Characterization of indigenous community engagement in arthritis studies conducted in Canada, United States of America, Australia and New Zealand

Lin, Chu Yang; Loyola‐Sánchez, Adalberto; Hurd, Kelle; Ferucci, Elizabeth D.; Crane, Louise; Healy, Bonnie; Barnabe, Cheryl

doi:10.1016/j.semarthrit.2018.11.009

Cited by 12 publications

(9 citation statements)

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“…Open access USA, Canada, Australia and New Zealand produced by our research group found that the majority of research processes continue to nominally involve Indigenous peoples at meaningful levels, 9 leading to minimal benefit for the participants and communities involved. One way to move forward is to engage in meaningful collaborations with communities 1 throughout the research process, including stages of identifying and addressing relevant health concerns, to data collection, interpretation of results and utilisation of results together with those that are impacted by it.…”

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confidence: 99%

Community engagement approaches for Indigenous health research: recommendations based on an integrative review

et al. 2020

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ObjectiveCommunity engagement practices in Indigenous health research are promoted as a means of decolonising research, but there is no comprehensive synthesis of approaches in the literature. Our aim was to assemble and qualitatively synthesise a comprehensive list of actionable recommendations to enhance community engagement practices with Indigenous peoples in Canada, the USA, Australia and New Zealand.DesignIntegrative review of the literature in medical (Medline, Cumulative Index to Nursing and Allied Health Literature and Embase) and Google and WHO databases (search cut-off date 21 July 2020).Article selectionStudies that contained details regarding Indigenous community engagement frameworks, principles or practices in the field of health were included, with exclusion of non-English publications. Two reviewers independently screened the articles in duplicate and reviewed full-text articles.AnalysisRecommendations for community engagement approaches were extracted and thematically synthesised through content analysis.ResultsA total of 63 studies were included in the review, with 1345 individual recommendations extracted. These were synthesised into a list of 37 recommendations for community engagement approaches in Indigenous health research, categorised by stage of research. In addition, activities applicable to all phases of research were identified: partnership and trust building and active reflection.ConclusionsWe provide a comprehensive list of recommendations for Indigenous community engagement approaches in health research. A limitation of this review is that it may not address all aspects applicable to specific Indigenous community settings and contexts. We encourage anyone who does research with Indigenous communities to reflect on their practices, encouraging changes in research processes that are strengths based.

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Community engagement approaches for Indigenous health research: recommendations based on an integrative review

et al. 2020

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“…Our environmental scan provides examples of delayed intervention, and these approaches often coincide with cultural values of inclusion, which is essential for Indigenous community engagement. 36 Although community engagement is often more reported in the North American literature due to differences in research funding policies and legislative framework differences regarding government–Indigenous community relations, 37 this study showed that some level of community involvement that involved engaging Indigenous communities in the research processes was reported across all four countries. Prioritizing community engagement and education, 38 and utilizing engaging strategies to recruit Indigenous peoples in clinical trials can assist in reducing barriers to enrollment.…”

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confidence: 57%

The representation of Indigenous peoples in chronic disease clinical trials in Australia, Canada, New Zealand, and the United States

2022

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Background Indigenous peoples are overrepresented with chronic health conditions and experience suboptimal outcomes compared with non-Indigenous peoples. Genetic variations influence therapeutic responses, thus there are potential risks and harm when extrapolating evidence from the general population to Indigenous peoples. Indigenous population–specific clinical studies, and inclusion of Indigenous peoples in general population clinical trials, are perceived to be rare. Our study (1) identified and characterized Indigenous population–specific chronic disease trials and (2) identified the representation of Indigenous peoples in general population chronic disease trials conducted in Australia, Canada, New Zealand, and the United States. Methods For Objective 1, publicly available clinical trial registries were searched from May 2010 to May 2020 using Indigenous population–specific terms and included for data extraction if in pre-specified chronic disease. For identified trials, we extracted Indigenous population group identity and characteristics, type of intervention, and funding type. For Objective 2, a random selection of 10% of registered clinical trials was performed and the proportion of Indigenous population participants enrolled extracted. Results In total, 170 Indigenous population–specific chronic disease trials were identified. The clinical trials were predominantly behavioral interventions (n = 95). Among general population studies, 830 studies were randomly selected. When race was reported in studies (n = 526), Indigenous individuals were enrolled in 172 studies and constituted 5.6% of the total population enrolled in those studies. Conclusion Clinical trials addressing chronic disease conditions in Indigenous populations are limited. It is crucial to ensure adequate representation of Indigenous peoples in clinical trials to ensure trial data are applicable to their clinical care.

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“…When they are appropriately selected, trained, and supervised, the community health workers can be effective in improving population health and the access to healthcare system for minority groups. Loyola-Sanchez et al [20] describe, in a qualitative study with indigenous individuals, a rheumatology model of care that improves the patient-provider communication, which is one of the pillars for a better quality of care. Another role of the community health workers in this community should be to become a bridge between traditional medicine and biomedicine, with the implementation of the concept of intercultural health.…”

Section: Discussionmentioning

confidence: 99%

Access to healthcare system of indigenous communities with musculoskeletal disorders and rheumatic disease in Chaco, Argentina: a qualitative study

et al. 2020

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Introduction/objectives The objective of this study is to describe the local healthcare system from the perspective of the health professionals, community health workers, and local representatives of the qom community living in the province of Chaco, Argentina. Methods A qualitative study, with an ethnographic approach, was carried out using two techniques: non-participant observations and semi-structured interviews. A guide for the interviews was designed and developed by a multidisciplinary group of GLADERPO researchers. The main aspects included were the following: reference into the local healthcare system and accessibility to the system. Andersen's base conceptual model of health service utilization was applied for the analysis and for structuring the results. Results A total of 21 people were interviewed, twelve women and nine men with an age ranging between 25 and 60 years old. The main findings were different barriers (communication and cultural) between the community and the healthcare system; "navigation" within the health system carried out by the qom community; and migration and bureaucratization of the health system. Conclusions These findings should be incorporated into educational strategies to improve access to healthcare system and adherence to medical treatment, establishing an interaction between the different levels of the local care system and providing community health workers with an appropriate training with the support of the community representatives. Key Points • The different barriers between the community and the healthcare system were described. • The "navigation" within the health system carried out by the qom community and the migration were relevant points. • The bureaucratization of the health system and the need to design and implement educational strategies in the future were highlighted.

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Characterization of indigenous community engagement in arthritis studies conducted in Canada, United States of America, Australia and New Zealand

Cited by 12 publications

References 138 publications

Community engagement approaches for Indigenous health research: recommendations based on an integrative review

Community engagement approaches for Indigenous health research: recommendations based on an integrative review

The representation of Indigenous peoples in chronic disease clinical trials in Australia, Canada, New Zealand, and the United States

Access to healthcare system of indigenous communities with musculoskeletal disorders and rheumatic disease in Chaco, Argentina: a qualitative study

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