Abstract
Background
Patient and stakeholder engagement (PSE) in research is increasingly recognized as essential to producing relevant, ethical, and impactful health studies. While PSE has advanced in many fields, its application in osteoarthritis (OA) research remains poorly defined.
Objective
This scoping review aimed to map the landscape of patient engagement in OA research, identify existing models and frameworks, and assess their characteristics and implementation.
Methods
Following the Arksey and O’Malley framework and PRISMA-ScR guidelines, a search was conducted across PubMed, Embase, CINAHL, Cochrane Library, and Web of Science (until March 2025). Eligible studies reported on active patient involvement—beyond participation—in OA research processes. Data extraction and synthesis were performed by independent reviewers.
Results
Of 64 screened records, seven studies met inclusion criteria. These studies highlighted varying degrees of patient involvement, ranging from consultative roles to active co-production. Key enablers included early involvement, clear role definition, adequate training and compensation, and mutual trust. Reported benefits included improved study design, increased relevance and adherence, and enhanced dissemination. However, engagement remained inconsistent, particularly in translational research, and challenges persisted around inclusivity, resource allocation, and methodological standardization.
Conclusions
PSE in OA research offers considerable promise but remains underutilized. Structured frameworks and institutional support are needed to move from tokenistic inclusion toward meaningful, equitable partnerships. Patient engagement can humanize research, reduce waste, and bridge the gap between scientific inquiry and lived experience, particularly crucial in chronic, heterogeneous conditions such as OA.
Supplementary Information
The online version contains supplementary material available at 10.1186/s13018-025-06358-y.
Keywords: Patient engagement, OA research, Citizen science, Scoping review, Patient-oriented research, Stakeholder involvement
Introduction
Patient and stakeholder engagement (PSE), also referred to as patient and public involvement (PPI), is the active and meaningful involvement of people with lived experience, caregivers, and community representatives as partners in the research process, beyond the role of study participants [1–3]. In this manuscript, an “active role” denotes contributions to governance, priority setting, study design, conduct, interpretation, and dissemination, with shared decision-making power and appropriate support (training, compensation, and feedback) [4, 5]. In health research, the term “citizen science” is used to describe the participation of non-professional contributors in generating, refining, and translating knowledge; here we use it in the specific sense of patient-led or patient-partnered research within osteoarthritis (OA) [6].
Why engagement matters Meaningful PSE is associated with better problem selection, more feasible protocols, stronger recruitment and retention, and clearer dissemination—thereby improving the relevance, ethics, and impact of health research. Principles commonly highlighted across guidance and reviews include early involvement, clarity of roles, equitable partnerships, transparency, and ongoing evaluation [7, 8].
Patient involvement spans escalating levels, from consultation to advice, collaboration (with Patient Research Partners in parity roles), and even control by patient organizations, directing questions, studies, and data stewardship [9–11]. Engagement can shape the agenda setting, prioritization of research questions, study implementation, review/use of results, and dissemination. The main phases of patient involvement in research are explained in Online Appendix I [9, 12, 13].
To avoid tokenism, roles and expectations must be explicit, underpinned by mutual trust, equitable power, transparent processes, integrity and confidentiality, and access to training/education [9, 14].
Institutions increasingly scrutinize proposals (e.g., Institutional Review Boards, IRBs), and many funders now require PPI/PSE in protocols. Common evaluation parameters include local relevance and community dissemination, co-learning and capacity building, equitable partnerships, and planning for long-term commitments [4, 15].
Why OA OA is highly prevalent and burdensome, with substantial personal, social, and economic consequences. Recent global estimates indicate hundreds of millions of people are affected, with rising prevalence and considerable direct and indirect costs. Global OA prevalence has increased to 2020 by over 132% since 1990; in 2020, 7.6% of the global population, or 595 million people, were affected by OA; in Europe and the US, and other first-world countries with higher life expectancy, a percentage ranging from 10 to 17% of the population was diagnosed with OA, according to several studies [16, 17].
