Reimagining consumer involvement: Resilient system indicators in the COVID-19 pandemic response in New South Wales, Australia.

BACKGROUND: Reflections on the response to the COVID-19 pandemic often evoke the concept of 'resilience' to describe the way health systems adjusted and adapted their functions to withstand the disturbance of a crisis, and in some cases, improve and transform in its wake. Drawing from this, this study focuses on the role of consumer representatives in healthcare services in initiating changes to the way they participated in the pandemic response in the state of New South Wales in Australia. METHODS: In-depth interviews were conducted with two cohorts of consumer representatives. Cohort A included experienced and self-identified consumer leaders, who worked together in a COVID-19 Consumer Leaders Taskforce; Cohort B included participants outside of this group, and purposively included consumer representatives from rural and regional areas, and culturally and linguistically diverse communities. RESULTS: The pause in consumer engagement to support health service decision-making in responding to the pandemic forced consumer representatives to consider alternative approaches to participate. Some initiated networking with each other, forming new collaborations to produce consumer-led research and guidelines on pandemic-related patient care. Others mobilized support from community and politicians to lobby for specific healthcare issues in their local areas. CONCLUSION: The response to the COVID-19 pandemic made visible the brittle nature of previous engagement processes of involving consumers in organizational design and governance. However, the momentum for proactive self-organization in an unexpected crisis created space for consumer representatives to reset and reimagine their role as active partners in health services. Their ability to adapt and adjust ways of working are key assets for a resilient health system. PATIENT OR PUBLIC CONTRIBUTION: This project is a collaborative study between academic researchers and health consumer (patient and public) representatives. It followed the principles of codesign and coresearch, whereby both consumer representatives and academic researchers contributed equally to all stages of the project. The study was cofunded by both academic institutions and consumer representative organizations.

Engaging consumers in health research: a narrative review.

Objective Consumer and community engagement (CCE) in research is increasingly valued in a contemporary healthcare environment that seeks to genuinely partner with consumers and the wider community. Although there is widespread agreement at research governance levels as to the benefits of CCE in research, there is little available research-based guidance as to how best to proceed with CCE organisationally and how to manage and overcome barriers. The aim of this narrative review was to draw together the available research, review findings and relevant governance-related material and to discuss these in light of a case series among research-engaged consumers in order to chart a practical way forward. Methods A narrative literature review about CCE in research was conducted. Following this, a case series among seven consumers who had been engaged as partners in health research was conducted. Finally, the lived experience of these consumers was explored against the findings of the narrative review. Results In all, 121 papers were identified and reviewed, 37 of which were used to inform the content of this paper. The most important benefits of CCE to both consumers and healthcare researchers were related to improvements in trust between consumer and researchers, and the increased relevance and ethics of research agendas ultimately pursued. Barriers to CCE were found to be pragmatic, attitudinal and organisational. Enabling factors that capitalise on the benefits and help address the barriers to meaningful CCE are outlined and discussed in light of a case series conducted among research-engaged consumers in Australia and internationally. Conclusion Best practice standards, organisational commitments and resources are needed to improve the status quo in Australia and to provide health research end-users with research outcomes that better align with their priorities and needs. What is known about the topic? Consumer and community engagement (CCE) in research is increasing in prevalence and is likely to be beneficial to both consumers and healthcare providers and researchers. What does this paper add? Following review of the available research findings and governance statements about CCE, enabling strategies are presented in light of a case series among Sydney-based research-engaged consumers. What are the implications for practitioners? Barriers to consumer and community engagement can be overcome if well understood and tackled organisationally. The potential benefits of shifting to a fully consumer- or community-engaged healthcare research environment are multifactorial and represent a paradigm shift in favour of evidence-based patient and family-centred care.