Partnering with Consumers, Experts in their Health
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Perth, Australia
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Abstract
Patients and their families (i.e. Consumers) are experts in their own health and family and bring invaluable insights gained through their lived experiences to the development of research, education, and health policy. Their involvement should be integral from the outset, informing decisions that directly impact healthcare delivery and professional education. However, most healthcare research, health professional education, and health service delivery are designed without meaningful consumer engagement. This can result in gaps between sustainable healthcare delivery and consumer needs. Engaging consumers can be challenging and time-consuming, as it requires building trust, ensuring clear communication, and fostering supportive relationships. Key recommendations for successful consumer engagement include: 1) Align consumer involvement directly with the research or education area targeted for improvement; 2) Move beyond tokenism by defining a clear purpose and focus that genuinely values consumer contributions; 3) Provide ongoing guidance to help consumers understand their role and navigate the complex language and processes of research; 4) Take into account their potential vulnerability as patients or family members; 5) Offer opportunities for consumer workshops and meetings with other research consumers; 6) Ensure research meetings are genuinely collaborative, with the consumer voice being an integral part of the process; 7) Create space for consumers to share concerns, while also managing engagement to reduce distress and risk; and 8) Provide reimbursement or incentives to acknowledge consumers’ time and ensure their involvement does not incur personal costs. Despite the challenges, such as time and differing expectations, the long-term benefits outweigh the difficulties. Using a co-design framework, with an emphasis on collaboration and relationship building, to co-create research leads to the development of authentic and relevant outcomes. This plenary provided practical strategies of how to build and sustain a consumer partnership for the development of research and education.
Journal Title
Journal of Family Nursing
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Abstracts from the 17th International Family Nursing Conference held in Perth Australia, June 17-20, 2025
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31
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1_suppl
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Coyne, E, Partnering with Consumers, Experts in their Health, Journal of Family Nursing, 2025, 31 (1_suppl)