This burden in terms of affected patients and their needs can increase the economic impact of OA. This is, in fact, substantial, ranging from 1 to 2.5% of total gross national product (GNP) in developed countries. Epidemiologic transition, ever-increasing ageing and lifestyle changes in the general population (increased obesity, diabetes, etc.) may result, in the future, in higher demand for OA-related healthcare, even in a younger-age population. OA prevalence in the working-age population has, in fact, also seen a substantial rise, with a 116.16% increase between 1990 and 2021, according to Nature [18–20].
Management is multimodal High-value care draws first on conservative strategies (education, weight management, physical activity/physiotherapy, bracing and assistive devices), considers pharmacological options when indicated, and reserves surgery for selected cases—approaches synthesized in contemporary clinical guidelines (e.g., OARSI, ACR, ESCEO). Aligning research priorities, outcomes, and implementation strategies with what matters to people living with OA is therefore essential to reduce waste and inequities and to accelerate translation [21–24].
What is known—and what is missing In rheumatology, patient partners remain underrepresented, especially in translational studies, despite growing policy emphasis and demonstrated benefits [25].
Within OA specifically, evidence is scattered across commentaries, case reports, and focused evaluations, and there has been no consolidated map of how patients have been engaged across the OA research spectrum, where engagement occurs in the research cycle, what models or frameworks are used, and which barriers and enablers are reported. This gap hampers coordinated improvement and the adoption of consistent, evaluable practices in OA research.
Why a scoping review A scoping approach is suited to clarifying concepts and definitions, mapping the extent and nature of activity, and identifying knowledge gaps in an emerging, heterogeneous field. Following the Arksey and O’Malley framework and the PRISMA-ScR reporting guidance, we sought to provide a structured overview that can inform future research, reporting, and evaluation [26, 27]. Detailed operational definitions (PSE/PPI terminology) and the engagement typology used for data charting are reported in the Methods section [26, 27].
Objective was to map and synthesize the published literature on patient and stakeholder engagement in OA research, by (1) describing where and how engagement has been operationalized across the research process; (2) identifying the models and frameworks reported; and (3) summarizing reported benefits, challenges, and gaps to guide future OA research and evaluation.
Materials and methods
Study design and reporting
This scoping review followed the methodological framework of Arksey and O’Malley with enhancements from subsequent guidance (identify the question; identify relevant studies; select studies; chart the data; collate, summarize, and report results; optional consultation) [26]. The review is reported in accordance with PRISMA-ScR [27].
Protocol and registration
An a priori protocol defined objectives, eligibility criteria, and analysis plans. The protocol was not publicly registered (e.g., OSF/PROSPERO).
Information sources
We searched MEDLINE (via PubMed), Embase, CINAHL, Cochrane Library, and Web of Science from database inception to 31 March 2025. We also performed backward/forward citation chasing of included records and relevant reviews, and hand searched reference lists [28]. Searches were executed on 15 May 2025. No language or date filters were applied at the search stage; for screening, only records with an English full text were taken forward. The search strategy was drafted by the study team. No formal PRESS peer-review by a medical librarian was undertaken.
Search strategy
The full electronic search for PubMed is provided below (Table 1); strategies were adapted for other databases using appropriate subject headings and syntax. Eligibility criteria are specified in Table 2.
Table 1.
Full PubMed electronic search
|
(osteoarthrit*[tiab] AND (“patient and public involvement”[tiab] OR “patient engagement”[tiab] OR “stakeholder engagement”[tiab] OR “patient research partner”[tiab] OR “patient partners”[tiab] OR “co-design”[tiab] OR “co production”[tiab] OR “co-production”[tiab] OR “citizen science”[tiab] OR “participatory research”[tiab])) NOT (gene*[tiab] OR genomic*[tiab] OR GWAS[tiab] OR polymorphism*[tiab] OR variant*[tiab] OR allele*[tiab] OR exome*[tiab] OR transcriptom*[tiab] OR methylat*[tiab] OR epigen*[tiab]) NOT (animals[mesh] NOT humans[mesh]) |
Table 2.
