Resources to Support Consumer Engagement in Health Research About Chronic Conditions: A Mixed Methods Study

Abstract

In health research, consumers are people with lived experience of health issues, as well as carers and family members. Engaging consumers is increasingly recognised as essential for making research relevant, impactful, and grounded in lived experience, especially in chronic conditions research, where experiences are long-term, complex, and shaped by ongoing interactions with health services. However, engagement remains uneven. Support resources are fragmented and rarely synthesised, and recognition practices vary widely across Australian research settings, with limited consistency in financial remuneration, non-financial recognition, or payment rates. This inconsistency can undervalue consumers' time, expertise, and labour, undermining meaningful engagement. This thesis aimed to (1) identify and synthesise evidence-based resources to support consumer engagement in chronic conditions research; (2) examine how consumers' contributions are currently recognised across Australian research organisations; and (3) develop an evidence-informed framework to strengthen recognition of consumers' contribution to research for their engagement in the Australian context. A mixed-methods study was conducted in three phases. Phase 1 was a systematic scoping review (2013-2023) using Arksey and O'Malley's framework and subsequent enhancements, searching seven databases and synthesising findings through thematic analysis. Phase 2 was a national survey of Research Australia member organisations, co-designed with a multi-stakeholder working group; quantitative data were analysed descriptively and qualitative responses via content analysis, generating preliminary recognition models for stakeholder review. Phase 3 involved deliberative co-design workshops with 21 stakeholders (including nine consumers with chronic conditions) to refine the models and develop a recognition framework informed by guidance, survey results, and workshop evidence. Findings were then integrated using joint displays and interpreted through Axel Honneth's recognition theory to produce an integrated, recognition theory-based framework for consumer engagement in chronic conditions research. Four primary contributions emerged. First, the scoping review produced an overarching framework for consumer engagement in chronic conditions research comprising six interrelated themes: promoting reciprocal learning; fostering supportive environments; providing capacity-building training; acknowledging contributions; using facilitative resources; and evaluating engagement impact. Second, the national survey mapped organisational recognition practices across Australia, demonstrating strong support for recognising consumer contributions alongside substantial variation in remuneration and non-financial recognition approaches, and a clear appetite for national guidance. Third, deliberative workshops refined stakeholder priorities and led to the co-development of Australia's first nationally oriented framework for recognising consumers' contributions to health research, including guidance on decision-making considerations, remuneration structures (project-based, meeting-based and hourly), payment methods, and non-financial recognition options. Fourth, synthesis of findings across phases positioned consumer engagement as an ethical relationship grounded in dignity, equity, and social justice, and specified how relational, structural, and symbolic recognition interact to shape what meaningful engagement requires and how it can be operationalised across research contexts. This thesis provides a coherent evidence base and practical tools to strengthen consumer engagement in chronic conditions research. By integrating empirical findings with recognition theory, it offers a theoretically grounded and implementation-oriented account of how recognition can be enacted across relational, organisational, and symbolic domains to support more equitable, consistent, and meaningful consumer engagement.