While it is important for the evidence supporting practice guidelines to be current, that is often not the case. The advent of living systematic reviews has made the concept of "living guidelines" realistic, with the promise to provide timely, up-to-date and high-quality guidance to target users. We define living guidelines as an optimization of the guideline development process to allow updating individual recommendations as soon as new relevant evidence becomes available. A major implication of that definition is that the unit of update is the individual recommendation and not the whole guideline. We then discuss when living guidelines are appropriate, the workflows required to support them, the collaboration between living systematic reviews and living guideline teams, the thresholds for changing recommendations, and potential approaches to publication and dissemination. The success and sustainability of the concept of living guideline will depend on those of its major pillar, the living systematic review. We conclude that guideline developers should both experiment with and research the process of living guidelines.

Cochrane Database of Systematic Reviews E ects of consumers and health providers working in partnership on health services planning, delivery and evaluation (Review)

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Patient safety policies increasingly encourage carer (i.e., family or friends) involvement in reducing health care–associated harm in hospital. Despite this, carer involvement in patient safety in practice is not well understood—especially from the carers’ perspective. The purpose of this article is to understand how carers of adult patients perceived and experienced their patient safety contributions in hospital. Constructivist grounded theory informed the data collection and analysis of in-depth interviews with 32 carers who had patient safety concerns in Australian hospitals. Results demonstrated carers engaged in the process of “patient-safety caring.” Patient-safety caring included three levels of intensity: low (“contributing without concern”), moderate (“being proactive about safety”), and high (“wrestling for control”). Carers who engaged at high intensity provided the patient with greater protection, but typically experienced negative consequences for themselves. Carers’ experiences of negative consequences from safety involvement need to be mitigated by practice approaches that value their contributions.

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Knowledge translation resources that summarise and disseminate systematic review findings can support evidence into policy and practice. Since 2007, we have produced Evidence Bulletins; brief, web-based summaries of Cochrane Reviews published by Cochrane Consumers and Communication. Evidence Bulletins are designed for health decision makers employed by or in representational roles within policy and practice settings, that is, policy makers, health professionals and consumer and carer representatives. In this paper, we describe the evolution of our Evidence Bulletins, including revisions made to ensure they reflect the latest research-based guidance on evidence summaries, the results of a subsequent evaluation, and how we incorporated the evaluation findings by making further revisions to the Evidence Bulletin development process and format. The main initial revision to the Evidence Bulletins was the addition of a new section, in which we explicitly considered the relevance of the evidence to the healthcare context in Victoria, Australia. To evaluate the Bulletins, we conducted structured feedback sessions at five Australian health services involving 14 staff and eight consumer representatives. Participants were invited to share their perceptions about the usefulness of the Bulletins and how they might use them for decision making. Although the Evidence Bulletin format, and the new Relevance section were broadly endorsed by both stakeholder groups, a number of suggestions for improvement were identified. As preferences varied somewhat between the two groups; specifically identifying the intended audience for each Bulletin and seeking the input of the nominated stakeholder group in the development may improve usefulness.

Background and AimsIn earlier work, we identified that people affected by multiple sclerosis (MS) can have difficulty finding online treatment information that is up to date, trustworthy, understandable, and applicable to personal circumstances, but does not provoke confusion or negative emotional consequences. The objective was to develop online consumer summaries of MS treatment evidence (derived from Cochrane Reviews) that respond to identified treatment information needs of people affected by MS.MethodsA 2‐phase mixed‐methods project, conducted in partnership with consumers and an MS organisation. Phase 1 included review panels with consumers (Australians affected by MS) and health professionals to test paper‐based treatment summaries before development, and pilot testing of the website. Phase 2 involved an online survey after website launch.ResultsEighty‐three participants (85% affected by MS) took part. Phase 1 participants strongly endorsed key review summary components, including layering information, and additional sections to aid personal applicability. Participants additionally suggested questions for health professionals. Participants across both phases were receptive to the idea of being provided with Cochrane Review summaries online but were seeking other types of evidence and information, such as personal experiences and the latest experimental treatments, which could not be provided. While the small survey sample size (n = 58) limits application of the results to a broader population, the website was viewed favourably, as a useful, understandable, and trustworthy information source.ConclusionWe describe a partnership approach to developing online evidence‐based treatment information, underpinned by an in‐depth understanding of consumers' information needs.

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.