Public and Patient involvement and engagement in research design. Co-create a toolkit that enables quality time together across the Dementia journey.

Abstract

Public and Patient involvement and engagement in research design: Co-create a toolkit that enables quality time together for Dementia. There is a growing consensus in the U.K. that public and patient involvement and engagement (PPIE) - e.g. people living with dementia (PLWD), their families, carers, professionals and community - in dementia research is instrumental in improving the quality of research projects and strengthening its relevance and impact. However, publications on PPIE during dementia design research is lacking knowledge and learning exchange within research communities. This project fills in this knowledge gap by involving and engaging 12 family caregivers, care workers and professionals who care for PLWD aged 65 and above at any stage (mild, moderate, and severe) as well as relevant stakeholders. The participants contributed in the research design to co-create an easy access, supportive toolkit that could be used by both PLWD as well as their in/formal carers to promote person centredness care in dementia. This was achieved through participatory approaches with dementia carer focus group workshops and a stakeholder engagement workshop to: (a) generate the ideas and research questions by spending meaningful/quality time together face-to-face and digitally across the dementia journey, (b) using an experience-based co-design approach to design the research methodology for co-creation workshops, (c) co-produce a research funding proposal which has strong PPIE in all stages. d) feedback on the experience with the design research. We argued a participatory approach to PPIE during design research can be time consuming and costly though critical. Firstly, the primary strength of participatory approach was the target population trying our initial research design, then design the research collaboratively. Secondly, it developed a sense of ownership and ongoing commitment among the PPIE groups. Thirdly, it helped us to ensure culturally and logistically appropriate design research. Fourthly, it helped participants to be more meaningfully engaged in research, which in turn concluded with a co-created research design that could have greater potential to produce relevant, meaningful research findings translated to care practice and policy.