The paper by some of the authors of this chapter (Synnot et al. 2023) describes guideline developers’ and patient and public members’ reflections on their experiences of being involved in 5 living guidelines. These living guidelines, discussed in the section on models for PPI in developing living guidelines, were developed in Australia (stroke, COVID-19, inflammatory arthritis and type 1 diabetes) and the UK (COVID-19). They found the fundamental differences between PPI in living guidelines compared with conventional guidelines related to how patient and public members (as well as other guideline contributors) were expected to work on the guideline. The differences for living guidelines were:
- the volume of work fluctuated, and the pace was more unpredictable, sometimes resulting in fewer and shorter meetings, or faster paced work
- meetings were often held online, which could affect relationship building and displace collaborative working with working by emails and digital documents
- the commitment was longer term, which raised different issues about ongoing engagement and management of patient and public members.
These differences have implications for how best to involve patient and public members in living guidelines. The experience at NICE has been that the differences can hamper best practice implementation for PPI, including, practical support (for example, financial reimbursement, making reasonable adjustments), training and co-learning of patient and public members and staff, and feedback and evaluation of effectiveness. While others in the author group have found that training and co-learning is improved through repetition of tasks involved in living guideline meetings.
Although the guideline development tasks may not differ in the case of living guidelines, patient and public members may be asked to contribute to different tasks at multiple timepoints. For example, although recommendations will be developed or updated at regular meetings, guideline scope and priority questions may be revised or emerge over time. Similarly, publication and dissemination can happen at multiple timepoints, or when a recommendation is made, rather than when the whole guideline is published (Cheyne et al. 2023).
Also, the main differences in developing living guidelines mean that the guideline developers might need to consider adapting involvement methods or tasks. For example, NICE found that the highly clinical nature of some living guideline topics meant that patient and public members were sometimes unsure of when and how to contribute within meetings. One possible solution can be drawn from the Australian COVID-19 guidelines. Guideline developer staff, known to the consumer panel, presented the evidence, and interpreted and explained the evidence together with a clinician, who clarified any clinical issues and questions. Such an approach meant all queries could be addressed during the meeting, allowing patient and public members to focus on providing their comments and feedback on the evidence and recommendations.
The authors of the Synnot et al. (2023) paper found that these differences could present as barriers to overcome as well as opportunities to enhance the experience of PPI for everyone involved. Specific implications, barriers, and possible strategies to overcome them in living guidelines are discussed in detail in this chapter, including: