Patient and public involvement in implementation of evidence-based guidance for musculoskeletal conditions: a scoping review of current advances and gaps

Abstract

Advances in musculoskeletal (MSK) research have been successfully curated into widely endorsed evidence-based recommendations and guidelines. However, there continues to exist significant variations in care and quality of care, and the global health and socio-economic burdens associated with MSK conditions continues to increase. Limited accessibility, and applicability of guideline recommendations have been suggested as contributory factors to less than adequate guideline implementation. Since patient and public involvement (PPI) is being credited with increasing relevance, dissemination and uptake of MSK research, the success of guidelines implementation strategies may also be maximised through increasing opportunities for PPI input. We therefore conducted a scoping review of literature to explore PPI in implementation of evidence-based guidance for MSK conditions. A comprehensive search was used to identify relevant literature in three databases (Medline, Embase, Cinahl) and two large repositories (WHO, G-IN), supplemented by grey literature search. Eligibility was determined with criteria established a priori and narrative synthesis was used to summarise PPI activities, contexts, and impact on implementation of MSK related evidence-based guidance across ten eligible studies (one from a low-and middle-income country LMIC). A prevalence of low-level PPI (mainly consultative activities) was found in the current literature and may partly account for current experiences of significant variations and quality of care for MSK patients. The success of PPI in MSK research may be lessened by the oversight of PPI in implementation. This has implications for both high- and low-resource healthcare systems, especially in LMICs where evidence is limited. Patient and public partnership for mobilising knowledge, maximising guideline uptake, and bridging the research-practice gap particularly in low resource settings remain important and should extend beyond PPI in research and guideline dissemination activities only. This review is a clarion call to stakeholders, and all involved, to transform PPI in MSK research into real world benefits through implementation approaches underpinned by patient and public partnerships. We anticipate that this will enhance and drive quality improvements in MSK care with patients and for patients across health and care settings.

Introduction

Over the past two decades, musculoskeletal (MSK) conditions including back pain and arthritis have remained the leading cause of disability worldwide [1,2,3]. Coupled with an ageing population and multimorbidity clusters, the burden of musculoskeletal pain is increasing in high- and also in Low- and Middle-income countries (LMICs) [1,2,3,4,5,6]. Despite recent advances in rheumatology and MSK research, management of most patients with MSK conditions is yet to be at par with current best evidence especially in low resource settings [5, 6]. The substantial health [1,2,3,4, 6] and socioeconomic costs [1, 3, 4] attributable to MSK conditions contribute to the growing need to improve care quality and minimise significant variations in care using current best evidence [1, 5].

Evidence-based recommendations provide clinical guidance and advice and have the potential to improve health and social care for people with MSK conditions. Such guidance, usually produced by internationally recognised organisations (e.g., National Institute for Health and Care Excellence (NICE), Osteoarthritis Research Society International (OARSI), the European League Against Rheumatism (EULAR), and American College of Rheumatology (ACR), is often underpinned by collaborative efforts of researchers, healthcare professionals, and patients and public involvement (PPI). However, there is evidence to suggest low uptake, application [7], and poor adherence [8] to these guidelines, and that recommendations do not always influence patient care and practice in real world settings [8].

Numerous strategies [7, 8] including clinician educational meetings, barrier analysis studies, dissemination of printed guidelines and patient brochures have been proposed and are being used to introduce guideline recommendations in clinical practice. In spite of improved methodological process, wide endorsements, and dissemination of guidelines; MSK practice is still being fraught by limited accessibility, and applicability of guideline recommendations. This may be due to failings in the way they have been conceptualised for use, implemented and/or translated into real world practice.

Historically, and in response to several shortcomings, citizen science and models for public participation has led to maximizing public assets, competencies, and knowledge for improving health research and delivery in developed health systems [9]. Specifically, PPI in research have led to several advances in the field of MSK research e.g., the establishment of the Cochrane musculoskeletal consumer group, patient involvement with outcomes research and establishment of patient research partner groups [10]. However, inconsistencies in processes versus impact evaluation, failure to distinguish between PPI in research versus PPI in evidence-based knowledge mobilisation, and PPI in healthcare delivery, may have led to an oversight of the need for PPI in implementation and healthcare delivery.

For patients and careers who bear the health implications and socio-economic burden of living with MSK pain conditions, overcoming everyday challenges associated with MSK pain is an evolving task. Though evidence is always evolving, and guideline recommendations tend to be relatively stable over a period of time, yet, in reality, two days are guaranteed to be the same for MSK patients. Interpreting and applying guideline recommendations by people with lived experience is therefore an important consideration for implementation. Consequently, if the research-to-practice gap in MSK is to be closed, and evidence-based recommendations from guidelines successfully implemented to improve quality of care for MSK patients, a holistic approach to PPI is warranted. Such approach needs to be centred on true partnership throughout the continuum of evidence-based guideline production and implementation into practice, policy and service planning (i.e., patients as citizens and partners) [11, 12].

