research:
- Planning PPI template, where is there scope for involving the public or patients?
- Planning PPI- top ten Questions - questions we pose to researchers across University of Galway when beginning to think about involving PPI contributors in their research.
- Consider the different levels of involvement – the IHRF model here is a useful model to use; different levels of involvement may be appropriate at different stages within a single study, depending on a number of factors, including the nature of the research, the PPI expertise of the research team and of the PPI partners, and the time and budget available for involvement.
Many other very useful planning aids are available elsewhere, for example, an Involvement Matrix designed by Smits et al can be found here (ref: Smits, DW., van Meeteren, K., Klem, M. et al. Designing a tool to support patient and public involvement in research projects: the Involvement Matrix. Res Involv Engagem 6, 30 (2020)).
Budgeting for PPI
Best practice recommends compensating PPI contributors and patient organisations for their time and expenses as PPI research partners. Compensation rates and processes will depend on many issues (for example, total research budget, preferences of the PPI contributors, institutional processes). In this PPI Budget Calculator you will find prompts that may help you develop a budget for PPI in research. We drew on the budget calculator developed by the INVOLVE UK organisation to produce this Excel spreadsheet for researchers at University of Galway/Ireland.
Setting up a PPI group
Two helpful references on ethical considerations when planning PPI:
- Pandya-Wood, R., Barron, D.S. & Elliott, J. A framework for public involvement at the design stage of NHS health and social care research: time to develop ethically conscious standards. Res Involv Engagem 3, 6 (2017). https://doi.org/10.1186/s40900-017-0058-y
- Ní Shé, É., Cassidy, J., Davies, C. et al. Minding the gap: identifying values to enable public and patient involvement at the pre-commencement stage of research projects. Res Involv Engagem 6, 46(2020). https://doi.org/10.1186/s40900-020-00220-7
This paper outlines values underpinning any PPI activity, but be particularly cognisant of these when you are planning some PPI input as you begin to write a grant application.
You may find these helpful:
- General characteristics of a PPI group member
- Example of the mix of members that a PPI group for primary care research might include
- A sample letter of invitation for finding PPI contributors
- A sample letter of invite or advertisement that you could use when setting up a group
PPI in your PhD
At University of Galway, we offer a 5 ECTS PPI in Research module for postgraduate students. Talk to you PhD supervisor about taking this module. Email us if you for more information.
Before reading this section we advise PhD students to look at the resources in the Getting started and Planning your PPI (particularly ethical considersations) sections above.
There are particular challenges to PPI during a PhD. Our key tip is: "do a small amount of involvement well, rather than attempting to embed PPI across all parts of a PhD research study, if you are faced with limitations on time, resources and support."
Here are two recent publications on this topic.
- Dawson, S., Ruddock, A., Parmar, V. et al. Patient and public involvement in doctoral research: reflections and experiences of the PPI contributors and researcher. Res Involv Engagem 6, 23 (2020). https://doi.org/10.1186/s40900-020-00201-w
- Tomlinson, J., Medlinskiene, K., Cheong, VL. et al. Patient and public involvement in designing and conducting doctoral research: the whys and the hows. Res Involv Engagem 5, 23 (2019). https://doi.org/10.1186/s40900-019-0155-1
Public & Patient Involvment (PPI) in Research Conference
Every year since 2018, we collaborate with The HRB Primary Care Trials Network Ireland (CTNI) to host the PPI in Research Conference, where we can connect with PPI contributors, Researchers, Clinicians and interested people to highlight the developing world of Public and Patient Involvement. Click here to see our recordings of the conference.
Distinctions and blurred boundaries between qualitative approaches and public and patient involvement (PPI) in research - "PPI contributors take an active role at project level, more flexibility in roles is required in PPI research" - Ruth Mc Menamin, Jytte Isaksen, Molly Manning & Edel Tierney
Links to other PPI Ignite programme offices
Seven Universities are currently funded under the HRB-funded PPI Ignite award. You will find useful information at each of these web sites/twitter accounts: