Table 1.
PCORI conceptual model—relevant outcomes | PPI guideline contribution | Select examples from literature* |
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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]) |
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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]) |
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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]) |
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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]) |
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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]) |
Policy or development publications (rather than research) are presented in italics
PPI patient and public involvement
*Additional examples are provided in Additional file 1