The aim of this article therefore is to explore and summarise PPI in evidence-based guidance implementation for MSK conditions. Beyond development and publication of evidence-based guidelines, we sought to map and examine PPI activities in guideline implementation, supporting adoption into practice and health care planning for people with MSK conditions.

Specific questions that guided our review were, across MSK conditions:

• 1. How have patients and public been involved with evidence-based guidance implementation activities beyond initial development, and dissemination of guidelines?

• 2. What strategies and contextual factors have enabled PPI in evidence-based guidance contextualisation and implementation?

• 3. What are the outcomes of PPI in guideline contextualisation and implementation on quality of care for MSK services and patients?

• 4. What are the current gaps in this field and what evidence is there in the literature regarding PPI contributions to MSK guideline implementation in LMICs?

Methods

The review was guided by published methods for conducting scoping reviews [13] and the Scale for the Assessment of Narrative Review Articles [14].

Search strategy and information sources

A search strategy using a combination of MeSH and free text terms from three categories i.e., musculoskeletal AND patient involvement AND guidelines/ implementation was developed to identify relevant publications in databases: MEDLINE, Embase and CINAHLPlus from their inception until July 28th, 2021 (see “Appendix 1”). No restrictions were applied for language or date of publication. In addition, searches (with keywords e.g., patient/public involvement, guideline implementation/adoption) of NICE, WHO and Guidelines International Network (G-IN) repositories were conducted to identify other relevant reports that may not have been profiled in bibliographic databases. References of relevant literature were hand-searched, and citation tracking of index reports and articles through google scholar were conducted to supplement database searches.

Study selection

Eligible for consideration for this review were articles of any design reporting on PPI for the purpose of guideline contextualisation and/or implementation for any MSK condition in any health settings globally. We defined PPI in guidelines implementation as any activity involving patients, public contributors, and public partnerships to improve adoption, sustainment, and scale-up of evidence-based recommendations [15]. Such activities should not be limited to dissemination and language translations of guidelines only but may also include adaptation of guidelines to local or organisational contexts, training and use of evidence-based recommendations in clinical consultations, planning or commissioning of care [16]. However, brief commentaries of PPI in studies without specific application to evidence-based guideline implementation activities were excluded.

Study selection was managed using a systematic review software (COVIDENCE https://www.covidence.org/). Eligibility criteria were discussed and agreed prior to screening. Titles and abstracts were subsequently single screened using an inclusive approach—where there were uncertainties regarding eligibility, they were included for full text screening. On the other hand, full texts were double screened for eligibility independently by reviewers (OB & SD). Disagreements regarding eligibility were resolved by discussion. Eligibility criteria for included studies is presented in Box 1 below.

Box 1 Eligibility criteria

Extraction of data

A data collection proforma designed and tested a priori (by reviewers with a sample article) was used to extract data including each study’s location (country) of PPI activity, aims, study design, methods, target settings for implementation of evidence-based recommendations, specific MSK conditions being addressed and records of PPI contributors and recruitment. Included articles were explored for critical information regarding the context for PPI, levels of PPI (based on adaptations of Bate and Robert’s [17] continuum of patient involvement) [17], outcomes/impact of such involvement and possible mechanisms for success of PPI in guidelines contextualisation and implementation. As the focus of this review was to provide an overview on the current state of evidence regarding PPI in guidelines implementation, articles fully satisfying our pre-defined eligibility criteria were only subjected to data extraction and not quality appraised [13]. Data were extracted by one reviewer using the customised data collection proforma and independently checked for consistency and completeness by a second reviewer. Where required, clarifications were sought and disagreements between reviewers (OB, SD) were resolved by discussion.

Evidence synthesis

The narrative synthesis framework [18] and the continuum of patient involvement proposed by Bate and Robert [17] was used to guide synthesis. Firstly, the synthesis process involved tabulation, groupings, and classification of PPI involvement for implementation across included studies. Tabulated data were then interrogated independently by two authors (OB, SD) for patterns within the evidence base, exploring relationships (similarities and differences) and describing PPI implementation activities and outcomes between studies. Data were analysed to broadly address the first three questions, mainly to (i) identify and profile PPI activities in relation to the design, delivery, and evaluation of evidence-based guidance implementation; (ii) highlight strategies and contextual factors, particularly levels of PPI enabling evidence-based guidance implementation; and (iii) outcomes of PPI in guideline contextualisation and implementation on MSK services and patients. Outcomes of PPI were considered as either patient health related (e.g., quality of life, shared decision making, self-efficacy) or service-related (e.g., guideline uptake/adherence, informing policy or care commissioning). Groupings of PPI activities, contexts, and outcomes of PPI were validated in discussions among the review author team (OB, SD, OA, KD) and also with PPI co-authors (JB, LP). The robustness of the synthesis in line with tabulated evidence were reflected upon and discussed. Preliminary synthesis and review findings were further discussed and gaps in current evidence identified across the first three review questions were highlighted in review team meetings. Implications for further research and practice were then co-developed on the basis of highlighted gaps in evidence. One reviewer (OB) conducted an initial conceptual mapping of the data and created a visual representation of PPI in evidence-based guideline implementation process. These were further discussed among the author team, subsequent refinement led to the development of a conceptual framework for PPI in guideline implementation.

