Table 2 Contexts, possible mechanisms and outcomes of PPIE in implementation of evidence-based guidance for MSK conditions
First Author /Year of publication | PPIE activities | Context for PPIE involvement | Levels of PPIE | Outcomes of PPIE involvement | Probable mechanisms for effectiveness of PPIE in contextualisation and implementation | Additional notes/ Other relevant findings |
|---|---|---|---|---|---|---|
Blackburn 2017 [19] | Design/planning: 1. steering guideline implementation project 2. evaluation of guideline implementation | Implementation in clinical practice Guideline monitoring/quality improvement, and implementation for shared decision making, patient education and empowerment | Shared partnership and leadership | Patient Health outcomes: NR Empowerment/enablement/self-efficacy: NR Guideline uptake/adherence: NR healthcare organisation/practical issues: international collaboration of PPIE within implementation projects | Contextualisation 1. Patient Champion as part of guideline implementation project steering committee 2. PPIE support alongside involvement e.g., in development of a set of glossary of terms to support the involvement of patient panel members throughout the project Implementation Emphasis not only on language translation but also cultural adaptation of patient information resources | Abstract only- lacking actual details and description of PPI in every stage An example of PPI in planning guideline implementation strategy Reports consideration for factors that may affect context such as settings, views of target users and some shared learnings with relevant health care organisation |
Campbell 2018 [20] | Delivery phase: cultural adaptations and contextualisation of a lay version of OA guidance and recommendations | Implementation for shared decision making/patient education/empowerment implementation in clinical practice | Shared partnership and leadership | Patient Health outcomes: NR Empowerment/enablement/self-efficacy: feasibility and effectiveness of patient CoPs Guideline uptake/adherence: NR Healthcare organisation/Practical issues: Implementation of OA guidelines—The production and dissemination of a new resource: culturally adapted, consistent and accurate patient information booklet to aid clinical practice and consequently patient outcomes | Contextualisation Patient voice in language, images, content Implementation 1. PPIE leadership and ownership through CoPs and wider engagement with local patient organisations. 2. Wider engagement with other stakeholders could have enhanced uptake and implementation in practice. 3. Cultural adaptations and considerations for how local health systems works. Nb: output was targeted and localised to the different health systems in the countries involved | Elements of successful PPIE: consistency check with national guidelines; shared learning across countries; freedom of each CoP to adopt a process appropriate to their specific context Offers opportunity for PPI to challenge and evaluate Includes drive to scale up and share learnings around guideline implementation |
De Keyser 2015 [21] | Delivery phase: development of patient version | Implementation for shared decision making/patient education/empowerment | Involvement (process) | Patient Health outcomes: NR Empowerment/enablement/self-efficacy: NR Guideline uptake/adherence: NR healthcare organisation/Practical issues: NR | Contextualisation 1. Training of PPIE participants and partners to ascertain understanding and familiarity with original EULAR recommendations 2. Collaboration with healthcare professionals to guarantee quality and ensure translations are a correct reflection of the original documents Implementation Available resources such as: Link with EULAR, expert academics and researchers? | Abstract only- lacking actual details and description of PPI in every stage Possible link to development of guideline implementation strategy |
De Wit 2011 [22] | Delivery phase: development of patient version | Implementation for shared decision making/patient education/empowerment | Involvement (process) | Patient Health outcomes: NR Empowerment/enablement/self-efficacy: NR Guideline uptake/adherence: An easy tool to facilitate uptake of T2T recommendations in practice (among HCPs) healthcare organisation/Practical issues: enhance shared understanding and ensure smooth processes organisation of RA treatment and monitoring according to recommendations. Outcome of current process: “Participants noticed that the T2T recommendations, like the EULAR/ASAS recommendations, have a strong focus on body functions and structures, while patient-centred care in rheumatology also requires, besides medical expertise and monitoring, non-pharmacological and psychosocial support” | Contextualisation PPIE involvement had been preceded by pre-work among a core group:—four members of the international T2T Steering Group, including one patient representative), produced a draft version of the T2T recommendations in lay language which was discussed, amended and reworded during a 1-day consensus meeting with nine RA patients and moderated by two members of the core group (a patient and researcher). Also, 5 of 9 participants had been previously involved in the consensus meeting leading to the development of T2T recommendations.—Continuity or overfamiliarity with content affect output? Implementation glossary of terms in lay language was also developed to accompany patient version recommendations | Product developed by experienced patient representatives fluent in English. No report of validation among lay patients. Translation into different languages, testing, and processes for dissemination in different countries were agreed as subsequent next steps study described details of PPI participants recruitment and selection as well as detailed level/process of involvement. Missing detail on development stage highlighted during contextualisation Examples of scale up and shared learnings but may have missed opportunity for PPI contributions to define and confirm what implementation should be |
