Recognising Consumers' Contributions to Health Research: Co-Designing a Remuneration Framework for the Australian...

Consumer engagement ensures research reflects lived health experiences and remains relevant to consumers' needs. However, challenges persist in appropriately recognising their contributions. Remuneration for consumers' time, skills and expertise, alongside reimbursing out-of-pocket expenses, remains a key challenge. While individual remuneration policies exist across Australian states and territories, a cohesive national framework has yet to be developed.

This study aimed to develop a remuneration framework recognising consumers' contributions to health research in Australia.

The framework was developed through: (1) a review of the international literature and Australian state- and territory-based consumer advocacy organisation remuneration guidelines, (2) a stakeholder survey of current practices and (3) integration of findings to develop four preliminary remuneration models, which were presented for deliberation in six workshops with key stakeholders. Workshop data were analysed using framework analysis.

Workshop participants included twelve representatives from research organisations and nine consumers with chronic conditions. The final framework comprises: (1) decision-making considerations, (2) remuneration rates (project-based, meeting-based and hourly rates), (3) payment methods and (4) non-financial recognition approaches. The framework was designed to address the needs of diverse organisations, from small not-for-profit entities to larger research institutions with dedicated funding.

This study developed the first nationwide remuneration framework to guide the Australian research community in recognising consumers' contributions to health research. While not the only model for remuneration decision-making, it serves as a valuable starting point for dialogue and future policy development. Further evaluation incorporating consumer partners' experiences across diverse research contexts is essential to enhance the framework's applicability and foster fair recognition for contributions to research.

A project working group, including representatives from nine Research Australia member organisations, was actively involved throughout the study. These included three large universities from three different Australian states, one state-based local health district representative and five national independent not-for-profit research organisations, including four consumer-led disease-specific organisations. Each organisation was represented by 1-2 people at each meeting. Including four members of the research team and two members of Research Australia, each meeting was comprised of 18-20 people. Their contributions included refining study aims, reviewing and piloting the survey, conceptualising remuneration models, recruiting workshop participants and finalising the remuneration framework. Input was gathered through three online meetings and email exchanges. The first meeting focused on survey design and distribution; the second on survey findings, remuneration models and recruitment strategies; and the final on reviewing workshop findings and co-designing the remuneration framework. Additionally, 21 participants (9 consumers with lived experience of chronic conditions and 12 organisational representatives) contributed to six deliberative workshops.