Synnot et al. (2023) found that the experiences of patient and public members and guideline developers involved in living guidelines highlighted that the fundamentals of good practice in PPI (for example, trusted relationships and co-designing the engagement) still apply to a living approach. Guideline developers were asked what worked well and what could have been improved in their living guidelines experience. Many of their reflections were consistent with established good practice in PPI in healthcare more generally, or echoed the experiences of contributors in conventional guidelines, for example, insufficient preparation of patient and public members or unclear expectations (van der Ham et al. 2014).
We suggest that because living guidelines have only recently begun to be developed, as well as the complexity of changing to a living guidelines model, guideline developers should:
- preferably, be experienced in working with patient and public members
- ideally, operate in an organisation with in-house expertise.
Guideline developers should be sufficiently skilled in PPI (either through training or previous experience) and be able to plan and support best practices throughout guideline programme. The GIN Public Toolkit offers considerable guidance about how to engage patient and public members in ways that are meaningful and beneficial for all parties.