- Case study #1: LOL-lab
- Case study #2: Developing the iKnife
- Case study #3: The Healthy Start, Happy Start Study
- Case study #4: Research priority-setting – how feasible is a festival approach?
- Case study #5: Establishing a public panel in research
- Case study #6: Evaluating a TB awareness animation
- Case study #7: Parents with experience of preterm birth help shape Imperial research
- Case study #8: Hackathons as a method for co-developing novel research tools
- Case Study #9: Inflammatory Bowel Disease (IBD) Patient Involvement in Research Day #IBDPRD
- Case Study #10: An interactive PPIE workshop on kidney transplant rejection
- Case study #11: The ALGeBRA Steering Group for breast cancer research
- Case Study #12: Using a community organizing approach to develop a Quality Strategy
- Case Study #13: How can Patient and Public Involvement improve the study design of a clinical trial?
- CASE STUDY #14: Public involvement in research that is less “public facing” – PPI and Mathematical Modelling
In conversation with: Raheelah Ahmad, NIHR Knowledge Mobilisation Fellow
Working within: NIHR Health Protection Research Unit in Infections and Antimicrobial Resistance
What did you do?
Our team (Raheelah Ahmad, Tim Rawson, Enrique Castro-Sánchez, Esmita Charani, Luke Moore and Alison Holmes) set out to explore if and how citizens would be willing to take part in setting priorities for research funding.
With the support of an Imperial Biomedical Research Centre (BRC) Public & Patient Involvement/Engagement (PPI/E) grant we tested an approach to engaging with citizens to explore how they would set research priorities in the area of infectious conditions. Members of the public were asked to allocate research funding using mock cheques and record the reason for this allocation. In this process we also wanted to know if citizens felt it was an area about which they wanted to have a say.
What were you trying to achieve?
We hoped to develop a method for easily exploring citizens’ views for strategic decision-making when allocating funding for research. We felt that this work was important as while public sources fund over 50% of research in infectious conditions, citizens are often not involved in where and how this money is spent. We wanted to develop a method which could also be used in other areas of health, and used to capture views from a large number of citizens.
Who did you involve and how did you find the right people?
We ran our main public involvement/priority-setting event at the Imperial Festival, which attracts ~15,000 visitors over a weekend. This meant we were able to reach a large and diverse audience with nearly 250 individuals actively taking part in our event. And the room we were in was visited by about 3,000 people over the weekend.
But it wasn’t just about this event, we’d involved people throughout the process too. Prior to testing our approach at the Festival, we’d got in touch with experienced patient representatives via our existing PPI panel who helped inform the early development of our approach. And after the activity, we organised three focus groups to provide an in-depth critique of the approach and our findings. For this we used a qualitative research company (Cherry Picked UK) who helped us recruit a representative group of 20 people across age, gender and employment.
Were the people you involved given any training?
Our patient representatives who worked on the project with us have previously been provided training by members of the research team. Patients and members of the public who took part in the focus group did not receive any training.
Did you achieve what you set out to do?
Yes. The public engaged with the activity and were willing to make decisions and provide their rationale. We were able to involve a large and varied audience because of the format and the venue.
What impact did it have on the people involved?
Many of the people who took part said they enjoyed this way of being involved:
“I went through and I looked at each one and worked through my own thought process of why yes or no, bearing in mind the criteria you gave. I think it’s really good because it gives you all the facts, and that’s what you need to make your mind up.”
But some did express apprehension if they were using ‘real’ rather than the mock cheques. In the focus group setting, participants valued the opportunity to explore others’ views and spend time considering some of the potential threats that impact human health globally.
As for the researchers, we really enjoyed the project and always find discussions with citizens to be critically important in grounding our work and helping to re-assess ‘what matters most’. It was particularly helpful to get the diversity of citizens in the focus groups because the BRC PPI/E grant aligned well with ongoing public involvement and engagement within the unit.
What was the most challenging part of doing PPI and how did you overcome it?
Recruitment for focus groups is always challenging as it requires a longer time commitment than other methods. We were fortunate that we were able to get support from Cherry Picked UK – thanks to the funding provided by the Imperial BRC – which assured a representative group could be accessed.
What advice would you give others interested in doing something like this?
Public involvement is most productive not as a one-off activity, but when it’s part of the whole research cycle of a project, or more broadly, that of a research unit. Our learning from our PPI activities has helped us to reflect both on our roles as knowledge mobilisers with citizens and other key stakeholders, and on our pathways to impact throughout the stages of our project.
So, what’s next?
We are really excited that this work has been published in Health Expectations allowing thorough peer review and visibility to a wider audience. One of our Unit’s experienced PPI panel members assisted with, and was named as an author on this publication.
Our next steps are to revise the approach based on the feedback we received and assess its applicability beyond infection. We are also interested in using the approach with a number of sub-groups such as school children or adults with different socio-economic and educational backgrounds to see how the results vary.