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

Abstract

BackgroundGuideline 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.ObjectivesTo identify principles and approaches to broaden the diversity of consumers engaged in guideline development.DesignScoping review and semi-structured interviews.MethodsWe 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.ResultsFrom 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.ConclusionsRelationship-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.

Public participation in decisions about measures to manage the COVID-19 pandemic: a systematic review

“…⇒ Findings from some of the included studies indicate that online discussions and crowdsourcing campaigns may be cost-effective and efficient ways to engage relevant stakeholders in decision-making processes, but that decision-makers should also be engaged in these processes in order to ensure real influence. 35 integrating citizen engagement into evidence-informed health policymaking, 36 citizen juries in health policymaking, 37 online citizen participation in deliberation and policymaking, [38][39][40] deliberative mini-publics, 41 42 approaches to broaden the diversity of consumers engaged in guideline development, 43 the effect of municipality size on political efficacy and participation, and evaluation tools for patient and public engagement in research and health system decision-making. 44 The aim of this review is to inform decisions about how best to implement and/or facilitate public participation in deliberations and decisions about infection prevention and control measures.…”

“…Systematic reviews with a broader focus have found limited evidence of the effects of public involvement in healthcare planning and policy. 20 30–34 Other systematic reviews have explored multi-stakeholder activities to control COVID-19, 35 integrating citizen engagement into evidence-informed health policymaking, 36 citizen juries in health policymaking, 37 online citizen participation in deliberation and policymaking, 38–40 deliberative mini-publics, 41 42 approaches to broaden the diversity of consumers engaged in guideline development, 43 the effect of municipality size on political efficacy and participation, and evaluation tools for patient and public engagement in research and health system decision-making. 44 …”

Wie gelingt die Einbindung von Betroffenen- und Angehörigenvertreter:innen in die Entwicklung von evidenz- und konsensbasierten Behandlungsleitlinien? Ergebnisse einer Umfrage im Fachbereich Psychiatrie

“…Sowohl der partizipative als auch der Konsultationsansatz haben Vorteile und Herausforderungen. Sie können kombiniert werden, um ein breitgefächertes Meinungsbild zu erreichen und die Repräsentanz der Betroffenenperspektive und die der Angehörigen zu erhöhen [5,20,25].…”

“…Dies deckt sich mit dem Forschungsstand [9,11,12,15] für LL allgemein. Ideal wäre eine Partizipation über alle Phasen des LLE mit Stimmrecht [19,20]. Die AWMF empfiehlt die Einbeziehung der Betroffenenperspektive in die LLE, formuliert dies aber nicht als Verpflichtung [4].…”

Die Beteiligung von Patient*innen an der Entwicklung von Leitlinien in der Klinischen Medizin. Ein selektiver Ländervergleich in narrativer Übersicht

“…Zur Bewertung der Qualität der Patient*innenbeteiligung entwickelten sie einen Monitoring-und Evaluationsrahmen, der sowohl Prozessals auch Ergebniskriterien umfasste (Berücksichtigung des Inputs der Patient*innen im LL-Text, unterstützende Haltung von Fachleuten, Beachtung der Patient*innenbeteiligung, Beteiligung eines Team-Monitors). Darüber hinaus empfehlen Synnot et al [39] in ihrem scoping Review kreative und situationsangepasste Methoden zur Einbindung diverser Gruppen und zum Aufbau langfristiger Ver-trauensbeziehungen, in denen auch vorbelastete Menschen wissen, dass sie gehört und respektiert werden.…”