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Policies in Canada fail to address disparities in access to person-centred osteoarthritis care: a content analysis
BMC Health Services Research volume 24, Article number: 522 (2024)
Abstract
Background
Women are disproportionately impacted by osteoarthritis (OA) but less likely than men to access OA care, particularly racialized women. One way to reduce inequities is through policies that can influence healthcare services. We examined how OA-relevant policies in Canada address equitable, person-centred OA care for women.
Methods
We used content analysis to extract data from English-language OA-relevant documents referred to as policies or other synonymous terms published in 2000 or later identified by searching governmental and other web sites. We used summary statistics to describe policy characteristics, person-centred care using McCormack’s six-domain framework, and mention of OA prevalence, barriers and strategies to improve equitable access to OA care among women.
Results
We included 14 policies developed from 2004 to 2021. None comprehensively addressed all person-centred care domains, and few addressed individual domains: enable self-management (50%), share decisions (43%), exchange information (29%), respond to emotions (14%), foster a healing relationship (0%) and manage uncertainty (0%). Even when mentioned, content offered little guidance for how to achieve person-centred OA care. Few policies acknowledged greater prevalence of OA among women (36%), older (29%) or Indigenous persons (29%) and those of lower socioeconomic status (14%); or barriers to OA care among those of lower socioeconomic status (50%), in rural areas (43%), of older age (37%) or ethno-cultural groups (21%), or women (21%). Four (29%) policies recommended strategies for improving access to OA care at the patient (self-management education material in different languages and tailored to cultural norms), clinician (healthcare professional education) and system level (evaluate OA service equity, engage lay health leaders in delivering self-management programs, and offer self-management programs in a variety of formats). Five (36%) policies recommended research on how to improve OA care for equity-seeking groups.
Conclusions
Canadian OA-relevant policies lack guidance to overcome disparities in access to person-centred OA care for equity-seeking groups including women. This study identified several ways to strengthen policies. Ongoing research must identify the needs and preferences of equity-seeking persons with OA, and evaluate the impact of various models of service delivery, knowledge needed to influence OA-relevant policy.
Background
Osteoarthritis (OA) is defined as a primarily degenerative, sometimes inflammatory disease characterised by stiffness, inflammation, and physical and psychological impairments [1]. The Global Burden of Disease Study reported that prevalent cases of OA increased globally by greater than 113% over three decades, more than doubling from 247.51 million cases in 1990 to 527.81 million cases in 2019 [2]. OA prevalence is expected to increase, particularly for knee and hip joints [2]. OA can lead to poor quality of life, depression, diabetes, and heart disease; thus, early diagnosis and management are critical [3]. While guidelines vary, initial management (often referred to as first-line) for hand, hip and knee OA typically includes physical activity, pharmacologic and non-pharmacologic pain control, and self-management programs [4]. Subsequent or second-line therapy may include surgery or joint replacement [4].
Compared to men, OA is more prevalent and severe among women [2]. Women also experience a greater number of OA-related comorbid conditions compared to males [5]. However, women are less likely than men to receive early diagnosis and management of OA, and this is particularly true among racialized or immigrant women [6,7,8,9,10], many of whom may refrain from seeking care due to poor healthcare experiences [11]. Furthermore, many racialized or immigrant women have low rates of physical activity, an important first-line strategy to mitigate OA, due to numerous gendered, cultural and socioeconomic factors [12]. Hence, efforts are needed to improve access to and quality of OA care for diverse women.
A 2023 scoping review identified only 11 studies published after 2009 on interventions to reduce inequities in OA care among equity-seeking groups, of which only 2 focused soley on women [13]. Interventions largely consisted of OA self-management education, often delivered in community settings, which improved patient knowledge-based, behavioural and clinical outcomes [13]. Despite these promising findings, no interventions addressed other factors that contribute to inequitable OA care for diverse women. This is a notable gap because considerable research shows that barriers of OA care exist not only at the patient level, but also at the clinician (e.g. OA not considered serious, lack of time) and healthcare system levels (cost of therapies not covered, service availability) [14, 15]. It appears that complex, interacting, multi-level determinants may influence access to and quality of OA care. Thus, self-management education alone is not likely to greatly reduce inequities experienced by diverse women. Other research generated insight on what constitutes person-centred OA care. Consultations with 26 patients with OA and 147 healthcare professionals of 18 disciplines in 31 countries generated 70 quality indicators of person-centred OA care (e.g. identify the financial burden of treatment and patient preferences when planning care) [16]. Systematic review and expert consensus were used to generate 56 quality indicators of person-centred OA care [17]. Another systematic review and engagement of patients with OA resulted in 15 quality indicators of person-centred OA care [18]. While important to set standards, these initiatives did not identify concrete strategies needed to achieve these person-centred quality indicators, which may require healthcare system reforms [19].
