PUBLIC
INVOLVEMENT
Get Involved with AI MULTIPLY
Our ultimate aim is to develop new AI techniques that will help doctors to provide more personalised, effective, and equitable healthcare for people with multiple long-term health conditions.
Our Mission
Using the collective expertise of patients, clinicians, researchers and artificial intelligence to improve the care of people who live with many health conditions and medicines
WHO WE ARE
We are a group with a broad representation from contributors with a range of PPIE experience.
We are people with lived experience of different long term conditions, carers and diversity of age, gender, ethnicity, socioeconomic status, disability and geographical location, to ensure that we have as much diversity of opinion and experiences to support the project.
Our groups involve the following:
We established a group of 5 people who lead on the PPIE plans and activities.
Olivia Grant, PPIE co-lead, was involved with the project from the initial discussions. Sue Mountain and Fiona Cammack joined her to support the funding application and Victoria Bartle and David Taylor joined post funding. Alex Thompson was later attached to the PPIE work stream to lead on the evaluation of the PPIE.
This group meets regularly to discuss the progress of the PPIE within AI-Multiply, decide on plans for involvement activities, complete reporting both internal and external and review and improve sessions for the researchers and the PPIE contributors.
This group also provides representation at all of the study management meetings, the full team meetings and the steering group meetings, ensuring that PPIE remains a focus of the project and is involved in its governance and oversight.
We recruited a large group of people (30) living with MLTCs and their carers to create the PPIE group for AI-Multiply. Having a group this large meant that we have had to think about how we deliver the sessions with the researchers, and how we involve ourselves in the management and oversight of the study.
From our large group of 30 contributors we have established a smaller group of 10 core members who support the management team by providing broader opinions and input into specific topics, collating feedback for the researchers from meetings and reviewing and supporting the continual improvement of the PPIE delivery.
When we have researchers delivering to the entire PPIE group we split up the sessions into 3 smaller meetings so that everyone can have an opportunity to be involved. This also gives people the option of when to join as the 3 meetings are all on different days and times, supporting inclusion.
wHAT WE HAVE ACHIEVED
The goal for the PPIE within this project has always been to have members of the public fully embedded within all aspects of the study. When the public co-applicants were first discussing how they wanted the PPIE to look they were aiming for a subverted power dynamic from what is typically seen in research.
“PPIE is valued by NIHR and researchers, but we were clear from the outset that the research had to be fully informed by PPIE members, thus we had to create a structure that fully enabled it. In essence, in addition to researcher led meetings, we wanted PPIE members to devise and hold meetings to which researchers were invited. There was support from this from the outset and this has been maintained throughout our work so far.” – Olivia Grant PPIE co-applicant
We wanted to ensure that the voices of people with lived experience of Multiple Long Term Conditions (MLTC’s) either through having MLTC’s themselves, or as carers to those with them (and in some instances both) were heard all of the way through this project keeping the focus on ultimate patient benefit.
specific involvement in project areas
In order to fully embed PPIE within this study our contributors also attend various meetings that PPIE contributors would not usually be included in, these are:
2 public contributors attend these meetings to see what the research team are working on with the data, how they are doing it and are able to provide input and advice to ensure that the focus is always on relevant lived experience of people with MLTC’s and focus on patient benefit.
Work packages 3 and 5 have meetings to discuss how they want to use the data, what they can and can’t do with it and what questions are going to be asked. Each of these meetings has 2 public contributors attending and they provide input into their work to keep the focus on the patient.
Usually it is the work package leads who speak to the PPIE group within a project, and we have done that with each WP lead presenting to the group and us feeding back on their work. However, we have AI modellers, data engineers, qualitative and quantitative and social and behavioural researchers on the team. Some of them have little or no previous PPIE experience and had concerns with how to communicate what they are doing to a public audience. We also wanted to know about and understand what they were doing and how we could input into their work.
We have established fortnightly informal meetings with the PPIE group to discuss their work. This has been a hugely successful part of the PPIE and supports the researchers by developing their communication and PPIE skills, as well as ensuring that their work remains patient focused. The public contributors can attend if they are free and the researchers can work with the PPIE management team before their session if they have any concerns. We gather feedback from the researcher and contributors to benefit their personal development, add to our PPIE evaluation and identify potential areas for future involvement.
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Overview of evaluation plans
We have employed a mixed methods approach to document PPIE involvement within AI-Multiply including: an impact log, a qualitative and quantitative survey based on the CUBE Framework, elements of the PiiAF Framework, and PPIE session feedback documents.
We are analysing this data using a ‘follow a thread’ approach to identify and integrate key issues and challenges from across each data source. This data will be supplemented with one-to-one interviews with work package researchers and PPIE members to enhance our understanding of the impact and process of public involvement across the project.
The findings will form guidance and publications outlining how best to implement PPIE within similar large AI and big data projects and highlighting any barriers and issues that we have encountered.
NEWS & EVENTS
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