Eligibility criteria
| Population | Humans with OA of any joint (e.g., knee, hip, hand, foot/ankle, spine), including primary and secondary OA. No age, sex, or geographic restrictions. OA diagnosis as reported by study authors; where provided, definitions aligned with contemporary consensus (e.g., OARSI), and studies focused on other rheumatic diseases without an OA subgroup were excluded. OARSI defines OA as: “a disorder involving movable joints characterized by cell stress and extracellular matrix degradation initiated by micro- and macro-injury that activates maladaptive repair responses including pro-inflammatory pathways of innate immunity. The disease manifests first as a molecular derangement (abnormal joint tissue metabolism) followed by anatomic, and/or physiologic derangements (characterized by cartilage degradation, bone remodeling, osteophyte formation, joint inflammation and loss of normal joint function), that can culminate in illness” [29] |
| Concept |
Patient and stakeholder engagement (PSE)/patient and public involvement (PPI) in research—i.e., the active and meaningful involvement of people with lived experience, caregivers, advocates, and community representatives beyond the role of study participants across any research stage (governance, priority setting, study design, conduct, interpretation, dissemination) We operationalized “meaningful engagement” using the domains of the Patient Engagement In Research Scale (PEIRS) to guide data charting (e.g., purpose, support, reciprocal relationships, influence/power‐sharing), and we used the GRIPP2-SF items as a reporting lens when abstracting engagement activities [30, 31] |
| Context | Any country, care setting, or research environment; no limits on funding source or sector |
| Sources of evidence | Primary empirical studies (qualitative, quantitative, mixed-methods, trials and non-trial designs) and non-empirical sources (e.g., consensus/guidance or commentaries) were eligible if they described structured engagement approaches/models relevant to the conduct of OA research. Animal/in vitro studies, editorials without engagement content, and conference abstracts without full text were excluded |
Study selection process
Records were exported and de-duplicated, then screened independently in duplicate by two reviewers (M.R., R.F.) at title/abstract level against PCC criteria. Records deemed potentially eligible were retrieved in full text and assessed independently by the same two reviewers; disagreements were resolved by discussion or by a third reviewer (D.C.). Reasons for exclusion at full text were documented. The study selection is summarized in a PRISMA flow diagram.
Data charting and extraction
We developed and piloted a standardized charting form. Two reviewers independently extracted data from each included source; discrepancies were resolved by discussion or third-reviewer adjudication. Extracted variables included: bibliographic/study characteristics (authors, year, country, design, setting, funding/sector); OA population (joint(s), primary/secondary OA, sample descriptors); engagement details (stage(s) of involvement in the research cycle; who was engaged and how they were recruited; roles, power-sharing/decision authority; training/support and compensation; communication/feedback mechanisms; time/resources); frameworks or tools used (e.g., PEIRS, GRIPP2); evaluation of engagement (barriers/facilitators, enablers, measures used, any PEIRS-mapped elements, reported impacts on study design/conduct/outcomes); and equity considerations (e.g., diversity of patient partners, accessibility).
Data synthesis
Given heterogeneity across sources, we performed descriptive mapping of engagement activities across research stages, accompanied by a qualitative thematic synthesis of barriers/enablers and reported impacts. Engagement elements were mapped to PEIRS domains to structure interpretation of “meaningfulness,” and GRIPP2-SF items informed reporting of extracted engagement activities. No meta-analysis or formal risk-of-bias assessment was undertaken, consistent with scoping review objectives.
Management of records and data
Screening and data management were conducted in Covidence (www.covidence.org).
Ethics approval
Only publicly available, published data were analyzed; ethics approval was not required.