A review of 24 systematic reviews including a total of 128 primary studies spanning eight public health domains (e.g. tobacco, food and nutrition, control of infectious diseases, screening) revealed that policies were more beneficial for reducing or preventing health inequities than educational campaigns, underscoring the important role of healthcare policies in shaping the organization and delivery of services [20]. “Policies” refers to documents, possibly labelled as policy, decision, plan, framework, strategy or synonymous term, that are generated by government or governmental agencies to guide the planning, funding, organization, delivery or improvement of healthcare programs or services [21]. Given the critical role of policies in promoting equitable access to high-quality care [20], perhaps in combination with other strategies, the overall aim of this study was to examine the content of policies for strategies that improve OA care for all. This is germane in Canada, where a large proportion of the population is comprised of immigrants [22], and where research showed that women experienced disparities in access to and quality of OA care [6]. The specific purpose of this study was to describe whether and how policies developed by Canadian governmental and other organizations (e.g. inter-sectoral consortia, advocacy groups) recognize and address equitable, person-centred OA care for diverse women. This knowledge could provide direction for strengthening policies in Canada, and possibly elsewhere, so as to ultimately improve OA care.
Methods
Approach
We used content analysis of policy documents to identify details related to strategies that support equitable, person-centred OA care, an approach that is commonly used to describe explicit information in any form of communication [23, 24]. Our approach was manifest, which refers to extracting and reporting explicit content. This approach involves both deductive and summative analysis to first organize content into categories (deductive), and then counting and comparing categories across policies (summative) [23, 24]. We did not require research ethics board approval because documents were publicly available. To enhance rigour, multiple team members (AA woman graduate student, MT woman research associate, ARG woman principal investigator) independently analyzed, then compared data to resolve discrepancies through discussion. Data were reviewed by the larger research team that included a 13-member advisory group of diverse women with lived experience of OA (ages 53 to 84; 10 to 40 + years with OA; OA of the back, hands, hips, knees, neck and sholders; 2 Ugandan, 2 Chinese, 1 Filipino, 1 Indigenous and 7 White/European), healthcare professionals (family physician, rheumatologists, physiotherapist, pharmacist) and health services researchers with expertise in the topics of OA, person-centred care, equity and women’s health. These differing characteristics and roles, and interaction among members of the research team throughout the study, contributed to a balance of perspectives in interpreting data.
Eligibility
Additional File S1 describes detailed eligibility criteria, informed by prior research on OA disparities among women [13] and what constitutes person-centred care for women and persons with OA [16,17,18, 25, 27, 28]. Regarding population, eligible policies were aimed at clinicians (e.g. family physicians, nurse practitioners, rheumatologists, physical/occupational therapists, registered massage therapists, community pharmacists) or decision-makers (e.g. healthcare executives, managers, leaders), and pertained to prevention, diagnosis, treatment, management or support of adults aged 18 + with OA. While our focus was equitable OA care for diverse women, preliminary exploratory searching revealed few policies specific to women, so we included policies relevant to anyone with OA. Regarding issue, we included English- and French-language Canadian policies that focused on or included OA produced by government (e.g. national, provincial, territorial ministries of health), governmental agencies (e.g. quality councils) or other organizations (e.g. academic consortia). Regarding comparisons, policies included documents labelled as policy, strategy, platform, decision, plan, report, framework or other synonymous term that described, compared or analyzed guidance or recommendations for the planning, funding, organization, delivery or improvement of healthcare programs or services. Regarding outcomes, we adopted a broad scope, including policies that identified problems and/or solutions. We excluded clinical guidelines and health technology assessments, which largely focus on recommendations for front-line care, and policies that focused only on rheumatoid, inflammatory or juvenile arthritis. We also excluded documents that solely offered an inventory of existing programs or resources.