Patient and public involvement and author team

Two members of Keele’s Lay Involvement in knowledge mobilisation (LINK) group contributed to and provided patient perspective to this review (JB, LP). The LINK group is made up of patient and public contributors who bring personal and volunteering networks and experiences from national charities, local community groups, patient support groups, and NHS organisations, to help support implementation activity, facilitate transfer of knowledge and innovations derived from research projects into real life practice. As PPI co-authors, JB and LP participated in meetings where PPI activities, processes, and guidelines implementation outcomes from included studies were discussed. JB and LP provided insights into what these findings might mean in real life, drafted PPI perspectives, and commented on draft manuscripts. LP also co-drafted the plain English summary of the review with OB (Additional file 1). Review authors have professional backgrounds in social science, evidence synthesis, applied health research, knowledge mobilisation, implementation science, physiotherapy, and general practice. All authors contributed to critical interpretation of study findings.

Findings

Characteristics of included studies

A total of 1586 titles and abstracts were screened as they potentially reported on PPI in the implementation (design, delivery, or evaluation) of evidence-based guidance for MSK conditions. Of these, 58 full texts were assessed for eligibility. Studies were excluded mostly because they did not report specific patient contribution apart from single statements that mentioned patients as part of stakeholder meeting(s); were reports of initial guideline development process (not implementation), related to non-specific guidelines or non-specific musculoskeletal condition (i.e., general patient involvement) or were related to guideline methodology evaluation. A summary of the review process outlining study selection is presented in Fig. 1.

Fig. 1

Flow chart of the review process

Our final sample of studies included ten articles [19,20,21,22,23,24,25,26,27,28,29,30] published between 2009 and 2020 [27, 30] and involving patients and public, researchers and healthcare professionals in evidence-based guidance implementation processes. Three studies [19, 23,24,25, 30] (all related) specified the profile of public contributors involving: commissioners of care, healthcare managers, and public administrators in their implementation activities. Activities relating to PPI in the implementation evidence-based guidance for MSK conditions originated in Europe, most deriving from the UK and involving other European counties (Netherlands, Norway, Denmark, Portugal, Belgium, Cyprus, Czech Republic, Ireland, and Romania—n = 8, some studies were multi-sites) [19,20,21,22,23,24,25,26, 28, 30], with 1 from Asia (Turkey) [29], and 1 from Africa (South Africa) [27]. All were qualitative in design, but two were mixed methods studies (including consensus methods, interviews and focus groups from a nested cluster randomised controlled trials) [25, 30]. MSK conditions for which studies reported PPI in evidence-based guidance implementation were osteoarthritis (OA) [19, 20, 23,24,25, 30], rheumatoid arthritis [21, 22, 29], ankylosing spondylitis [26], chronic musculoskeletal pain [27] and psoriatic arthritis [28]. All included studies involved PPI contributors who had lived experiences of the MSK conditions (Table 1).

Table 1 Characteristics of included studies

Review objective 1: PPI activities in evidence-based guidance implementation

PPI activities were nested within both design and delivery [19, 28], or delivery only [20,21,22, 26, 27, 29] phases of guidance implementation. Two studies (both related) [23,24,25, 30] embedded PPI activity inclusive of design, delivery, and evaluation phases of guideline implementation. PPI activities involved patient contributors in user panels or advisory meetings for: (i) steering associated evidence-based guidance implementation projects, (ii) planning evaluation of guidelines implementation, (iii) language translation, (iv) development of patient version of recommendations, and (v) cultural adaptations and contextualisation of original version of guidance and recommendations.

As successful implementation of evidence-based guidance into practice often requires dissemination as a key step, unsurprisingly, many of the PPI activities reported were related to guideline dissemination and development of guideline dissemination products. Intended target audience for MSK guidelines dissemination products for which PPI related involvement were reported were mostly patients themselves [21, 22, 26, 28, 29]. For many of the PPI language translation activities, high-level agreement on content, acceptability, and accessibility of MSK guideline dissemination products were often reported between PPI contributors and healthcare professionals (HCPs) who took part [22, 26, 28, 29]. Two projects [20, 23,24,25] adopted a more creative stance, targeting resources for dual use by patients and healthcare providers in primary care and community settings.

