Patient and Public Involvement Reporting Consistency: Analysis of 24 Clinical Practice Guidelines From 4 Countries

We compared the reporting of patient and public involvement (PPI) in the development of clinical practice guidelines (CPG) with the guidance regarding PPI in the auspicing organisation's guideline development manual.

We examined the PPI guidance provided by seven guideline auspicing organisations from four countries, that provided guideline development manuals referencing PPI inclusion in guideline development. We determined whether the auspicing organisations provided guidance on four aspects of PPI critical to understanding the process; (i) which patients and public (PPs) to involve, (ii) how to recruit PPs, (iii) where in the process to involve PPs, and (iv) how PPs should contribute to guideline development. We assessed a random selection of 24 CPGs affiliated with these organisations for consistency of reporting of PPI with the guidance provided.

Half (50%) of the auspicing organisations' guideline development manuals provided guidance on all four aspects of PPI. Five of the 24 CPGs (21%) affiliated with auspicing organisations that made reference to PPI in guideline development did not report PPI in their development. Although 79% (19/24) of guidelines did report PPI in their development, only half (10/19) reported PPI that was consistent with the auspicing organisations guidance.

Auspicing organisations often do not provide guidance to guideline developers on critical aspects of PPI. Even when auspicing organisations do provide guidance, CPG developers may not report PPI, and/or not report PPI consistent with that guidance. It is unknown whether this is because PPI was not conducted, or because it was conducted, but not reported, or was reported incompletely.

Auspicing organisations need to improve guidance on PPI in guideline development, and CPG developers need to report PPI more diligently when it is done. Understanding guideline developers' motivations for PPI implementation and/or reporting is critical to facilitate improvement in this area.