Broadening the diversity of consumers engaged in guidelines: a scoping review.

BACKGROUND: Guideline developers are encouraged to engage patients, carers and their representatives ('consumers') from diverse backgrounds in guideline development to produce more widely applicable guidelines. However, consumers from diverse backgrounds are infrequently included in guidelines and there is scant research to support guideline developers to do this. OBJECTIVES: To identify principles and approaches to broaden the diversity of consumers engaged in guideline development. DESIGN: Scoping review and semi-structured interviews. METHODS: We conducted comprehensive searches to March 2020 for studies, reports and guidance documents. Inclusion criteria included the terms 'consumer' (patients, carers and their representatives), 'diversity' (defined using the PROGRESS-PLUS mnemonic) and 'consumer engagement' (the active involvement of consumers at any stage of guideline development). We also conducted four interviews with consumers and guideline developers. We used descriptive synthesis to identify themes, and summarised information about implemented approaches used to broaden diversity of consumers in guidelines. RESULTS: From 10 included documents, we identified eight themes. Themes covered general engagement concepts (Respectful partnerships; Recruitment; Expectations, process and review); specific concepts about guideline development group (GDG) engagement (Characteristics of guideline personnel; Consumers' role, characteristics and prominence; Preparing and supporting consumers); and other (non-GDG) approaches (Online methods; Consultations and research-based approaches). The most commonly included PROGRESS-PLUS categories were Disability, Race/culture/ethnicity/language, Place of residence and Other vulnerable (eg, 'disadvantaged groups'). Each theme included the views of both consumers and guideline developers. We found descriptions of 12 implemented engagement approaches to broaden diversity of consumers in guidelines. CONCLUSIONS: Relationship-building, mitigating power imbalances and meeting consumers where they are at underpin our findings. Engaging with diverse groups may require greater attention to building formal, respectful partnerships and employing inclusive engagement methods.

Feasibility of national living guideline methods: The Australian Stroke Guidelines.

OBJECTIVE: Maintaining clinical guideline currency has been one challenge to traditional guideline development. This paper describes the methods used to maintain a large national guideline for stroke management. STUDY DESIGN AND SETTING: The Australian Stroke Clinical Guidelines are developed to meet Australian National Health and Medical Research Council (NHMRC) standards. Monthly surveillance is conducted for new systematic reviews and randomised controlled studies. Included studies undergo data extraction followed by preparation of updated evidence-to-decision frameworks which are used to inform updates, or development of new recommendations. Small writing groups made up of clinical experts and those with lived experience review and agree on changes, which are finally reviewed by a multidisciplinary Guidelines Steering Group. Draft changes are developed and published using the online MAGICapp platform, with dissemination and promotion via traditional methods as well as social media. RESULTS: Each month approximately 350 abstracts are considered, covering 96 clinical topics and taking on average 16 h to review. There have been four major guideline updates covering 34 new and updated recommendations. CONCLUSION: It is feasible to use 'living' methods to maintain the Australian Clinical Guidelines for Stroke Management. Further work is now needed to understand the impact of living guidelines.