Review objective 2: Levels of patient and public involvement

More than half of the articles (n = 6: Involvement process n = 2, Consultation, n = 4) included consultative activities typical of low-level involvement (i.e., where depth of involvement was not spelt out in detail, was difficult to unpick or simply required patients input at late stages of implementation activities (e.g., one day meeting/conferences to suggest wordings or vote agreement to previously developed implementation products. Other four articles (3 of these concerned related projects) demonstrated higher-level involvement with PPI (i.e., Shared partnership and leadership n = 4). These often engage patient and public contributors in co-design (including planning, deliberation, reflective processes) where PPI worked together with researchers/HCPs to create solutions for mobilising knowledge and were actively involved in steering the planning, delivery, and evaluation of implementation activities (Table 2).

Table 2 Contexts, possible mechanisms and outcomes of PPIE in implementation of evidence-based guidance for MSK conditions

PPI efforts were mostly (n = 9 studies) targeted at primary health care settings. No study formally evaluated or reported patient and public experiences of the process of being involved in evidence-based guidance implementation.

Contextual factors for PPI in evidence-based guidance implementation

Context for PPI activities as part of evidence-based guidance implementation across the studies included (i) support of well-established/funded organisations, (ii) patient leadership and involvement in implementation planning /design phase, and (iii) country, culture, and training. Except for the one study from Africa, included studies worked on implementation of recommendations that were developed or supported by well-established organisations (e.g., EULAR- 4 studies, NICE/NIHR -3 studies, and the Group for research and assessment of psoriasis and psoriatic arthritis (GRAPPA -1 study). Links to these organisations aided funding, recruitment and selection of PPI contributors, access to a wide pool of patient research partners often with previous experience of PPI in research (“patient research partners”), as well as extended networks and avenues for further dissemination and implementation activities. Patient involvement activities in such studies also followed similar process of conduct and reporting [21, 22, 26, 29].

An important example of the influence of patient leadership and involvement in implementation planning /design phase can be seen in the study by Campbell 2018 where patient and public contributors involved in the implementation activities subsequently formed a “Community of Practice” and then started to engage with other networks of OA patient organisations across all the European countries involved [20]. This demonstrated continuity of PPI in implementation where newly formed OA research user groups were able to work in partnership with researchers throughout a five-year programme of implementation and research. In this review, this was the only reported example of guideline implementation evaluation planned a priori and nested within implementation delivery with active patient involvement.

Review objective 3: Outcomes of PPI in MSK evidence-based guidance implementation

In terms of patient health related outcomes (i.e., Quality of life, shared decision making), only one study [23,24,25] carried out post implementation evaluation to report patient health related outcome following PPI in evidence-based guidance implementation. A process which had earlier resulted in the development of a set of quality indicators of primary care consultations for OA from a patient’s perspective. The study however reports no statistically significant differences in quality of life of patients (including those who participated in “model consultations” and those who did not) as assessed using SF-12 PCS: mean difference at the 6-month primary endpoint was − 0.37 (95% CI − 2.32, 1.57).

There was no direct evidence, or reports of sustained adoption and use of guidelines in practice across most of the included studies beyond short term PPI involvement in implementation activities. In relation to impact on service delivery, one study [23,24,25] led to PPI supported OA quality indictor (patient’s perspective) complementing the NICE Quality Standards of Care for OA that were well received/used in practice and was later conceptualised for use in another care setting (Norway). There were no further organisational or service-related outcomes reported across studies.

Review objective 4: Review highlights and current gaps in literature

Low-level PPI involvement limited to basic involvement and consultative activities relating guideline dissemination products mainly, highlight a significant knowledge and implementation gap for MSK guidelines and evidence-based recommendations. This was also evident in LMICs (based on a single report from South Africa) with limitations and uncertainties around actual PPI contributions [16]. Many reports lacked information about recruitment and demographics of PPI contributors. PPI activities were not included in the guideline implementation design phase, neither was there evidence of equal partnership and stake in the consultative activities.

Based on currently, available literature, guideline uptake strategies appear to be focussed on dissemination and initial acceptance and may have resulted in limited evidence of sustained use, and adherence. Little is known about optimal implementation strategy by which sustained use can be achieved for improving care and minimising variations in practice.

From this review, the level of PPI in implementation work reflects the level of training, country specific over-representation (specifically the UK) and cultural influences on practice in different care settings. Training, development, and practice of PPI in implementation has not spread much beyond Europe- though it is possible that these activities may be occurring at low levels in some form but are not yet well reported in literature. This is important for future reporting so that guideline implementation activities and PPI involvement within these can be rightly accrued.

