Broadening diversity through creative involvement to identify research priorities

Abstract

Background Patient and public involvement (PPI) can help with steering and shaping research prioritisation and execution. However, some groups of people may not be encouraged to take part and their voices may be seldom listened to in the production of research. This is important to consider because they may have poorer healthcare experiences. We tried using art as a vehicle for including individuals not necessarily invited to be part of research priority setting. Methods We contacted existing groups and organisations to reach people not routinely supported to be part of PPI. We targeted individuals: a) with dementia, b) with a mental and physical health condition, c) of South Asian heritage. We ran a workshop with each group at which individuals shared their experiences of healthcare. A young amateur artist also attended, who produced a piece of artwork afterwards that reflected the research priorities raised. We held a Twitter chat to discuss these pieces of art and the processes involved in their generation. Results From each workshop, we produced a list of research priorities. These included: a) improving coordination of care for people with dementia, b) information needs and anxiety/guilt around accessing care for people with physical and mental health conditions, c) supporting discussion of women’s health issues in South Asian communities. These priorities were reflected in three pieces of art, which can be viewed online. Feedback from those at workshops suggested that the artwork helped them to feel that their voice had been heard and triggered their interest in how research is developed. Those involved in the Twitter chat commented that art was one means through which researchers could connect with a range of groups in a PPI context when preparing and producing a study. Conclusions We found the medium of art to be an effective way of including a range of people in research prioritisation setting. This approach could be useful for future PPI, building on what we have learnt from the project described in this paper.

Trial Forge Guidance 3: randomised trials and how to recruit and retain individuals from ethnic minority groups—practical guidance to support better practice

“…Work with community groups is a form of patient and public involvement (PPI) and as with PPI elsewhere in healthcare, it is important that community group members be reimbursed for their contributions. For example, Tierney and colleagues [ 43 ] worked with two community group organisers who acted as interpreters during a workshop to help identify research priorities for South Asian women. The two group organisers were paid for their time at a rate similar to the 2021 UK NIHR rate for PPI contributors of £25 per hour [ 44 ].…”

Trial Forge Guidance 3: Randomised trials and how to recruit and retain individuals from ethnic minority groups– practical guidance to support better practice

“…The Culturally Adapted Family Intervention (CaFI) study 42 Work with community groups is a form of patient and public involvement (PPI) and as with PPI elsewhere in healthcare, it is important that community group members be reimbursed for their contributions. For example, Tierney and colleagues 43 worked with two community group organisers who acted as interpreters during a workshop to help identify research priorities for South Asian women. The two group organisers were paid for their time at a rate similar to the 2021 UK NIHR rate for PPI contributors of £25 per hour 44 .…”

Optimising co-design with ethnic minority consumers

“…The need for diverse representation within co-design, and to consider the processes, methods and tools that encourage and amplify diverse voices is therefore recognised [ 7 , 14 , 15 ]. Involving diverse participants in healthcare co-design can bring novel solutions to the issue at hand by encapsulating a broader variety of experiences and knowledge [ 16 ].…”

“…Resources and research principles have been developed to address inequities in co-design participation for key populations such as young people, those with disability and in the context of mental health. For example, frameworks and toolkits that enhances involvement and experiences of the disadvantaged and vulnerable population in co-design process have been proposed [ 9 , 15 , 20 – 23 ]. In their study using a modified case study approach to examine challenges against theoretical propositions, Mulvale et al, promotes enacting a set of principles rather than following a set of predefined steps when co-designing with populations such as adults and youths in mental health contexts, indigenous populations, and survivors of domestic violence [ 21 ].…”