Results
Study selection
Across databases and other sources, 64 records were identified before deduplication (databases: MEDLINE/PubMed, Embase, CINAHL, Cochrane Library, Web of Science; other sources: citation chasing and handsearching). After a control for any possible duplicates, 64 unique records were screened at title/abstract. 15 full texts were then retrieved and assessed for eligibility; 8 were excluded with reasons (see PRISMA flow in Fig. 1). 7 sources met inclusion criteria and were included in the synthesis.
Fig. 1.
PRISMA flow diagram. Report counts for: records identified (database + other), duplicates removed, records screened, full texts assessed, full texts excluded with reasons, and included sources
Study characteristics
Online Appendix II summarizes characteristics of included sources and manuscripts. Publication years ranged from 2016 to 2024, spanning several countries and varied settings (academic, clinical, community). Designs included qualitative (e.g., interviews, focus groups), quantitative, mixed-methods, methodological/organizational case descriptions, and trials with embedded engagement.
Synthesis of patient and stakeholder engagement (PSE) across the research cycle
Where engagement occurred
Engagement was most frequently reported in priority setting and study design/protocol development, with fewer instances in data analysis/interpretation and governance/decision-making. Engagement in dissemination/knowledge translation was common but variably described. Patients are integrated into organizations like OMERACT (Outcome Measures in Rheumatology) in biennial conferences, working groups, and various committees to shape research and develop Core Outcome Sets (COS). In research consortia, such as the APPROACH project, Patient Councils are established at project initiation and are fully involved in providing input on clinical protocols, communicating with study participants, and disseminating results and advocating for the project [32–34].
Who was engaged and in what roles
Most sources engaged people with lived experience of OA as patient partners; several also included caregivers or advocacy/community representatives. Roles ranged from advisory (e.g., steering committees, working groups) to co-creation roles (co-authors, co-investigators). Explicit decision-authority/power-sharing was infrequently specified. Patient Research Partners (PRPs) can be included within organizations like OMERACT (Outcome Measures in Rheumatology), EULAR, and GRAPPA, who function as equal members of research teams [33, 34].
Support, training, and compensation
Reporting on training and support for partners was inconsistent. Where described, supports included orientation sessions, written role descriptions, and ongoing facilitation. Compensation (financial or in-kind) was reported inconsistently, with amounts and mechanisms rarely specified. This can take the form of honorariums (e.g., $100 CAD per month for patient leaders, $100 CAD gift cards per focus group), direct payments, compensation for time commitment or coverage for travel costs, parking, and other related expenses to attend meetings or participate in activities [35].
Frameworks, tools, and reporting guidance
Few sources explicitly operationalized a validated framework or instrument. Where stated, tools included the PEIR Framework/Plan Guide, the PEIRS-22 measurement instrument for meaningful engagement, and the GRIPP2 reporting checklist. Terminology and operational definitions varied widely across sources. The PEIRS-22 instrument, for example, used to assess effective patient engagement, was recommended for use and implementation by OMERACT to enhance and accurately measure PRP engagement. Its use was even suggested by participants during the OMERACT 2023 session as a way to make PRPs feel more valued [30, 33].
Reported impacts of engagement
Studies described multiple impacts attributed to engagement: refinement of research priorities and questions; improved recruitment/retention strategies; enhanced outcome relevance (e.g., inclusion of pain/function/participation outcomes prioritized by patients); adjustments to materials and procedures to improve feasibility and accessibility; and strengthened dissemination through co-authorship and patient-led presentations. Systematic, instrument-based evaluation of engagement (e.g., PEIRS-22) was uncommon. Patient feedback can lead to significant changes in study protocols, making them more practical and less burdensome for participants. In the APPROACH project, patients suggested changes to fasting blood sample collection due to travel times and advocated for in-home blood draws. In another study, patients helped refine the medication use survey and recommended an in-person brace fitting model for better participant experience [32].