Eligible studies contributing to this review have all been published over the last twelve years (2009–2021). Though our search strategy was not restricted by date, findings show that in recent times, there has been an increase in the amount of lay and public versions of similar evidence-based recommendations being produced for use in different settings for different audiences. Conceptual understanding of guideline recommendations from such versions may differ for different audiences.

Our PPI co-authors considered the need to address practicalities of applying lay versions of guideline recommendations in real life with PPI support as a necessary next step in MSK guideline implementation. In addition, the PPI co-authors also expressed concerns that discordance between HCP-patient beliefs, different expectations about what the outcome of MSK consultations should be can jeopardise shared decision-making, guideline uptake and adherence. Therefore, an important focus for future implementation research for MSK conditions should involve a proactive, a priori plan for guidelines dissemination products that could be targeted for use by both lay and professional end-users. The G-IN toolkit is an example of such an initiative but has limited uptake in MSK field. Remarkably, the recently updated G-IN public toolkit (https://g-i-n.net/toolkit/) [31] illustrate case studies of PPI in guideline implementation (including shared learning from a new rheumatoid arthritis guideline implementation) [32], and also includes practical advice for PPI in guideline activities. However, the G-IN toolkit and currently lacks reference and applications to guideline contextualisation and implementation in LMICs.

In addition to a palpable knowledge gap relevant to PPI in evidence-based guideline implementation, lack of skills, cultural influences such as paternalism in healthcare settings may also contribute to the limited evidence for patient and public partnership in evidence-base guidance implementation for MSK conditions in LMICs. Increased funding and deliberate engagement, greater international collaboration, implementation research and trusts are needed to build capacity, collaboratively improve knowledge base, and partnerships for PPI in MSK guidelines implementation.

Irrespective of world region, there was an obvious lack of reported PPI activities in concurrent design, delivery and evaluation phases of guidelines implementation found in this review. Guideline producing organisations in collaboration with stakeholders should prioritise implementation design, delivery and evaluation that is ideally developed in parallel with the evidence-based guidance recommendations and not in isolation.

PPI author perspectives on current evidence and way forward

In response to funding requirements and patient advocacy initiatives, public contributors are increasingly invited to contribute to MSK research (e.g., grant applications, research reporting purposes). As a result, PPI in MSK research is more common for seeking opinion about what is ‘doable’ at the beginning of research cycle but without contributors hearing of when research (to which they contributed) has been incorporated into MSK guidelines. Patients who have contributed to research processes are often not aware of MSK guideline findings. There should be a process for linkage and continuity.

Notably, PPI has established relevance in issues relating to health literacy, translation activities and acceptability of the language or text used in guideline dissemination products but not so much about the actual practicalities of applying these recommendations in real life practice alongside HCPs. PPI in implementation and knowledge mobilisation should not be stopping short at producing materials. Community involvement should continue with implementation using new and existing links that were already created through PPI with research. Continuity from research through to implementation should be guaranteed with funding for implementation planned and ready subject to review, as we know that things evolve. Challenges also remain with limited distribution and awareness of guidance-based products and how best and when to use them. Full involvement of PPI from research to guideline recommendations and implementation is important for improving quality of care for MSK patients.

A conceptual framework for PPI in contextualising and implementing evidence-based guidance in practice

PPI activity and evaluation has long been a subject of discussion for research and is an important issue to address in implementation. There is currently no framework for conceptualising PPI contributions to guideline implementation activities. The team (with experience of PPI, knowledge mobilisation/implementation, and MSK research) used evidence from this review (Table 3) and expertise gained in the practical application of theory to explore key principles and consideration for PPI in evidence-based guidelines implementation in an “ideal world”. In doing so, we conceptualised a continuous loop of “creative thinking/co-production” and “strategic doing” with PPI as new evidence evolves and is contextually translated into practice. We propose the “Alliance” framework (illustrated in Fig. 2) with the aim to underscore the need to:

• 1. define and confirm with PPI, guideline implementation strategy at development stage,

• 2. contextualise, challenge, and assess real world impacts and implications of guideline recommendations with PPI

• 3. optimise as needed and embed the use of recommendations in service designs, through coproduction

• 4. further amplify innovations through peer to peer, community-based and systems wide advocacy.

Table 3 Mapped PPI activities across implementation process—development of conceptual framework for PPI in guidelines implementation

Fig. 2

The Alliance Framework for conceptualising PPI in guideline implementation

The Alliance framework comprises of four-continuous loops that indicate:

• PPI as equal partners in guideline implementation process (not just in the development process). PPI voice and investment at every stage needs to be distinct and amplified.

• Context is important—services and care pathway design need to embrace real world perspectives, diversities of use, health systems, resources, and practicalities. PPI can help to factor context in. Guideline implementation is a journey that is better together with patient and public insights.

• Guideline contextualisation and dissemination for use by the public and HCPs goes beyond language translations, it also involves cultural adaptations. PPI can help to shape and facilitate this through community engagements.

