Patient and public involvement in preclinical and medical research: Evaluation of an established programme in a Discovery-Based Medical Research Institute.

BACKGROUND AND CONTEXT: Involving people with lived experience of health conditions and the public (consumers) in health research is supported by policy, practice and research funding schemes. However, consumer involvement programmes in discovery-based preclinical research settings are uncommon. Few formal evaluations of these programmes are reported in the literature. OBJECTIVE: This study aimed to evaluate an established patient and public involvement programme operating in a major Australian Discovery-Based Medical Research Institute (DBMRI) to inform programme development and the wider field. DESIGN AND PARTICIPANTS: A multimethods programme evaluation incorporating demographic, descriptive and qualitative data obtained through consumer/researcher co-developed online surveys and semistructured virtual interviews. Programme participants (n = 111) were invited to complete an online survey seeking feedback on their experience of involvement, programme processes and perceived impacts. A purposive sample of 25 participants was interviewed. Descriptive data were analysed using explanatory statistics and qualitative data from surveys and interviews were thematically analysed. RESULTS: This consumer involvement programme was found to be useful and meaningful for most participants, with specific examples of perceived added value. Consumers most commonly engaged with researchers to inform research development, prepare funding applications or strengthen lay communication of science. Genuine consumer-researcher interactions, relationship development and mutual respect were key elements in a positive experience for participants. Opportunities to 'give back', to learn and to ground research in lived experience were identified programme strengths and benefits. Developing researcher training in how to work with consumers, increasing the diversity of the consumer group membership and expanding the range of consumer activities were identified opportunities for improvement. Organisational support and adequate programme resourcing were identified as key enablers. CONCLUSION: Discovery-based preclinical research is often viewed as being distant from clinical application; therefore, consumer involvement may be considered less relevant. However this study identified value in bringing a strong consumer voice to the discovery-based research process through a coordinated, organisation-wide approach with the potential for application in similar preclinical research settings. PATIENT OR PUBLIC CONTRIBUTION: Four consumer partners from the DBMRI Consumer Advisory Panel were actively engaged in developing this programme evaluation. Specifically, these consumer partners co-developed and pilot-tested surveys and interview guides, reviewed and commented on project data analysis and reporting and also contributed as co-authors by editing the manuscript.

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

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.