Barriers and enablers
Commonly reported barriers included limited resourcing and time, unclear expectations, and challenges sustaining engagement across long timelines. A common issue is the lack of appropriate funding for patient involvement. While good practice suggests offering honorarium payments and covering travel costs, these are not always initially accounted for. Compensation for participation is an area that requires attention. Meaningful patient engagement requires additional time, effort, and resources for recruitment, onboarding, relationship-building, training, and careful consideration of feedback. Setting up a functional Patient Council (PC) does not happen overnight and needs proper preparation and coordination, costing significant time and effort. An unanticipated workload for PRPs and researchers can also make it difficult to maintain their motivation to collaborate [32].
Enablers included early involvement, clear role descriptions, dedicated facilitation, capacity-building/training, and recognition/compensation. Equity-oriented practices (e.g., accessibility, diversity of partners) were variably addressed and seldom measured. Early involvement ensures that research addresses patient-identified priorities and enhances patient engagement and connectedness through shared decision-making. Providing individualized support and training tailored to patients' needs (e.g., training sessions, videos, info-sheets, one-to-one support) is crucial. Equally important is training researchers on how to effectively engage patients and integrate diverse perspectives [3, 8, 14, 25, 36].
Discussion
Principal findings
This scoping review maps how patient and stakeholder engagement (PSE) has been conceptualized and operationalized within OA research. Across included sources, engagement most commonly occurred upstream—in priority setting and study design/protocol development—while governance/decision-making and data analysis/interpretation were far less frequently reported. Descriptions of training/support and compensation for partners were inconsistent, and explicit statements about decision authority/power-sharing were uncommon. Only a minority of sources reported using validated frameworks or tools (e.g., PEIRS for assessing meaningful engagement, GRIPP2 for reporting), and instrument-based evaluation of engagement was rare. Reported impacts of engagement included better alignment of research questions and outcomes with patient priorities, improvements in recruitment and materials, and richer dissemination pathways; however, the strength of evidence for impact was limited by heterogeneous designs and sparse use of standardized measures. Considerations of equity, diversity, and accessibility were variably addressed and infrequently evaluated [11, 32, 35, 37, 38].
Comparison with the wider literature
Our observations are consistent with patterns described in rheumatology and other fields: engagement is increasing but remains uneven across the research cycle, and reporting often lacks detail on partner roles, supports, and influence. Within rheumatology, initiatives such as OMERACT have developed structures for patient research partner (PRP) involvement and recently reported using tools like the PEIR Framework/Plan Guide and PEIRS-22 to strengthen and measure engagement, illustrating how formalized approaches can improve clarity and evaluability. In health research more broadly, the GRIPP2 checklists have improved transparency of PPI reporting but are not yet consistently adopted. Together, these strands align with our OA-specific map: where frameworks are used, reporting and interpretability improve; where they are absent, comparability and cumulative learning suffer [33, 39].
Implications for OA research, funding, and publishing
First, researchers should plan engagement across the full research cycle, including governance and analysis, not only priority setting and design. Second, studies should budget for and document partner training/support and compensation, clearly articulating decision-making roles and pathways for feedback. Third, the use of validated frameworks (e.g., mapping activities and evaluation to PEIRS domains and reporting against GRIPP2) can provide common structure and facilitate synthesis. Fourth, equity should be addressed explicitly through inclusive recruitment, accessible formats, and monitoring of partner diversity and accessibility needs. Finally, funders and journals can accelerate progress by requiring structured PSE plans, encouraging the use of standardized reporting, and supporting dissemination products co-authored with patient partners [40].