• PPI can promote ownership of and engagement with service/care pathway improvement by individuals and communities.

This new framework complements known initiatives by the NICE patient experiences in guidelines and the PARE (People with Arthritis and Rheumatism) networks in EULAR to illustrate how PPI can influence interactions between research, policy and healthcare practice, and benefit diverse stakeholders. As it stands, the Alliance framework requires further input for development and validation. It is therefore being proposed in this first instance as a conceptual framework to further identify opportunities for PPI in care pathway development and also explore the need to increase diversity in PPI, sharing of new knowledge and intelligence across different health systems, and cross fertilization of ideas among local and international communities of practice.

Discussion

We conducted a review of PPI activities in evidence-based MSK guidance implementation, explored strategies and contextual factors that may have enabled PPI in evidence-based guidance contextualisation and implementation, as well as current gaps in literature. A prevalent consultative activity with low-level PPI was found in current literature on implementation of MSK guideline recommendations. For LMICs, the gap in published evidence was found to be wider than envisaged.

A common strategy for evidence-based guidance implementation was translation into different languages and producing lay versions with the intent that culturally adapted, consistent and accurate patient information might enable patient informed decisions about treatment; and to facilitate patient-professional dialogue/shared decision-making process. However, these assumptions are yet to be backed up by strong evidence due to a lack of robust evaluation of implementation and observed low levels of guideline uptake and adherence. Similar to the wider literature on PPI in research, findings from this review shows the lack of evidence for any comprehensive approach on how to translate guidelines into practice. Our findings highlight the need for research that evaluate different implementation strategies in a local context, and the need for future implementation agenda to include understanding of the true impact, costs and possible drawbacks of PPI on implementation processes and outcomes.

Other important roles for PPI activities in evidence-based guidance implementation are largely missing or not visibly reported in current literature. This includes high level PPI and engagement in commissioning of care, and health policies. Our finding of limited PPI in healthcare implementation for MSK is in line with previous literature [5]. In their scoping review of reviews (though not specific to MSK), Modigh et al. [5] found a larger number of studies reporting PPI in research in comparison to healthcare and implementation. According to Forbat and colleagues four models of involvement [33], current advancement in PPI for MSK care is overtly concentrated on one end of the spectrum involving patients and public as consumer (with choice to purchase service). Our conceptual framework (“Alliance”) improves on this by conceptualising PPI in guideline implementation as an unending journey where PPI, and evolving evidence-based recommendations from guidelines can be innovatively integrated into service care pathways for better health outcomes. As such advances in PPI visibility in healthcare planning and policy may be important implementation next steps for MSK care.

An overwhelming gap for evidence-based guideline implementation and patient and public partnerships exists in LMICs. For instance, key initiatives to develop an international practice and research agenda on PPI in clinical guideline lacked specific involvement nor included focus on LMICs [34]. Given that research funding, dedicated human resources, and infrastructures to support new culturally sensitive clinical practice guidelines remains a significant challenge, guideline contextualisation and adaptation becomes one of the most viable opportunities for health systems strengthening. However, decades of non-systematic approached, variable interpretations, and application originating from guidelines developed in high-income settings, may have led to limited uptake in resource-constrained settings. Adequately supported (with training and capacity building) and implemented, contextualisation and adaptations of existing evidence-based recommendations may provide more cost-effective solutions to improving quality of care for people living with MSK conditions where the need is greatest. We therefore call on global health bodies, health ministry technical teams, professional societies, university departments, and guideline producing bodies such as NICE, OARSI, EULAR, ACR and G-IN to prioritise well-coordinated approaches to health systems strengthening in LMICs.

Though not specific to MSK, our findings corroborate that of a doctoral thesis including a comprehensive review of literature on PPI in clinical practice guidelines [35]. Beyond guideline development and dissemination, PPI and engagement in guideline implementation including improvements in health service delivery and care pathways is yet in its infancy, especially in low resource settings. Our findings emphasise the need to move away from tokenistic approaches towards evidence-based guidance partnership and ownership with patients, carers and the public.

Failed reporting culture could be another challenge or setback in shared learning and informing stakeholders’ communities about PPI in evidence-based guidance implementation activities. Articles reporting PPI implementation activities without specific reference to any MSK guideline or evidence-based recommendations were not included in this review. To this end we call for more targeted efforts to reporting in the literature, specific PPI activities in guideline implementation akin to the GRIPP2 recommendations.

Limitations

In the review process many studies were excluded as they reported PPI in guidelines development process and research rather than implementation. We acknowledge however, that there is sometimes a blurred line between guidelines related research dissemination and actual implementation. Some reports could have therefore been missed. We therefore call the attention of academics, knowledge mobilisation professionals, funders and journal editors for more accurate reporting and labelling of implementation reports in the future.