Searching and screening
Additional File S2 describes the comprehensive search strategy in detail. In brief, we searched Canadian government web sites and Google to identify potentially relevant Canadian policies from May 18 to June 29, 2022. AA and MT independently conducted searches, and together compiled results in an Excel file, noting organization, document title and web site address, then independently screened full-text documents against eligibility criteria, and consulted with ARG to resolve discrepancies through discussion. To compile policies, we visited each federal, provincial and territorial government web site to both browse the navigation system (e.g. reports or publications menu item) and search the web site using the keywords “osteoarthritis or arthritis”. By browsing the navigation system and searching for the broader term “arthritis”, we identified any relevant policies labelled with other terms referring to joint disease. In Google, we executed multiple searches using the keywords “arthritis or osteoarthritis” alternately combined with policy, decision, plan, report, guide, framework or strategy, and scanned 60 results for each search combination, after which relevancy of the search results diminished. We also screened the references in all eligible policies.
Data collection
With respect to deductive content analysis, we extracted data on policy characteristics, strategies to support person-centred OA care and strategies to support equitable access to OA care. Characteristics included year of publication, publishing organization, document structure (e.g. number of pages, sections), policy objective, target audience and methods used to develop the policy (Additional File S3). Person-centred care (PCC) referred to content related to the components of an existing PCC framework that we chose because it was rigorously developed [25], more elaborate than other general PCC frameworks [26], inclusive of approaches deemed essential to person-centred OA care [16,17,18] and found to be relevant through our prior work on what constitutes PCC for diverse women [27, 28]. The framework we employed includes six domains: foster a healing relationship, exchange information, respond to emotions, manage uncertainty, share decisions and enable self-management (Additional File S4). Equitable access referred to any mention of OA prevalence by intersectional factors (e.g. gender, age, ethno-cultural group, socio-economic status or other vulnerable group), barriers of OA care by intersectional factors, or strategies at any level (e.g. patient, clinician, organization, system) needed or recommended to improve access to person-centred OA care for any equity-seeking group including but not limited to persons by age, sex/gender, geographic location, socioeconomic status or ethno-cultural group, which refers to ethnicity or country of origin (Additional File S5). As a pilot test, AA, MT and ARG independently extracted data from three policies, then compared and discussed results to establish a shared understanding of data extraction. Thereafter, AA extracted data from remaining policies, periodically consulting with MT and ARG to resolve uncertainties. We did not assess the quality of policies.
Data analysis
With respect to summative content analysis, we used summary statistics to describe policy characteristics, and the number of policies that included mention of the prevalence of OA or barriers to OA care by intersectional factors, person-centred OA care, strategies to improve equitable access to OA care, and research recommendations. We summarized data in tables and text with exemplar content extracted from policies.
Results
Policy characteristics
Additional File S3 includes data on policy characteristics and Table 1 provides a summary.
We included 14 policies ranging from 6 to 146 pages published from 2004 to 2021 [29,30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45]. One policy [33] spanned 3 documents [33,34,35] and another spanned 2 documents [36, 37]. They were developed by government (5, 35.7%), knowledge translation (3, 21.4%), multi-sector (3, 21.4%), charitable (1, 7.1%), academic (1, 7.1%) or patient advocacy (1, 7.1%) organizations. Most policies addressed arthritis in general (10, 71.4%) and 4 (28.6%) were specific to OA. Policy objectives were to outline recommendations (8, 57.1%), strategic plans (4, 28.5%) or summarize data (2, 14.2%). Policy topics included OA awareness, prevention, diagnosis and/or management (9, 62.3%), wait times for joint replacement surgery (4, 28.6%) or OA self-management (1, 7.1%). Twelve (85.7%) policies were based on key informant consultation (9, 64.2%), review of prior research or reports (2, 14.2%) or routinely-collected health data (1, 7.1%). No policies were specific solely to women.
Person-centred OA care
Additional File S4 includes all data extracted on person-centred care and Table 2 provides a summary. Among 14 policies, 5 (35.7%) made no reference to PCC [32, 38, 41, 44, 45] and 9 (64.2%) included content related to at least one PCC domain [29,30,31, 33,34,35,36,37, 39, 40, 42, 43]. In those 9 policies, the most frequently included domains were: enable self-management (7, 50.0%), share decisions (6, 42.8%), and exchange information (4, 28.5%). Few policies addressed the domain of respond to emotions (2, 14.3%). No policies included content for the domains foster a healing relationship and manage uncertainty.
