Table 3 Mapped PPI activities across implementation process—development of conceptual framework for PPI in guidelines implementation
First Author /Year of publication | PPIE activities | Elements of implementation exemplified | Targets of PPI outcomes | Notes |
|---|---|---|---|---|
Blackburn 2017 [19] | 1. Participated as panel members for planning and steering implementation project across 5 European countries 2. PPI (at country levels) co-developed language translation and cultural adaptation of OA guidebook for patients 3. Patient Panel members helped refine an OA Quality Indicator questionnaire (to be used for evaluating OA consultations in line with guideline recommendations). 2 for use in JIGSAW-E plan for evaluation of PPIE involvement and guardiance implementation | Implementation strategy—define & confirm Contextualise, and assess Optimise (through language translations) and embed in practice (patient champions) Amplify- international collaboration | Primary care, service/care pathway | Limited reporting of the details of PPI process |
Campbell 2018 [20] | Patient and Public "CoP"- Community of practice established to: 1) review OA Guidebook and existing written patient information; 2) support language translation; 3) cultural adaptation: review of content, images and layout; 4) consistency check with national guidelines; 5) shared learning across countries | Implementation strategy—define & confirm through CoP approach Contextualise—cultural adaptations, images and layout to suit intended audience Optimise through content check with established guidelines and international collaboration | Primary care/community (including charity & patient advocacy groups) | Process was through discussions in meetings, reviewing and commenting on drafts |
De Keyser 2015 [21] | PPI helped to: extract patient relevant information for self-management from EULAR recommendations; 2. Language translations; 3. disseminate to patient communities | Contextualise and optimise through—development of patient version Amplify through supported dissemination among patient community | Primary care/community | Limited reporting of the details of PPI process |
De Wit 2011 [22] | PPI helped to: develop patient version of previously prioritised set of recommendations | Contextualise and optimise through—Formulating a patient version in lay language | Primary care/community | Consensus process used. Well established methodology. However, possible negative impact on contextualisation is unknown as PPI contributors were not allowed to make any changes in the content or meaning of the recommendations |
PPI helped to 1. identify important and relevant quality indicators (QI) for patients with OA when consulting in primary care, 2. developed wording and response options for a self-report OA QI. 3. assessed (via comparison) content of the OA QI (UK) questionnaire with a parallel questionnaire developed in Norway. 4. co-developed training for HCPs on guideline-based OA consultation and the use of OA QI | Implementation strategy—define & confirm design, Contextualise, challenge, and assess Optimise and embed Amplify, scale up | Primary care | Methods used for PPI included facilitated discussions, co-productions, consensus process, review of drafts | |
Kiltz 2010 [26] | PPI helped to develop language translation and brief validity of patient versions | Optimise (through language translation) and contextualise to local settings: mainly targeted at patients | Primary care/community | Â |
McCaul 2020 [27] | Cultural adaptations and contextualisation of actual guidance and recommendations | Contextualise to local settings: mainly targeted at health care professionals | Primary care, service/care pathway | Limited reporting of the details of PPI contributions and process apart from involvement on a consensus study alongside research experts and HCPs |
Özgöçmen 2009 [29] | PPI activities mainly language translation and evaluation of content for accessibility | Optimise through translation and contextualisation to local settings: mainly targeted at patients | Primary care/community |  |
O'Sullivan 2017 [28] | PPI helped to: 1. establish need for and define strategy for implementation 2. draft patient relevant information/version of guidelines; 2. contextualise for use among target audience 3. planned dissemination to patient communities | Implementation strategy—co-defined needs and plans Contextualise and optimise through—development of patient version Amplify through supported dissemination among patient community | Primary care/community | Highlights PPI skills (including witting experience, editing, graphic design, and project delivery) and contributions (multiple drafts and discussions) to implementation project |
Swaithes 2020 [30] | PPIE liaison in general practices | Implementation strategy—define Contextualise, and assess Optimise and embed in practice through PPIE liaison in primary care | Primary care, service/care pathway | Facilitated discussion, PPI viewpoints, process evaluation |