As this article aims to present an overview of current evidence, restrictions to the design of primary studies as part of eligibility criteria for this review would have made it difficult to include any available evidence. Across included studies, there was a wide heterogeneity in the outcomes of PPI activities in MSK guideline implementation, precluding any form of quantitative synthesis. Consequently, we have taken a more cautious and descriptive approach to reporting of outcomes of PPI in guideline implementation.

Beyond the scope of this review, we acknowledge the need for a more detailed evaluation and review of evidence which may be better served by more robust methodological approach including data linkage, tracing and mapping. However, this could also be hampered by limited reporting of PPI activities. We call the attention of funding bodies to the need to invest more on implementation projects and research shaped by robust PPI, and PPI activities that are well reported.

Future perspectives

For many healthcare conditions, available international evidence-based guidance is generated based on high-quality research with PPI, however, guideline impact varies widely and is highly contingent on successful transformation into practice. This review has been conducted with MSK guidelines as an exemplar field for PPI in evidence-based guidelines implementation including a focus on LMICs. Given, the acceptance of meaningful PPI in research, we propose that similar principles involving shared partnership and leadership may contribute to and inform more meaningful engagement and development of innovative, patient-centred implementation of evidence-based guidance for MSK and other conditions.

It will be particularly important for stakeholders (researchers, HCPs and PPI) to come together to establish and agree what guideline implementation should be in practice. This will form a basis for the reporting, evaluation of PPI in implementation. Communities of practice can then be formed to contextualise such standards in local settings.

Our PPI co-authors emphasise the need for a pathway to establishing and agreeing outcomes of consultations. They proposed “a preparing for your appointment type of meetings and leaflets” preferably lay-led, pre-clinical consultations to make patients aware of guidelines but also assist them and HCPs to work together, maximising consultation. This might also be helpful in low-resource settings were cultural contexts, power imbalances between patients, health literacy issues impact quality of care. It is our hope that this review will initiate and/or contribute to:

• 1. discussions regarding development of practical solutions for minimising the research-practice gap for MSK conditions globally,

• 2. highlight the need for maximising public partnership (beyond collaborations for health research) as a way to advance evidence-based guidance implementation

• 3. development of innovative models for advancing PPI in evidence-based guideline implementation and, consequently, enable swifter, broader uptake and more sustained use of best evidence in healthcare delivery.

Conclusion

Whilst many clinical guidelines provide recommendations regarding best practice (i.e., what to do) for the care of MSK conditions, they often fail to address how to operationalise these recommendations into clinical practice. Evidence-based management of chronic MSK conditions moves beyond clinical settings where context is key. This review highlights knowledge, skills and practice gap for PPI in implementation of evidence-based guidelines for MSK conditions. The ‘Alliance conceptual framework for PPI in guideline implementation’ though subject to more formal development and refinement, is applicable to varying services/care pathways and can be relevant even in low resource settings. We call on relevant stakeholders to prioritise efforts to help to bridge the evidence-practice gap and to improve quality of care for musculoskeletal patients globally through novel partnerships together with PPI.

Appendix 1: Full Medline search strategy (adapted for other databases)

• 1. Musculoskeletal Diseases/

• 2. (musculoskeletal or MSK).ab,kf,ti.

• 3. (chronic adj3 pain).ab,kf,ti.

• 4. ((multisite or "multi site") adj3 pain).ab,kf,ti.

• 5. pain syndrome$.ab,kf,ti.

• 6. (back adj3 pain*).ab,kf,ti.

• 7. (neck adj3 pain*).ab,kf,ti.

• 8. (shoulder adj3 pain*).ab,kf,ti.

• 9. (knee adj3 pain*).ab,kf,ti.

• 10. (joint adj3 pain*).ab,kf,ti.

• 11. exp Musculoskeletal Pain/

• 12. exp Back Pain/

• 13. Neck Pain/

• 14. knee pain.mp.

• 15. arthriti$.ab,kf,ti.

• 16. osteoarthr$.ab,kf,ti.

• 17. arthralgi$.ab,kf,ti.

• 18. Rheumatology/

• 19. rheumat$.ab,kf,ti.

• 20. (joint$ adj3 disease$).ab,kf,ti.

• 21. 1 or 2 or 3 or 4 or 5 or 6 or 7 or 8 or 9 or 10 or 11 or 12 or 13 or 14 or 15 or 16 or 17 or 18 or 19 or 20

• 22. Community Participation/

• 23. Patient Participation/

• 24. 22 or 23

• 25. (patient* adj1 (participat* or involv* or engag* or partnership or partners or collaborat* or consult*)).ab,ti.

• 26. (public adj1 (participat* or involv* or engag* or partnership or partners or collaborat* or consult*)).ab,ti.