Even when mentioned, much of this content was brief or vague, offering little to no concrete description of what should be done to achieve PCC for equity-seeking persons with OA including diverse women or other vulnerable groups. For instance, for the most frequently addressed domain of enable self-management, one policy stated: “Enable self-management by providing on-line and hard copy educational materials for individuals living with arthritis and health care providers” [40]. In contrast, a more informative policy stated: “Work with people with osteoarthritis to support the development of an individualized, goal-oriented self-management plan that gives the person information and advice on the ongoing management of their symptoms and directs them to resources and other supports they may need. [Plans] should include information about how to access local services, such as exercise classes, weight-management programs, and support groups. [Plans] will also need to consider any other medical conditions you have that may impact your goals and abilities. Depending on [the patients] needs, [plans] might also include information about aids and devices such as suitable shoes, leg braces, orthotics, and hand grips” [33].
Equitable access to OA care
Additional File S5 includes all data on OA prevalence and barriers of OA care by intersectional factors, and Table 3 provides a summary. Among 14 policies, 7 (50.0%) acknowledged greater prevalence of OA among particular equity-seeking groups: older age (4, 28.5%), gender, referring to women (5, 35.7%), Indigenous (4, 28.5%) and lower socioeconomic status (2, 14.2%). No policies noted that the burden of OA is greater among racialized or immigrant women [6,7,8,9]. Even when policies mentioned the disproportionate burden of OA on diverse persons, details were limited; for example: “while both men and women get arthritis, two thirds of those affected in Canada are women” [40] refers to the higher prevalence of OA among women but does not elaborate on which types of women, acknowledge disparities in access to care, or how to tailor care for diverse women.
Nine (64.2%) policies mentioned that intersectional factors contribute to barriers in accessing OA care: lower socioeconomic status (7, 50%), geography, referring to persons living in rural or remote areas (6, 42.8%); older age (5, 35.7%); gender, referring to women (3, 21.4%); and ethno-cultural group (3, 21.4%). Policies provided limited detail about inequitable access to OA care for these diverse groups; for example: “Patient factors such as age, sex, obesity, comorbidities, etc. should not be barriers to referral for joint surgery” [33,34,35].
Strategies to improve access
Additional File S5 includes data on strategies recommended in included policies to improve access to OA care, and Table 4 provides a summary. Only 4 (28.6%) policies recommended one or more strategies needed to improve access to OA care. Three of those policies mentioned patient-level strategies: translate self-management educational material into various languages [33,34,35, 42] and ensure content is culturally-relevant [33,34,35, 39]. One policy included a clinician-level strategy: incorporate arthritis-related curriculum in the curriculum for training healthcare professionals [40]. Two policies identified 3 system-level strategies: formally assess the equity of OA programs or services in healthcare organizations [33,34,35], engage lay health leaders representing equity-seeking communities to deliver self-management programs [33,34,35, 39] and enhance the accessibility of self-management programs via telephone and online support [39].
Recommended research
Table 5 summarizes research recommendations extracted from 12 (85.7%) included policies. We did not initially intend to extract such data, but content analysis revealed research recommendations, which may be important to address gaps in policies identified by this study. Only 5 (35.7%) policies included research recommendations that explicitly acknowledged equity-seeking groups [30, 32, 40, 41, 45]: Increase investment in all aspects of OA research [40, 43]; Establish priorities for research that improves OA prevention and care [41]; Explore unique OA risks and OA care needs of various equity-seeking groups [30, 32, 40, 41]; Investigate how to support self-management among various equity-seeking groups [30, 32, 45]; Evaluate access to and impact of existing OA management programs to identify factors that contribute to beneficial outcomes [31, 33,34,35,36,37, 42,43,44]; Identify supports needed by healthcare professionals to foster patient self-management [39]; and Engage persons with OA in research [40].
