Table 1 Conceptual model of patient and public contributions to guidelines

1. Culture of patient-centeredness

1.1 Shaping how discussions are conducted

Patients/carers brought “common sense to bear” and reminded guideline development group to speak in patient-centered terms (Jarrett [16])

Patient participation helped keep guideline development patient-focused (van der Ham [33])

1.2 Setting patient-centered scope

Patient representatives elaborated on content and scope of guideline topics, particularly relating to lifestyle and psychological impact of tests, etc. (Tong [22])

Participants emphasized need for patient involvement in topic selection (Brouwers [25])

1.3 Describing personal impact of disease

Patient/carer presence constant reminder of experience of disease (Jarrett [16])

Patient involvement helped give “lived experiences” a more central role in guideline development (van der Ham [33])

1.4 Impacting how professional team members view PPI

Experience with stakeholder involvement informed future attitudes; consensus that end-user involvement was worthwhile after initial uncertainty (Coon [24])

2. Meaningful and effective partnerships

2. Meaningful and effective partnerships

Patient’s participation in guideline development led her organization to discuss how to provide robust input into guideline development and resulted in developing an implementation plan which included a role for patient organizations (van der Ham [33])

3. Research relevant to patients/stakeholders (including questions, outcomes)

3.1 Identifying issues that may be overlooked by medical professionals

Mentioning patient-relevant symptoms or issues not recognized by professionals

Focus groups identified issue not in the literature (lack of anesthesia use when self-harm wounds are stitched) (Cowl [31])

Patient input on mental illness guideline emphasized unique topics including vocational limitations, workplace needs, and employment support (van der Ham [33])

Infertile couples mentioned 8 issues not described by professionals, most relating to patient-centered aspects of care (e.g., taboos, lack of support after treatment) (Den Breejen [27])

Importance of non-pharmacologic and holistic approaches

Reminding that medication is not always an appropriate treatment, prompting inclusion of non-traditional therapies (e.g., aromatherapy) in guideline (Jarrett [16])

Prompting a holistic approach including psychological and bereavement support (Jarrett [16])

Emphasizing importance of role of relatives

Importance of role of relatives (Jarrett [16])

3.2 Helping select patient-relevant topics and outcomes

Patient representatives help “feed in” patient and carer issues when developing clinical questions (Graham [28])

PPI resulted in additional guideline subtopic (Tong [22])

Patients helped define key questions, particularly relating to side effects (Díaz del Campo [23])

Patient/carer involvement prompted selection of patient-relevant outcomes (e.g., satisfaction) (Jarrett [16])

3.3 Influencing guideline structure/development

Impacting guideline structure/approach

Patient/carer engagement prompted guideline section on users’ perspective of treatment (Jarrett [16])

PPI resulted in additional guideline chapters on patient issues and on social and psychosocial issues (Graham [28])

Participating in systematic review

Patients involved in synthesizing knowledge, forming recommendations, revising drafts (Légaré [29])

Patient representatives helped incorporate evidence from gray literature (van der Ham [33])

Influencing recommendation development

Patients/carers influenced multiple recommendations; chair felt it was important to test recommendations against patients (Jarrett [16])

Patient representatives ensure patient/carer views are incorporated into recommendations (Graham [28])

Patient preferences provided context for recommendations (Díaz del Campo [23])

PPI in recommendation development can identify whether the problem is a priority, inform meaningful effects, weigh risks and benefits, and assess impact of costs, acceptability, and feasibility (Alonso-Coello [32], EtD 2)

Influencing language used in guideline

Patient/carer involvement made guideline language more patient-friendly (Jarrett [16])

Patients helped make sure the guideline used widely understood terminology (Légaré [29])

4. Use of results in health decisions

4. Facilitating guideline dissemination and implementation

4.1 Prompting inclusion of education, support for patients/carers

Patient/carer involvement prompted inclusion of information and advocacy and support for patients and carers (Jarrett [16])

Patient discussions informed implementation interventions to address workplace stigma (van der Ham [33])

4.2 Contributing to patient guideline versions

Patients informed appropriate vocabulary and relevant content for patient guideline versions (Díaz del Campo [23])

Participants described an important role in creating a patient version of the guideline (Brouwers [25])

4.3 Encouraging shared decision-making

Patients encouraged patients and health care professionals to partner to make decisions (Légaré [29])

4.4 Guiding regarding end-user uptake

Patients/carers provided guidance on how local services should be involved (Jarrett [16])

4.5 Actively disseminating

Patient associations participated in guideline development then incorporated guidelines in educational activities and conferences (Díaz del Campo [23])

End users helped plan charity event with discussion of findings (Coon [24])