Yes / The growing literature on Patient and Public Involvement and Engagement (PPIE) and dementia identifies specific problems related to the influence involvement has on research outcomes, over-reliance on family members as proxies, and lack of representation of seldom-heard groups. Adaptations to the PPIE process are therefore needed in order to make possible the involvement of a broader spectrum of people living with dementia. To adapt the PPIE process in order to make participation in co-creation by people living with dementia accessible and meaningful across a spectrum of cognitive abilities. Design: Narrative elicitation, informal conversation, and observation were used to co-create three vignettes based on PPIE group members’ personal experience of dementia services. Each vignette was produced in both narrative and graphic formats. Participants: Nine people living with dementia and five family members. Results: Using enhanced methods and outreach it was possible to adapt the PPIE process so that not only family members and people with milder cognitive difficulties could participate, but also those with more pronounced cognitive problems whose voices are less often heard. Conclusions: Making creative adaptations is vital in PPIE involving people living with dementia if we wish to develop inclusive forms of PPIE practice. This may, however, raise new ethical issues, which are briefly discussed. / National Institute for Health Research. Grant Number: PR-R10-0514-120006

Yes / Participation of community stakeholders in health research priority setting is an emerging trend. Despite this, the involvement of marginalised groups in research prioritisation is limited and where they are involved, sample sizes are small, where individuals are merely consulted with, rather than coproducing the research agenda. Without addressing power dynamics inherent in research prioritisation with marginalised groups, their engagement in the research process can be tokenistic and the resulting research agenda unreflective of their needs. This article, therefore, aims to generate knowledge on how feminist participatory action research was used to co-produce an obesity research agenda with British Pakistani women, a seldom heard population, living in deprived areas. The methodology enabled Pakistani women to be involved in all stages of the project, culminating in the co-production of an obesity research agenda that accurately reflects their unmet needs. Women’s engagement in the project led to their increased confidence, the formation of relationships that lasted beyond the research project, improvements to their lifestyles, and engagement in further research. Feminist participatory action research may be used by researchers as a guiding methodology due to its ability to improve women’s lives and develop research agendas for women’s health. / National Institute for Health Research (NIHR) under its Applied Research Collaboration (ARC) Yorkshire and Humber [NIHR200166], the UK Prevention Research Partnership (UKPRP) - [MR/S037527/1], the NIHR Clinical Research Network, NIHR ARC Yorkshire and Humber / Research Development Fund Publication Prize Award winner, Jul 2023.