Discussion
We analyzed the content of 14 national or provincial Canadian policies issued between 2004 and 2021 by government, knowledge translation, charitable, academic, patient advocacy and multi-sector organizations relevant to OA (n = 4) or to arthritis in general including OA (n = 10). No policies comprehensively addressed all PCC domains, and few or no policies addressed any of the six domains. Even when mentioned, content was brief, offering little guidance for what should be done to achieve person-centred OA care. Few policies acknowledged greater prevalence of OA among women, older persons, Indigenous persons and those of lower socioeconomic status; or barriers to OA care experienced by those of lower socioeconomic status, in rural or remote areas, of older age, of ethno-cultural groups or women. Only 4 (28.6%) policies recommended strategies needed to improve access to OA care.
Other research also identified a lack of OA-relevant policies in other countries, and limited guidance in those policies for health system reform need to improve access to and quality of OA care. An analysis of government policy and review of published research revealed that a national policy for OA care was established along with evidence-based clinical guidelines following designation of OA as a national health priority in Australia in 2002 but identified only two examples of how the policy or related guidelines influenced service delivery [46]. The authors concluded that, despite clinical guidelines, healthcare professionals are poorly supported by service models to optimize OA care. More recently, a 2023study that compared national policies on musculoskeletal health, including 41 policies that most commonly addressed pain, occupational health, inflammatory conditions and OA, and derived a framework of 47 principles to guide OA policy organized in 8 domains: service delivery, workforce, medicines and technologies, financing; data and information systems, leadership and governance; citizens, consumers and communities; and research and innovation [47]. However, neither of these studies specifically focused on equitable access to person-centred OA care, so our study is unique in this regard. Apart from these two studies of OA-relevant policy, system-level OA research is sparse, as other research has largely focused on the effectiveness of interventions used to promote the uptake of OA clinical guideline recommendations by clinicians [48, 49]. In this study, few policies acknowledged greater prevalence and severity of OA among women, or socio-gendered barriers of access to OA care among diverse women with OA. This finding is similar to our prior analysis of policies relevant to depression and cardiac rehabilitation, conditions with known gendered inequities, which found that few policies acknowledged barriers to care experienced by women or included strategies to reduce those disparities [50].
Several implications emerge from these findings. In Canada, there is a need for national and provincial/territorial policies that recognize the importance of person-centred OA care and include concrete system-level strategies to ensure that all persons with OA access the care they need, particularly equity-seeking groups including women. Given a lack of such policies or related health system reforms in many high-income countries [46, 47], this need may be widespread. Policies could perhaps be improved by including strategies to enhance access to OA care that may be available in the considerable evidence on early diagnosis and management of OA collated in clinical guidelines [3, 4]. Furthermore, information to guide the consideration of PCC in OA policies can be drawn from existing general PCC frameworks [25, 26] and quality indicators of person-centred OA care generated by various groups [16,17,18]. Hence, efforts may be needed to examine why policies supporting access to early, person-centred OA care are not available. This study revealed some insight on strategies that could be promoted through policy to transform the way that OA care is organized and delivered so that it is accessible to all at the patient (e.g. self-management education material in different languages and tailored to cultural norms), clinician (e.g. healthcare professional education in OA) and system level (e.g. evaluate the equity of OA programs/services, engage lay health leaders in delivering self-management programs, and offer self-management programs in a variety of formats such as telephone and online). However, additional primary research is likely needed to identify additional multi-level strategies; for example, via interviews with diverse persons with OA, clinicians, and health system leaders and policy-makers.
Once such research is generated, it may be difficult to integrate it into policy. Numerous factors challenge the translation of research into policy including perceptions about research evidence, competing influences and practical constraints, requiring dedicated action to promote research findings to policy-makers [51]. A systematic review of 19 studies on how to promote evidence-informed policy-making revealed that tailored policy briefs, workshops, ongoing technical assistance, and sharing of digital instructional materials influenced public health policy [52]. The same review showed that influence on policy was more likely when supported by a series of actions that included establishing an imperative for practice change, building trust between stakeholders and developing a shared vision, describing change mechanisms, using effective communication strategies and providing resources to support policy development.
