Stephanie Tierney, Shoba Dawson, Opeyemi Babatunde, Gillian Richards, Amadea Turk, Anne-Marie Boylan
Patient and public involvement (PPI) in research has become more prominent in recent years. However, research does not always involve a diverse range of PPI contributors. The importance of capturing diversity among PPI contributors has been raised in the National Institute for Health Research’s ‘Going the Extra Mile’ report.
Background to the project
We are part of the Evidence Synthesis Working Group, a collaboration of researchers from across the School for Primary Care Research with an interest in different ways of synthesising existing data to answer clinical and policy related questions. We wanted to ensure that future reviews we produced reflected the concerns and priorities of seldom heard groups in society. Our team also comprised of a PPI contributor (GR) who joined us to develop the proposal on which the project described below was based. We were successful in obtaining an award to undertake this project. We decided to experiment using art and involved individuals from the following groups:
- People living with dementia (Oxford)
- People of South Asian origin (Bristol)
- People with co-morbid physical and mental health problems (Keele)
Our aim was to bring people together to talk about their health/care needs, experiences of services, and to produce some priorities for research. We intended to identify a young artist from each area to create a piece of artwork that reflected each group’s discussion.
Working with young artists
We sent out invitations via local contacts to find young people with a talent in art to assist us with this project. We asked potential artists to share their work with us. If we were happy with their skills, we met them in person or by phone to talk about the project. We gave them time to think about the commitment and how it would fit with their studies before they agreed to undertake the work. Two young artists (aged 17 and 19) were commissioned to produce the artworks (one produced two as we struggled to find a third individual). They were provided with art materials, £50 for their contribution to the project, and their travel expenses were reimbursed.
The artists were enthusiastic about their involvement in the project; they responded to emails promptly, attended meetings, provided us with updates, asked for guidance or feedback, and produced the artwork in a timely manner. We ensured they were aware of what was expected from the outset.
Working with local groups
The group involved in Bristol, consisting of 11 women from South Asian background, was one that the lead researcher for that area (Dawson) had worked with previously. Hence, a relationship (and associated trust) already existed.
The Oxford lead researcher (Tierney) identified and involved people affected by young onset dementia; she had no previous interaction with the group prior to this project. She contacted its coordinator, who checked if group members wished to take part.
For the third group, the lead researcher in Keele (Babatunde) approached the College of the Third Age to recruit older people with musculoskeletal and mental health problems. A date was arranged for those who were interested to attend a meeting at the University.
At each meeting, after generating research ideas, group members were invited to prioritise these. In Bristol, topics that might be of interest were discussed in advance with the community group organiser. These topics were then presented to the group and together they decided which ones they wanted to discuss. In Oxford, topics were written on a post-it note as they arose during the meeting. Towards the end of the meeting, participants were given three sticky dots and asked to place them on topics that were of most importance to them. In Keele, a tree of key concerns was created by the group to represent their research priorities (see picture).
During meetings, we asked groups about being PPI contributors in the future, if the priorities we discussed were turned into a review or primary research. They were positive about doing so and felt they could contribute when topics were of importance to them.
Reflections from our PPI contributor
PPI contributor (GR) commented that artwork can capture people’s creative side, take them out of their comfort zone and bring communities together. She added that the project could work well online; for those unable to attend a group in person, virtual meetings may allow researchers to engage with a wider, more diverse set of participants. This is something to think about for the future.
How to see the artwork
We have made a short video about the pieces of art and the research priorities they represent. You can also view the pictures produced by the artists by clicking on this link. We would welcome any feedback. Please send it to Stephanie Tierney (firstname.lastname@example.org), Shoba Dawson (email@example.com) or Opeyemi Babatunde (firstname.lastname@example.org).
Join us for a Twitter chat
We are going to host a Twitter chat about the use of creative approaches to identifying research priorities. It will take place on Monday 24th August (7-8pm). To get involved, follow the discussion by searching for #BOK_PPI. Please add this hastag to your tweet so that everyone taking part in the conversation can view it.
Final reflection from our PPI contributor
Being involved in the project promoted Gillian to explore her creative side during lockdown. She stated: “I purchased materials to keep my mind occupied as I had numerous amounts of deaths due to coronavirus. Working with this project inspired me. I have started making my own flower arrangements for funerals.”
We would like to thank E.Prior who produced the artwork from the Oxford discussion, and M.Viljoen who produced the pieces from the Keele and Bristol discussions. We would also like to thank the three groups who talked to us and took part in this project.
This project was funded by the National Institute for Health Research (NIHR) School for Primary Care Research (project reference 451). The views expressed are those of the authors and not necessarily those of their host institutions, the NIHR or the Department of Health and Social Care.