Document Detail

Consumer involvement in topic and outcome selection in the development of clinical practice guidelines.
MedLine Citation:
PMID:  23134217     Owner:  NLM     Status:  Publisher    
Background  Consumer involvement in guideline development is advocated, but minimal participation, such as a nominated consumer representative on a guideline working group, can inhibit their decision-making power and contribution. Little is known about how to involve consumers more effectively in guideline development. Objective  To describe a targeted approach for involving consumers actively in guideline development, by focusing on topic and outcome selection, and to discuss the impact on content and structure of the final guideline. Design  Descriptive study. Setting and participants  Patients and carers (n = 24) from a tertiary hospital in Sydney attended three structured peer-facilitated workshops to complete group-based exercises on topic and outcome selection for guidelines for early stage chronic kidney disease. These workshops were run in parallel with the guideline-writing group. For each exercise, participants formed small groups and facilitated their own discussion, recorded their responses and presented them to the wider group. The topics and outcomes identified were fed back to the guideline writers. Results  The participants actively engaged in the workshop discussions and articulated topics and outcomes they perceived should be included in clinical guidelines. Four main changes to guideline-related outputs were observed. A new guideline subtopic was introduced, guidelines were consumer-endorsed, guideline recommendations and suggestions for clinical care were augmented with consumer-focused issues, and plain English guidelines were developed. Conclusions  Consumer workshops in parallel and feeding into guideline development can be a feasible and effective approach for active consumer contribution. This process can inform the development of both consumer-focused guidelines for clinicians and specific versions for consumers.
Allison Tong; Pamela Lopez-Vargas; Martin Howell; Richard Phoon; David Johnson; Denise Campbell; Rowan G Walker; Jonathan C Craig
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Publication Detail:
Type:  JOURNAL ARTICLE     Date:  2011-3-29
Journal Detail:
Title:  Health expectations : an international journal of public participation in health care and health policy     Volume:  15     ISSN:  1369-7625     ISO Abbreviation:  Health Expect     Publication Date:  2012 Dec 
Date Detail:
Created Date:  2012-11-8     Completed Date:  -     Revised Date:  -    
Medline Journal Info:
Nlm Unique ID:  9815926     Medline TA:  Health Expect     Country:  -    
Other Details:
Languages:  ENG     Pagination:  410-423     Citation Subset:  -    
Copyright Information:
© 2011 Blackwell Publishing Ltd.
Research Fellow, Centre for Kidney Research, The Children's Hospital at Westmead, Westmead Lecturer PhD Candidate, School of Public Health, University of Sydney, Sydney, NSW Research Officer, Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW Nephrologist, Department of Renal Medicine, Centre for Transplant and Renal Research, Westmead Hospital, Westmead, NSW Professor, Department of Nephrology, University of Queensland at Princess Alexandra Hospital, Brisbane, Qld Project Manager, Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW Director, Department of Nephrology, Royal Melbourne Hospital, Parkville, Vic Department Head, Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW Professor, School of Public Health, University of Sydney, Sydney, NSW, Australia.
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