Although this study investigated whether OA-relevant policies considered any equity-seeking group, our primary interest is in reducing known disparities in OA care among diverse women who are disproportionately impacted by OA [2, 5,6,7,8,9,10,11]. This study found that few policies noted a higher prevalence of OA among women or that gender was a barrier to accessing OA care, and no policies included strategies specifically aimed at improving access to person-centred OA care for women. Some insight on approaches to reduce socio-gender inequities in OA care could be gleaned from our prior research involving interviews with women and clinicians [53,54,55], which formed the basis of national consensus on priorities to improve women’s healthcare experiences and health [56]. As recommended in a few included policies, ongoing research in the OA context must be undertaken to identify strategies that address the needs and preferences of diverse women as well as other equity-seeking groups. For example, a qualitative study was conducted to understand the lived experience of Aboriginal and Torres Strait Islander people with OA, knowledge essential to developing policies that guide culturally-safe care [57]. Another way to ensure that policies reflect the perspectives of equity-seeking groups is to engage them in policy development, as was done in Australia when developed a system-wide model of care for hip and knee osteoarthritis [58]; and in another study that generated consensus among women with OA and healthcare professionals on multi-level strategies need to improve equitable, person-centred OA care for diverse women [59].
This study featured several strengths. We used rigorous methods for content analysis [23, 24], multiple individuals independently conducted screening and data extraction to optimize reliability, and we employed an established PCC framework that encompasses OA-specific elements of PCC to organize and interpret results [16,17,18, 25]. The entire research team, including a 13-member advisory group of diverse women with OA, were engaged throughout to guide data collection and analysis, and reviewed the findings. Although we are interested in women’s health, we extracted data on any equity-seeking group mentioned in included policies to broaden study relevance. A few limitations should be mentioned. We included documents that others might not consider policy, but we purposefully defined policy broadly to cast a wide net and include as many documents as possible. The search strategy we employed may not have identified all relevant policies. All included policies were relevant to the Canadian context so findings may not be transferrable to other countries with different population health profiles or healthcare systems.
Conclusions
Canadian OA-relevant policies lack guidance to overcome disparities in access to person-centred OA care for equity-seeking groups including women. This study identified several ways to strengthen policies: explicitly acknowledge disparities in access to and quality of OA care for equity-seeking groups; include detailed guidance for person-centred OA care across all domains (foster a healing relationship, exchange information, respond to emotions, manage uncertainty, share decisions and enable self-management); and offer concrete multi-level (patient, healthcare professional, system) strategies to enhance or transform the way that OA care is organized and delivered to ensure that all persons with OA access the care they need. To do this, ongoing research must identify the needs and preferences of equity-seeking persons with OA, and evaluate the impact of various models of service delivery, knowledge needed to influence OA-relevant policy.
Data availability
All data generated or analysed during this study are included in this published article and its supplementary information files.
Abbreviations
- OA:
-
Osteoarthritis
- PCC:
-
Person-centred care
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Acknowledgements
The authors thank members of the Osteoarthritis Study Women Advisory Group (AM, AN, JC, JT, KC, LR, MH, MT, PP, SR, TM, VI, and ZL) and our collaborating organizations for their input and feedback: Canadian Arthritis Patient Alliance, Arthritis Consumer Experts, Canadian Rheumatology Association, Arthritis Health Professions Association, Bone and Joint Canada, Neighbourhood Pharmacy Association of Canada and the University Health Network Schroeder Arthritis Institute.
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This research was funded by the Arthritis Society (grant # 21–0000000145), who took no part in the design of the study and collection, analysis, and interpretation of data, and in writing the manuscript.
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ARG conceived the study, acquired funding, and supervised and independently reviewed all aspects of the work including planning, searching, screening, data extraction and analysis, and manuscript preparation. AA and MT assisted in coordinating the study; collecting, extracting and summarizing data; and drafting the manuscript. DM, CM, CMB, GSH, MB, AL and VA assisted in conceiving the study, planning data collection and analysis, interpreting results and drafting the manuscript. All authors read and approved the final manuscript. All authors agreed both to be personally accountable for the author’s own contributions and to ensure that questions related to the accuracy or integrity of any part of the work, even ones in which the author was not personally involved, are appropriately investigated, resolved and the resolution documented in the literature.
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We did not require ethical approval for this study because data (policies) were publicly available.
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Abbaticchio, A., Theodorlis, M., Marshall, D. et al. Policies in Canada fail to address disparities in access to person-centred osteoarthritis care: a content analysis. BMC Health Serv Res 24, 522 (2024). https://doi.org/10.1186/s12913-024-10966-5
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DOI: https://doi.org/10.1186/s12913-024-10966-5