Design, delivery, and evaluation | Implementation in clinical practice Also implementation for shared decision making/patient education/empowerment; Reference to another quality indicator (clinician/research led) in Norway as a basis for comparison and content validity | Shared partnership and leadership | Patient Health outcomes: There were no statistically significant differences in SF-12 PCS: mean difference at the 6-month primary endpoint was − 0.37 (95% CI − 2.32, 1.57) Empowerment/enablement/self-efficacy: improvement in patient enablement suggests a beneficial effect of the intervention on the capacity of patients for self-management—one of the targets of NICE core guidance Guideline uptake/adherence: Uptake of core NICE recommendations by 6 months was statistically significantly higher in the intervention arm compared with control: e.g., increased written exercise information, 20.5% (7.9, 28.3) healthcare organisation/Practical issues: Identifying important and relevant quality indicators of OA in primary care consultations from a patient’s perspective. The OA QI (UK) was developed to assess the uptake of treatment recommended by NICE and complements the new NICE Quality Standards of Care for OA. The development of two OA indicator questionnaires (quality indicators validated for Norwegian OA and UK consultations) coincidental but led to further research to compare patient reported OA QIs across European countries | Contextualisation research team met with RUG members to co-produce the OA QI (UK) questionnaire. Discussion meetings were facilitated by the Centre’s PPI Support Worker/Coordinator, the MOSAICS study Chief Investigator and a trial coordinator. The PPI Support Worker/Coordinator provided a key role by attend the meetings with RUG members to provide assistance and support, prior, during and after meetings. Discussion notes from the meetings were recorded on flip charts and in meeting minutes. Following each meeting, a summary of the outcomes and decisions written in plain English was sent to the RUG members to acknowledge their contribution and verify that all views had been captured. RUG members were also given the opportunity for further comment at the start of the next meeting Implementation The discussion groups took place over a three-year period from 2009–2012. extended gaps between meetings regarding the OA QI (UK) development, the timings of the meetings were governed by the study timeline. However, RUG members were provided with feedback of the meeting and given the opportunity to comment. This process built upon existing working relationships and trust between the RUG and researchers | NB: RUG membership was not greatly diverse, in terms of age, ethnicity, and physical abilities. While obtaining a range of perspectives is the objective of PPI in research and not necessarily ‘representativeness’, it is possible however that the OA QI (UK) does not cover the full range of quality indicators relevant to the population of patients with OA. Nevertheless, the sequential and iterative development of the OA QI (UK) allowed the researchers and RUG members to review and critique earlier suggestions made by the RUG Targeted approach to guideline implementation. Strategy developed close to guideline development though not by the development group. PPI contribution along the continuum included contextualisation, evaluation, refining, scale up and shared learnings | |
Kiltz 2010 [26] | Delivery phase: Translation and brief validity of translations | Guideline impact evaluation | Shared partnership and leadership | Patient Health outcomes: NR Empowerment/enablement/self-efficacy: NR Guideline uptake/adherence: NR healthcare organisation/Practical issues: NR | Contextualisation Patients discussed language, content and evaluated proposed recommendations Implementation NR | Limited detail but article presents a case of PPI in scale up of guideline implementation products The report may also have missed opportunity to capture PPI contributions in defining the specific implementation strategy |
McCaul 2020 [27] | Delivery phase: cultural adaptations, contextualisation of guideline recommendations | Guideline adaptation and contextualisation in a resource-constrained setting | Consultation | Patient Health outcomes: NR Empowerment/enablement/self-efficacy: Guideline uptake/adherence: NR healthcare organisation/Practical issues: access to funding and dedicated human resources were a significant challenge to adapting contextualised recommendations in intended setting | Contextualisation Stakeholders evaluated proposed recommendations Implementation An end-user document with an implementation plan is currently being developed | Key learnings revolved around navigating funding and human resource challenges, whereas opportunities include addressing guideline training gaps and investing in strengthening adaptation and contextualisation of guideline recommendations through stakeholder engagement for efficient guideline development and enhanced uptake PPI contributions indistinct though involvement was aimed at addressing a mix of service delivery (care pathway) and clinical content too Impact of PPI on guideline contextualisation could not be assessed. Missed opportunity for PPI contributions to define and confirm what implementation should be |
Özgöçmen 2009 [29] | Delivery phase: Translation and patient evaluation | Guideline impact evaluation | Involvement (process) | Patient Health outcomes: NR Empowerment/enablement/self-efficacy: NR Guideline uptake/adherence: NR healthcare organisation/Practical issues: possible changes in the applications of drug recommendations were referenced from a linked study due to differences in the legislation and reimbursement institutions between European countries | Contextualisation Patients discussed language, content and evaluated proposed recommendations Implementation NR | PPI centred at latter end for scaling up guideline dissemination product |
O'Sullivan 2017 [28] | Design and delivery-phases | Guidelines development | Consultation | Patient Health outcomes: NR Empowerment/enablement/self-efficacy: NR Guideline uptake/adherence: NR healthcare organisation/Practical issues: NR | Contextualisation Patients involved in development of guidance but unclear how and to what extent Implementation NR | The project team used a professional graphic designer to help with the graphic and formatting elements of the project but found this stage demanding and time-consuming? Challenges with processes and supporting PPI were highlighted Patient voice indistinct. PPI contributions were targeted at later end for scaling up guideline dissemination product Impact of PPI on guideline contextualisation could not be assessed |
Swaithes 2020 [30] | Design/planning: input into design and interpretation of findings | Implementation in clinical practice | Involvement (process) | Aided formative evaluation and capturing mechanisms involved in implementation of guideline recommendations | Contextualisation NA Implementation Expertise and lived experience maximised to inform formative evaluation and capture nuances and context-based factors influencing OA guideline implementation | Focussed PPI input into capturing implementation processes and future learning. Public contributors were part of an established and experienced group for lay involvement in knowledge mobilisation Refining and evaluating PPI in guideline implementation |