• 27. (user* adj1 (participat* or involv* or engag* or partnership or partners or collaborat* consult*)).ab,ti.

• 28. (service user* adj1 (participat* or involv* or engag* or partnership or partners or collaborat* or consult*)).ab,ti.

• 29. (consumer* adj1 (participat* or involv* or engag* or partnership or partners or collaborat* or consult*)).ab,ti.

• 30. (lay adj1 (participat* or involv* or engag* or partnership or partners or collaborat* or consult*)).ab,ti.

• 31. (citizen* adj1 (participat* or involv* or engag* or partnership or partners or collaborat* or consult*)).ab,ti.

• 32. (carer* adj1 (participat* or involv* or engag* or partnership or partners or collaborat* or consult*)).ab,ti.

• 33. (caregiver* adj1 (participat* or involv* or engag* or partnership or partners or collaborat* or consult*)).ab,ti.

• 34. (customer* adj1 (participat* or involv* or engag* or partnership or partners or collaborat* or consult*)).ab,ti.

• 35. (client* adj1 (participat* or involv* or engag* or partnership or partners or collaborat* or consult*)).ab,ti.

• 36. (community* adj1 (participat* or involv* or engag* or partnership or partners or collaborat* or consult*)).ab,ti.

• 37. (stakeholder* adj1 (participat* or involv* or engag* or partnership or partners or collaborat* or consult*)).ab,ti.

• 38. ((patient* and public) adj1 (involv* or participat* or engag* or partnership or partners or collaborat* or consult*)).ab,ti.

• 39. (user led or user-led or lay control or user control).ab,ti.

• 40. ((representative* or patient representative* or patient advocate* or expert by experience or famil* or relative* or survivor*) adj1 (participat* or involv* or engag* or partnership or partners or collaborat* or consult*)).ab,ti.

• 41. ((patient* or consumer* or citizen* or advisory) adj1 board*).ab,ti.

• 42. ((patient* or consumer* or citizen* or advisory) adj1 group*).ab,ti.

• 43. ((patient* or consumer* or citizen* or advisory) adj1 panel*).ab,ti.

• 44. (citizen* adj1 (jury or juries)).ab,ti.

• 45. 24 or 25 or 26 or 27 or 28 or 29 or 30 or 31 or 32 or 33 or 34 or 35 or 36 or 37 or 38 or 39 or 40 or 41 or 42 or 43 or 44

• 46. Practice Guideline/

• 47. exp Health Planning Guidelines/

• 48. guideline$1.kf,ti.

• 49. guidance.kf,ti.

• 50. standards.kf,ti.

• 51. ((practice or treatment$ or clinical) adj standard).kf,ti.

• 52. recommendation$1.kf,ti.

• 53. ((practice or treatment$ or clinical) adj3 consensus).kf,ti.

• 54. (practice adj (guideline$1 or guidance or standard$1 or recommendation$1)).ab.

• 55. (clinical adj (guideline$1 or guidance or standard$1 or recommendation$1)).ab.

• 56. (treatment$ adj3 (guideline$1 or guidance or standard$1 or recommendation$1)).ab.

• 57. (CPG or CPGs).kw,ti.

• 58. Critical Pathways/

• 59. position statement$1.ab,kw,ti.

• 60. position statement$1.ab,kw,ti.

• 61. (practice adj3 parameter$1).ab,kw,ti.

• 62. (((critical or clinical or practice) adj3 (path$1 or pathway$1 or protocol$1)) and (guideline$1 or guidance or standard$1 or recommendation$1)).ab.

• 63. ((care adj3 (path$1 or pathway$1 or map$1 or plan or plans)) and (guideline$1 or guidance or standard$1 or recommendation$1)).ab.

• 64. ((care adj3 standard$1) and (guideline$1 or guidance or recommendation$1)).ab.

• 65. (("National Institute for Health and Care Excellence" or NICE) and (guideline$1 or guidance or recommendation$1)).ab,ti.

• 66. ((EULAR or "European League against Rheumatism") and (guideline$1 or guidance or recommendation$1)).ab,ti.

• 67. ((OARSI or "Osteoarthritis Research Society International") and (guideline$1 or guidance or recommendation$1)).ab,ti.

• 68. ((RCGP or "Royal College of General Practitioners") and (guideline$1 or guidance or recommendation$1)).ab,ti.

• 69. ((CSP or "Chartered Society of Physiotherapy") and (guideline$1 or guidance or recommendation$1)).ab,ti.

• 70. consensus development conference.pt.

• 71. 46 or 47 or 48 or 49 or 50 or 51 or 52 or 53 or 54 or 55 or 56 or 57 or 58 or 59 or 60 or 61 or 62 or 63 or 64 or 65 or 66 or 67 or 68 or 69 or 70

• 72. 21 and 45 and 71