PPIE in
AI-MULTIPLY
Our aim was:
To be involved in the development of AI models and the data analysis completed by the research team to support explainability and trustworthiness for the general public, who can be sceptical of AI being used in healthcare.
There were a number of barriers to achieving this and we have addressed these in a variety of ways including the use of Forum Theatre.
We see creative methods as being an additional way of including a variety of voices in research, making PPIE more accessible and inclusive whilst still impacting the research.
The research question
We aimed to explore whether Public and Patient Involvement and Engagement (PPIE) in AI and big data projects differs from PPIE in other types of research, and whether living with Multiple Long-Term Conditions (MLTCs) creates additional barriers to meaningful involvement.
We conducted qualitative interviews with members of the research team and the project’s PPIE management group. Participants reported that they enjoyed, and felt they benefited from, the co-production approach to PPIE used in AI-MULTIPLY. However, we found it challenging to clearly articulate and quantify how and why this approach was effective.
PPIE contributors were involved in all meetings and all aspects of the study. This level of involvement is unusual in most research, and particularly rare in AI and big data projects. Reasons for this typically include:
- Concerns about burdening PPIE contributors with complex or technical topics
- Limited time, resources, or accessible language to explain AI development and data engineering processes
- A lack of experience with PPIE among AI and big data researchers
Through this work, we wanted to demonstrate how barriers between researchers and PPIE contributors can be identified, addressed, and actively mitigated, as we have done within AI-MULTIPLY.
Why a collaboration?
We decided to collaborate with the Lawnmowers theatre group for a number reasons:
- People with Learning Disabilities are highly likely to have MLTC’s and we did not have representation within our existing PPIE group.
- AI and big data research can be off putting even to experienced PPIE contributors.
- Lawnmowers have experience of using Forum Theatre in a variety of research projects.
- The PPIE work that we have done in AI-MULTIPLY has inspired us all and we wanted to highlight and share this in an accessible and engaging format
Theatre of the oppressed
Theatre of the oppressed was created by Augusto Boal who wanted to amplify the voices of people unable to effect change alone.
It has been used in research as a creative methodology to highlight inequalities and challenges within healthcare services.
Forum theatre, an aspect of Theatre of the oppressed, is an interactive process where the audience become “spect-actors” and take over roles in the scenes being “Forumed” to add insight and personal experience.
These interactions are the data that we collected from the performances to use as recommendations for future research.
Why use Forum Theatre?
A key benefit of Forum Theatre was the ability to involve both the research team and PPIE contributors. This helped ensure the resulting piece was representative of the whole study community, rather than focused solely on PPIE contributors. It included clinicians, data scientists, project managers, and other research disciplines involved in the project.
Forum Theatre creates a safe, participatory space in which people with MLTCs can share lived experiences, challenge power imbalances, and collectively explore alternative ways of engaging with AI research, a field that is often abstract and expert-driven. By making complex issues tangible, it opens up meaningful dialogue between contributors and researchers.
Importantly, Forum Theatre places all participants on an equal footing and supports the identification of issues, discussion of challenges, and co-creation of solutions in a safe and creative environment.
What we did
Stage one
We held online workshops with the AI MULTIPLY PPIE group, research team and Lawnmowers actors.
- This gave us stories to use for the play.
- The lived experience of people living with MLTC’s, carers, clinicians, data engineers, project managers, qualitative researchers and AI modellers.
- These stories were important, heartfelt and highly emotive
Stage two
We, (the Lawnmowers actors and AI-MULTIPLY PPIE contributors who became “AI actors” in the performance), spent a week working on the script. This created many challenges:
Emotional
- Which stories to include and exclude – everyone’s experience was important but we only needed some to make the play
Research Question
- What are we trying to highlight from the play? What do we want the impact to be?
Logistics
- Creating a play in a week was a very tight timescale
- Actors and PPIE contributors all have MLTC’s and cannot work full time, and have other commitments, so very few managed the full week
Experience
- Lawnmowers were experienced in creating awareness raising pieces and this was different
- AI-MULTIPLY PPIE contributors wanted to be involved, but we had very little acting experience and no understanding of Theatre of the Oppressed which had to be taught
- Lawnmowers hadn’t worked with other PPIE contributors before, researchers had led previous work
Delivery
The play was performed and filmed at Newcastle University on 26th Sept 2025.
We Forumed scene 3 which was our “bad” PPIE meeting with the audience.
The recording was presented and scene 3 Forumed again with our PPIE group and the Social Action for Health PPIE group Oct 2025
We presented the Forum Theatre work at the Creative Methods Conference Sept 25 and Innovation Observatory conference Nov 25
We also delivered an AI-MULTIPLY PPIE meeting in a hidden scene.
This does not fit with the Theatre of the oppressed format and so we separated it from the final show.
We wanted to present some improvements that we had already implemented within the AI-MULTIPLY PPIE meetings and not leave the audience feeling that all PPIE meetings were as inaccessible as the one shown in scene 3. That is definitely a “worst case scenario” used for dramatic purposes.
Our hidden scene highlights the simplicity of improving accessibility and inclusion, as well as creating prompts for further improvements within PPIE delivery once shown to the audiences after our Forum sessions.
What we gained from the work
- Increased recognition of how invested PPIE contributors are in research
- Greater awareness of the daily challenges of living with MLTCs and how these affect research involvement
- Researchers and public contributors experienced the benefits of creative methods in research
- Best-practice ideas for delivering inclusive and effective PPIE meetings were shared
- Videos of the Forum Theatre performance are available on our website, alongside a commentary explaining the process
- A paper will be written to communicate the findings from the Forum Theatre sessions
- Development of a Legislative Theatre piece to influence change in PPIE practice, informed by our findings and recommendations
- All data from the Forum sessions is being analysed to work into a paper highlighting our process and identifying recommendations for creating and delivering accessible and impactful PPIE in AI and big data research.
