Consumer involvement in the development and dissemination of chronic kidney disease guidelines: a summary of a meaningful and sustainable approach

Oral
2024 Prague [Global Evidence Summit]
Cashmore B1, Craig J2, Guha C1, Gutman T1, Howell M1, Jaure A1, Krishnasamy R3, Lopez-Vargas P4, MacGinley R5, Roberts I1, Scholes-Robertson N1, Synnot A6, Tunnicliffe D1, Wong G1
1Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia
2College of Medicine and Public Health, Flinders University, Adelaide, SA, Australia
3Centre for Kidney Disease Research, The University of Queensland, Brisbane, QLD, Australia; Department of Nephrology, Sunshine Coast University Hospital, Birtinya, QLD, Australia
4Child Protection Unit, The Sydney Children's Hospital Network, Sydney, NSW, Australia
5Eastern Health Clinical School, Monash University, Melbourne, VIC, Australia
6School of Public Health and Preventive Medicine, Monash University, Melbourne, VIC, Australia; Centre for Health Communication and Participation, Department of Public Health, La Trobe University, Melbourne, VIC, Australia

Background:

The involvement of consumers in guidelines is widely advocated to improve their relevance and uptake. However, the approaches to consumer involvement in guideline vary and are not well documented.

Objective:

We describe the consumer involvement framework of Caring for Australians and New ZealandeRs with kidney Impairment (CARI) Guidelines, the Australian and New Zealander guideline developers in chronic kidney disease.

Methods:

We used a descriptive document analysis to collate all relevant policies, documents, emails, and presentations on consumer involvement in our organizations. We performed a narrative synthesis of collated data to summarize our evolving consumer involvement approach in guidelines.

Results:

We involve consumers at all levels of CARI guideline development and dissemination, from conducting consumer workshops to inform the scope of guidelines, to including consumers as members of the guideline working groups and overseeing operations and governance as members of the steering committee and staff (Figure 1). Our approach has expanded guideline scope to include topics on patient education, psychosocial care, and clinical care pathways and focusing the literature reviews to assess patient-important outcomes. The trust and relationships developed with consumers throughout our process has led to the generation of consumer version guidelines that improve the dissemination and translation to support shared decision-making.

Conclusions:

Meaningful consumer involvement can be achieved through a comprehensive approach across the entire life cycle of guidelines. However, it must be individualized by ensuring that the involvement of consumers is timely and flexible. Future work is needed to assess the impact of consumer involvement in guideline development.