Perceptions and experiences of consumer representatives on patient safety investigation teams: a qualitative analysis

Introduction: There is growing recognition of the importance of consumer representatives (CRs), consumers with lived experience, and advisors and volunteers in health systems to foster consumer-oriented care. As part of this changing perception, some health services are inviting CRs to be on patient safety investigation teams. However, little is known from empirical studies about these representatives’ experiences and perceptions of their roles. This paper aims to contribute to understanding CR's involvement on investigation teams by examining the benefits, challenges, and other aspects of their participation. Methods: The study takes a qualitative approach and draws on data from interviews with 11 CRs and 10 focus groups comprising health service staff from Victoria, Australia, and a data interpretation workshop with an advisory panel of six consumers across four Australian states. Thematic analysis was used for data analysis. Results: We found that CRs have positive experiences in patient safety investigation teams, and their involvement often leads to more patient-focused reviews and outcomes, and use of plain language. However, they also experienced some challenges, such as not being fully respected as equal members of the team, feeling uncomfortable speaking up, and practical issues such as payments and access to documents. The chair/facilitator plays a significant role in engaging with CRs meaningfully, and directly shapes the behaviours of the entire investigation team. Both CRs and chairs/facilitators require considerable institutional and systematic training and support within health services. Conclusion: The benefit of CRs on investigation teams outweighs the challenges across the individual, team/organisational and health systems levels. More resources and policies are needed to support CRs' sustainable inclusion, diversity and involvement in our current and future health services. Patient or Public Contribution: Eleven individuals with experience as CRs in patient safety investigation teams were interviewed. As indicated by the co-authors of this paper, six consumers from four states who are members of a research consumer advisory committee have been involved in co-designing the study methodology, interpreting the data, and writing this paper with the research team.