Griffiths, Sarah;
Robertson, Martin;
Kaviraj, Chandrika;
Davies, Firoza;
McDevitt, Marie;
Richards, Al;
Russell, Marcelline;
(2024)
Reflections on co-production: Developing a dementia research funding application with a diverse lived experience group.
Dementia
10.1177/14713012241231916.
(In press).
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Abstract
Introduction and Background to Study: Published work on dementia research co-production focuses on developing health and social care interventions. Less is written about practicalities and experiences of co-producing dementia research funding applications. UK public contributors are typically from white middle class populations. Widening involvement is essential for co-produced research that meaningfully addresses health inequalities. We provide an example of a diverse lived experience group co-producing a dementia research funding application. An NIHR Dementia Career Development award funded PPIE work to develop a broad research idea. A culturally diverse lived experience group consisted of one person living with dementia, four carers and one former carer. Virtual group sessions drew on each person’s unique experiences and expertise. Two co-leads collaborated closely with the researcher. // Methods: We reflected on our experiences of diversity and inclusion within the group, based on a coproduced set of questions to guide reflection. Written records of reflections were captured and refined by the group. // Results: We structured reflections into three overarching categories: Diversity and inclusion, Benefits to group members and Challenges. The group felt empowered, heard, and like equals in the process. Members valued diversity and mutual learning within the group. Involvement of co-leads was seen as democratic and inclusive. Some members felt Equality, Diversity and Inclusion (EDI) discussions were challenging.// Discussion and Conclusions: We share valuable lessons learned in the process, including suggestions for facilitating EDI discussions, building in funding for time and travel to support relationship building, and ensuring PPIE remuneration processes are accessible and streamlined.
| Type: | Article |
|---|---|
| Title: | Reflections on co-production: Developing a dementia research funding application with a diverse lived experience group |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1177/14713012241231916 |
| Publisher version: | https://doi.org/10.1177/14713012241231 |
| Language: | English |
| Additional information: | © The Author(s), 2024. This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/. |
| Keywords: | dementia, co-production, patient and public involvement and engagement, diversity, inclusion |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health > Primary Care and Population Health |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10187056 |
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