Table 3.

Reporting of patient engagement for included studies with active patient engagement (n=11)

Reference	Consultation	Involvement	Shared leadership
Ospina et al, 201856	34 COPD patients were involved in survey to inform the development of the COPD discharge bundle.	None.	None.
NICE, 201631	Public and Patient Involvement Programme (PPIP) provides input on provisional guidelines. Mental illness advocacy organisations provided input on the scope. Patient preferences and values considered in developing research questions.	2 patients and 2 caregivers were part of the guideline committee (4/15). 1 PPIP member sits on the scoping group.	None.
Cameron et al, 201635	At least 2 patients or caregivers were external reviewers.	Stroke survivor(s) were part of the writing group which discussed and debated the value of evidence of recommendations.	One stroke survivor was made a coauthor of the journal article.
Ccac, 201536	50 patients were interviewed to develop scope. Members of a patient and family advisory forum (Mississauga Halton Share Care Council) were consulted to develop the scope.	50 patients were involved in postdischarge interviews after implementation of new approach. Design team had a patient and a caregiver to help build a patient-centred approach to transition planning.	Patients were engaged at every stage, including creating the scope of the problem.
NICE, 201532	Public and patient involvement programme (PPIP) provides input on provisional guidelines. Patient preferences and values considered in developing research questions.	4 patients and caregivers were part of the guideline committee (4/14). 1 PPIP member sits on the scoping group.
Coombs et al, 201549	Patients (unclear how many) engaged in focus groups that developed questions to be used in the national stakeholder meeting to inform the development of a clinical guidance document on transferring critically ill patients home to die. At the meeting, these patients were also involved in informing guidance content by participating in the event’s activities.	None.	None.
Network, 201034	Patient involvement officer provided support and facilitation for the guideline development group (GDG). Draft guideline was available on the SIGN website for a month to allow the public to comment. At least 2 peer reviewers were patients or caregivers. Members of the SIGN patient network were also invited to comment on the draft guideline.	4 lay representatives were part of the GDG; at least 2 were patient representatives selected from national and/or local patient-focused organisations in Scotland (4/26). Representatives participated in informal consensus.	Patients were engaged at every stage. Individuals or patient groups may propose a guideline topic through an application.
Snow et al, 200940	Patient groups from the Institute for Family Centred Care attended the Transitions of Care Consensus Conference (unclear how many). Patient groups were involved in breakout sessions focused on discussing the principles and standards already drafted for revision. Revision, refinement and prioritisation of standards were done through a group consensus voting process.	None.	None.
Ball et al, 199738	None.	One patient representative was a part of the multidiscipline task force that developed the transitional care plan (1/33). Unclear on the consensus process.	None.
Davies and Hopkins, 199737	Patients were interviewed to inform guideline for patient management concerning communication and support. Patients were involved with approval of final guidelines.	Patient and relative groups (unclear how many) were a part of the working group, which reviewed and debated provisional guidelines derived from research literature.	None.
Gresham and Stason, 199539	The public was consulted through an open forum where professional and provider organisations, manufacturers, pharmaceutical firms and individuals can present written or oral statements. Patient organisations reviewed the patient and family guide.	Guidelines are developed by a multidisciplinary panel of experts with one patient representative who provided the patient perspective (1/16).	None.