In OA, engagement works best as a longitudinal partnership rather than a one-off touchpoint, reflecting the condition’s chronic, fluctuating course. Because OA varies by joint and phenotype, partner selection should mirror that heterogeneity, and—given the frequent mismatch between symptoms and imaging—patients help shift emphasis from radiographs to outcomes that matter: pain, function, participation, fatigue, and sleep [41–43]. The multimodal nature of OA care calls for multidisciplinary research with patient partners embedded alongside physiotherapy, pharmacology, bracing, and surgical teams. Since behavioral change underpins benefit, co-design developed with patients strengthens the feasibility of exercise and weight-loss interventions and the support around them [44]. Equity barriers—age, multimorbidity, mobility limits, and cost—need practical solutions such as accessible formats, compensation, and transport. For surgical pathways, codesigning decision contexts and recovery outcomes makes evaluations more meaningful. Finally, implementation should be co-created for primary care and community settings, including testing digital tools, and—where relevant—bringing caregivers into the process, using co-developed Patient-Reported Outcomes (PROs) and Patient-Reported Experience Measures (PREMs) tailored to OA.
Strengths and limitations of this review
This review offers a structured, OA-focused map of engagement activities, anchored to established PPI instruments (PEIRS; GRIPP2) and compiled through screening and charting in duplicate using predefined criteria. The work is reported in accordance with PRISMA-ScR and follows the Arksey and O’Malley scoping methodology [26, 27, 40].
Several limitations warrant consideration. The protocol was not publicly registered, and our search, while multi-database and supplemented by citation chasing and handsearching, did not undergo formal librarian (PRESS) peer review. We restricted inclusion to English full texts, which may have excluded relevant work. Although we aimed to be comprehensive, some sources—particularly grey literature or OA-relevant engagement reported within broader musculoskeletal contexts—may have been missed. Heterogeneity in designs and outcomes precluded quantitative synthesis, consistent with scoping aims. Importantly, we treat variability in definitions and operationalization of engagement as an expected feature of the landscape rather than a limitation; capturing and organizing this variability is precisely the purpose of a scoping review.
Future directions
Priority areas include (1) prospective use and reporting of PEIRS and GRIPP2 to enable comparison and meta-synthesis of engagement outcomes; (2) rigorous assessment of impacts on study design, recruitment/retention, outcome relevance, and implementation, using common metrics; (3) development of OA-specific guidance for engagement across translational phases; and (4) embedding equity and accessibility metrics within engagement evaluation. Collaboration with information specialists to design and peer-review search strategies, and public registration of protocols, will further strengthen the evidence base.
Conclusions
Patient and stakeholder engagement in OA research is growing but uneven, concentrated in early research stages with limited reporting of decision authority, support, compensation, and evaluation. Adoption of validated frameworks and reporting tools (PEIRS; GRIPP2), explicit planning for engagement across all stages—including governance and analysis—and attention to equity and accessibility can improve the meaningfulness, transparency, and impact of partnerships. Strengthening search methods (with librarian input) and publicly registering protocols will improve future reviews. As OA continues to impose a substantial global burden, co-produced research grounded in robust engagement practices is essential to prioritize what matters to people living with OA and to accelerate translation into high-value care [9, 10]. An OA-patients’ association, such as Associazione Movimento Artrosi (AMA) from Italy, can turn digital health from a technical upgrade into a social contract. By teaching members how to use the latest technology for clinical engagement, and lobbying for patient advocacy, it amplifies individual engagement into collective leverage. Patient-led focus groups and advocate training enhance accessibility, privacy and reduce real-world burden; transparent funding shields trust. In short, the Citizen Science association can play the role of navigator watchdog and co-creator, granting a unique piece of knowledge and ensuring that new digital touchpoint deepens partnership rather than widening the digital divide.
Supplementary Information
Below is the link to the electronic supplementary material.
Acknowledgements
We are grateful to Dr. Monique Chevalley for secretarial assistance.
Author contributions
MR and RF entered the database searches and selected the Articles. MR wrote the manuscript text. DC and RF reviewed the manuscript.
Funding
Funding was provided by Associazione Movimento Artrosi Italian Association (AMA).
Data availability
No datasets were generated or analysed during the current study.
Declarations
Competing interests
The authors declare no competing interests.
Footnotes
Publisher’s note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
No datasets were generated or analysed during the current study.