Louise is one of our Super Research Advisory Group members and created a diagram to illustrate how patients, carers and members of the public can be meaningfully involved in research studies at every stage of the process.
Inspiration and insight
“There are a lot of resources out there on PPIE, but the vast majority of them are written by researchers and PPIE staff. There also aren’t enough visual tools, but as an artist and graphic designer, I really believe that they can be powerful ways of communicating key concepts in a clear and concise manner.
The diagram draws on my observations and experiences of contributing to research for over 10 years now, as a patient, carer, member of the public, and person who comes from multiple disadvantaged backgrounds (e.g. ethnic minority, LGBT+, autistic). It has a level of detail that I have not seen in other research cycle diagrams.”
“I basically made a list of all the activities that people can be involved in and provide valuable input to, including those that aren’t immediately obvious. After incorporating them into a diagram, I showed it to a regional research organisation whom I do PPIE work for (ARC West) and they were very supportive of my idea. The staff team there gave feedback, as did their other Public Contributors.
I also shared it online with some more members of the public, including those who are from marginalised groups within society, refining it according to their comments and suggestions. Whilst none of them required major changes, they all helped to ensure the diagram was as good as it could be in terms of clarity, accessibility and phrasing. A lot of experimentation was needed to get it right. This final version was the ninth iteration!
Accessibility considerations and support from the research community
I also looked up various things such as accessibility guides (e.g. the colours are specifically selected to be neurodivergence-friendly) and consulted a senior graphic designer at ARC OxTV, who gave it his seal of approval. Dr Rudolf Cardinal from DATAMIND and a couple of other contacts then advised on Creative Commons licensing, leading to the final result, which is easily shareable by anyone who might find it useful in their research work.
Due to my enthusiasm for autism research, I contacted various researchers in that field as well and they all generously offered to circulate it when it was ready. It was daunting to reach out but they were so welcoming. Of course, DATAMIND was another place who were very supportive of my diagram! The University of York and University of Bristol’s medical school were similarly receptive.
I’d therefore like to emphasise that without the support of others, both formally and informally, I would not have had the confidence to lead on and create this piece of work. It also would not have had the phenomenal impact that it did, once published. Behind the diagram is a wonderful, diverse group of people who all share a passion for research that changes lives.”
Louise published the diagram in July 2023 via her Twitter account of 70 followers, with it going viral and gaining almost 30,000 views on the first day. It was liked and retweeted by researchers from universities all over the UK as well as around the world, who intended to use it in their teaching and research practices. She was also invited to several speaking engagements around the UK in the autumn. She really hopes the diagram will help researchers to more easily think about how to embed PPIE in their work, and all the benefits that this brings.