PPI resources

Getting started: what is PPI?

Watch either of these presentations from our PPI Ignite @ NUI Galway team, providing simple overviews of Public and Patient Involvement in Research:

• Introduction to PPI (lecture presented to Masters students at NUI 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 NUI 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 NUI 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 NUI Galway on her journey in community activism, PPI and national and international research (2019) 

Check out our Case Studies for more examples. 

Planning PPI

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 NUI 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 NUI 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 invite or advertisement that you could use when setting up a group 

PPI in your PhD 

At NUI 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

Sixth National Public & Patient Involvment (PPI) in Research Conference

Our playlist from the 6^th Annual PPI Conference in Research is up on our youtube page. It includes presentations on;

Doing my bit: One patient’s experience of PPI  

Embedding PPI in medical device development in Ireland

PPI Contributor panel: my voice shaping research

Learning from young adults in prison

Development of an ‘Aphasia-Accessible Patient Research Experience Survey’ through coproduction with multiple stakeholders

Working with consumers and other stakeholders on the Danish island of Bornholm

Involving families in the design of cancer services: from Belfast to Hanoi

PPI in PhD Research - BRCA Alterations in the Irish Health Care System

Our Involvement with the My Comrade Plus Study

Towards excellence in research in Ireland: the PPI Ignite Network

The full conference with Q&As can be watched here also.

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:

• DCU PPI Ignite  
• RCSI PPI Ignite 
• TCD PPI Ignite
• UCC PPI Ignite
• UCD PPI Ignite
• UL PPI  Ignite