Exploring the use and usefulness of living guidelines for consumers: international online survey of patients' and carers' views

Background and Objective: Living guidelines contain continually updated, and potentially changing, clinical recommendations. The implications of living guidelines for consumers (eg, patients, carers, and people with lived experience) - particularly how living guidelines should be developed and disseminated – are yet to be established. The objective of this study was to explore consumers’ views about how best to support the use and usefulness of living guidelines to consumers. Methods: This study used a qualitative (online survey) design. We invited consumers who were familiar with guidelines (living or conventional) to participate in the study. The survey was distributed globally. Recruitment was conducted via the Australian and international networks of the Australian Living Evidence Collaboration. We invited consumers who were familiar with guidelines (living or conventional) to participate in the study. The survey was distributed globally. Recruitment was conducted via the Australian and international networks of the Australian Living Evidence Collaboration. The 5–10 minute survey collected demographic data then, after introducing the living guidelines concept, asked questions about what living guidelines mean for consumers, how we might make them easy for consumers to find and use, and potential challenges to their use. We analyzed the data using inductive thematic analysis. Results: Forty-five people (71% women) from 12 countries completed the survey. Participants were enthusiastic about the concept of living guidelines and what they might mean for consumers' ability to make informed health-care decisions and receive best care. They also identified potential challenges related to living guideline dissemination, such as low public awareness of guidelines and confusion about updated recommendations. Participants described practical strategies to support consumers’ awareness and use of, and access to, living guidelines. These included: meaningful involvement of consumers in the development and dissemination of living guidelines; raising awareness by promoting the guidelines widely through trusted health information sources and on social media; and using user-centered formatting and design principles (eg, considering accessibility needs, and publishing lay summaries with plain and culturally-appropriate language). Conclusion: Consumers suggested a comprehensive range of dissemination strategies to support the use and usefulness of living guidelines to consumers, which largely reflect best practice in conventional guideline dissemination. Promoting and explaining the living nature of guideline recommendations might support their use by consumers. There should also be a close link between the living guidelines and any versions or additional content created for both consumers and clinicians.