PPI Shared Learning Group for PhD Research 30/01/2026

Aim of the session: A PPI Problem-Solving Group Discussion. Members can anonymously submit any PPI-related challenges or issues, and the group will work together to share experiences, insights and possible solutions. We hope that it will be a supportive and practical space for tackling real-world PPI questions.

Not all advice here should be taken as fact- these notes simply reflect the advice and shared learnings within the group. For more advice, please refer to https://ppinetwork.ie/ or email ppi@ucc.ie or your local PPI Ignite office.

Problems submitted:

1. Interpreting Data with Children

“I would like to know how we can include our PPI panel in the analysis and interpretation stage of the project. For the section "What role will PPI contributors play in my analysis and interpretation stage?” my PPI strategy indicates that the PPI panel will work with the research team to interpret the data and develop themes. As my PPI panel includes children, I would like to know what experience anyone has at this stage with adults and school-aged children, and how they have included PPI contributors in data interpretation. Many thanks.”

Advice from the group

During data interpretation- Helping with Ambiguous Answers

• PPI contributors can be extremely helpful in interpreting qualitative data from interviews
• In particular, helping to understand certain answers that appear “ambiguous” to researchers
• Through their lived experience, PPI contributors can have an insight as to what interview participants can mean.
• They can often see the nuances in people’s answers and identify hidden meanings and subtler themes.

During data analysis- How to go about involving children and making the activity engaging for them.

• One member recommended leveraging existing user experience methods, such as affinity mapping, card sorting etc.
• The Pocket Universal Methods of Design book was recommended as a useful resource.
• These methods can be used and altered to make more suitable for use with children (“gamified”).
• After initial thematic analysis, themes can be made into a picture and young PPI contributors could be let regroup/sort them or even match quotes to certain themes

After data analysis- identifying important and/or missing themes

• Allowing young PPI contributors to identify themes that resonate with them, ones that should be considered as important based on their lived experience.
• They can also suggest other themes that haven’t been identified from the study but are still important to them, potentially highlighting areas for future work.
• It was suggested that different pictures could be provided to young PPI contributors and they can pick which resonate most with them.

2. Terminology Trouble

“I am reading a lot about PPI and what I have trouble with is the various terms that are used- I don't even mean the interchangeable terms internationally (PPI/PPIE/consumer involvement etc) but terms for things that are all "slightly different" to PPI, such as CBPR, citizen science, etc. I would love to know if anyone in the shared learning group may know of anyone I can speak to who can help with understanding this better.”

Some differences were discussed and summarised in the following table. Please not that terminology can vary between projects, for example, in some projects PPI contributors can set the agenda etc.