Co-designing a personalised care plan for patients with rectal cancer: reflections and practical learnings

Gard, G; Oakley, J; Serena, K; Gough, K; Harold, M; Gray, K; Anderson, H; Byrne, J; Cockwill, J; Down, G; Kiossoglou, G; Gibbs, P

Author(s): Gard, G; Oakley, J; Serena, K; Gough, K; Harold, M; Gray, K; Anderson, H; Byrne, J; Cockwill, J; Down, G; Kiossoglou, G; Gibbs, P;
Details: Publication Year 2024-02-08,Volume 10,Issue #1,Page 20
Journal Title: Research Involvement and Engagement
Abstract: BACKGROUND: Consumer involvement is considered an essential component of contemporary cancer research, with a movement towards participatory methods, to the benefit of consumers and researchers. Overall, in-depth research on participant experiences and perceptions of their co-designer role-and how these may (or may not) change during a co-design project-is limited. The purpose of this paper was to synthesise the reflective accounts of consumers, project staff, and a researcher who partnered on a project to develop a personalised care plan template, with the aim of generating guidance for others looking to partner with consumers in health and medical research. Here, our team of researchers, project staff, and consumers reflect on the experience of working together using Gibbs' Reflective Cycle, which was completed by team members with responses then undergoing inductive data analysis. RESULTS: Reflections are categorised under three core themes: (1) setting up the group and building relationships (2) measuring the value of consumer involvement, and (3) potential challenges for consumer involvement. Through reflection on our experiences of co-design, our team developed and identified practical strategies that contributed to the success of our partnership. These include setting expectations as a group; having experienced consumers on the team; having regular, pre-scheduled meetings that run to time; and working to overcome challenges identified by the group such as power imbalances, time commitment, and lack of diversity. CONCLUSION: These practical reflections on creating a safe and supportive environment in which genuine consumer involvement can take place could inform other institutions and researchers looking to work meaningfully with consumers in research.; Consumer involvement in cancer research can inform the initial setting of research priorities, and then the design and conduct of research, with a view to optimising research impact. As part of a project to develop a personalised care plan for patients with newly diagnosed rectal cancer, our team of medical oncologists and project staff partnered with a group of consumers from project initiation. Here, we reflect on our experiences, including the benefits and challenges associated with consumer involvement. Positive aspects of the partnership between consumers, project staff, and the researcher included the establishment of a cohesive team, which substantially improved the study design, conduct, and study outcomes. This experience increased the enthusiasm of the project staff and researcher for consumer engagement in future research. Things that negatively impacted the team included the loss of consumers due to cancer-related health issues. A lack of diversity in the consumer group was recognised as a limitation of the breadth of the consumer voice throughout the project. Upon reflection, there were many important learnings regarding meeting preparation, structure, and team culture that we discuss here, looking to provide practical guidance on optimising consumer involvement.; eng
Keywords: Cancer research; Consumer involvement; Research design and conduct
Research Division(s): Personalised Oncology
PubMed ID: 38331826
Publisher's Version: https://doi.org/10.1186/s40900-024-00553-7
Open Access at Publisher's Site: https://doi.org/10.1186/s40900-024-00553-7
Terms of Use/Rights Notice: Refer to copyright notice on published article.

Creation Date: 2024-02-29 09:01:55

Last Modified: 2024-02-29 09:11:44