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

Objective Community 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.Design Integrative 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 selection Studies 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.Analysis Recommendations for community engagement approaches were extracted and thematically synthesised through content analysis.Results A 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.Conclusions We 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

The Application of Preference Elicitation Methods in Clinical Trial Design to Quantify Trade-Offs: A Scoping Review

Background and Objective: Patients can express preferences for different treatment options in a healthcare context, which can be measured with quantitative preference elicitation methods. Our objective was to conduct a scoping review to determine how preference elicitation methods have been used to design clinical trials. Methods: We conducted a scoping review to identify primary research studies involving any health condition, that used quantitative preference elicitation methods, including direct utility-based approaches, and stated preference studies, to value heath trade-offs in the context of clinical trial design. Studies were identified by screening existing systematic and scoping reviews, and a primary literature search in MEDLINE from 2010-present. We extracted study characteristics and the application of preference elicitation methods to clinical trial design according to the SPIRIT checklist from primary studies and summarized the findings descriptively. Results: We identified 18 eligible studies. The included studies applied patient preferences to 5 areas of clinical trial design: intervention selection (n=1), designing N-of-1 trials (n=1), outcome selection and weighting composite and ordinal outcomes (n=12), sample size calculations (n=2), and recruitment (n=2). Using preference elicitation methods led to different decisions being made, such as using preference-weighted composite outcomes instead of equally weighted composite outcomes. Conclusion: Preference elicitation methods are infrequently used to design clinical trials but may lead to changes throughout the trial which could impact the evidence generated. Future work should be done to consider measurement challenges and explore stakeholder perceptions.Canadian Institutes of Health Research (CIHR

The impact of arthritis on the physical function of a rural Maya-Yucateco community and factors associated with its prevalence: a cross sectional, community-based study

This study aims to evaluate the impact of arthritis on the physical function of people living in a Maya-Yucateco rural community and to assess the association of known modifiable risk factors with the prevalence of overall arthritis and its main types (osteoarthritis and rheumatoid arthritis). Using a cross-sectional, community-based census design, data collected from the adult population (≥18 years) of the Municipality of Chankom, Yucatán, México, were analyzed (n = 1523). Participants’ physical function was assessed using a culturized version of the health assessment questionnaire disability index. Social, physical, and behavioral factors linked to overall arthritis, osteoarthritis, and rheumatoid arthritis, were assessed through the “Community-Oriented-Program-for-the-Control-of-Rheumatic-Diseases [COPCORD]” questionnaire. A physiatrist and a rheumatologist confirmed all osteoarthritis and rheumatoid arthritis cases using the American College of Rheumatology criteria. Arthritis was confirmed in 169 cases (22 %, 95 % confidence interval (CI) 19–25) of those assessed for musculoskeletal symptoms (n = 779): osteoarthritis = 144, rheumatoid arthritis = 17, and non-specific arthritis = 8. Arthritis was associated with a higher prevalence of disability after controlling for age, gender, and number of comorbidities (odds ratio = 4.0, 95 % CI 3.0–6.0). Higher level of wealth was associated with lower arthritis prevalence (odds ratio = 0.9, 95% CI 0.8–0.9). Higher body mass index was associated with higher hip and/or knee osteoarthritis prevalence (odds ratio = 1.1, 95 % CI 1.03–1.1). Arthritis is highly associated with disability in the Mayan people living in Chankom. The prevalence of arthritis in Chankom is associated with social factors, such as people’s level of wealth, while the prevalence of low-extremity osteoarthritis is associated with people’s body mass index

Physical Function Assessment of a Mayan Population Living With Osteoarthritis: The Importance of Considering Different Aspects of Functioning

Objectives: To assess the physical function of people living with osteoarthritis in a Maya-Yucateco rural community from 3 perspectives and explore factors associated with the presence of disability. Design: Physical function and social, physical, psychological, and behavioral factors were evaluated in all adults detected with hand, hip, and/or knee osteoarthritis (n = 144) through a Community-Oriented Program for the Control of Rheumatic Diseases–based census in the Mayan community of Chankom, Yucatán. All cases fulfilled the American College of Rheumatology criteria. Physical function was assessed from 3 perspectives: hypothetical or “what people think they can do” (Health Assessment Questionnaire-Disability Index [HAQ-DI]), experimental or “what people could do in standardized conditions” (6-minute walk test [6MWT] + the Functional Dexterity Test) and enacted or “what people actually do” (personal care, work, and leisure activities’ self-report). Results: About 80% of participants reported “mild” disability (HAQ-DI ≤ 1) in the hypothetical function perspective, whereas average experimental function scores were low (6MWT: 206 m, Functional Dexterity Test: 64 seconds), and 78% of participants reported problems with enacted function (ie, work). Pain was significantly associated with disability in the hypothetical perspective (odds ratio [OR] = 3 [95% confidence interval [CI]: 1-4]); levels of wealth (β = 5 [95% CI: 1-9]) and muscle strength (β = 54 [95% CI: 20-87]) were significantly associated with functioning in the experimental perspective; and lower levels of self-efficacy (OR = 12 [95% CI: 6-27]) and physical activity (OR = 12 [95% CI: 6-27]) were significantly associated with work disability in the enacted function perspective. Conclusions: People living with osteoarthritis in Chankom show important issues when assessing physical function at the experimental and enacted perspectives, which could have been overlooked if only the hypothetical perspective was considered. Different factors were associated with different physical function perspectives and all should be addressed to decrease disability in this community

“There are still a lot of things that I need”: a qualitative study exploring opportunities to improve the health services of First Nations People with arthritis seen at an on-reserve outreach rheumatology clinic

Background: Arthritis is a highly prevalent disease and leading cause of disability in the Indigenous population. A novel model of care consisting of a rheumatology outreach clinic in an on-reserve primary healthcare center has provided service to an Indigenous community in Southern Alberta since 2010. Despite quality assessments suggesting this model of care improves accessibility and is effective in meeting treatment targets, substantial improvements in patient-reported outcomes have not been realized. Therefore, the objective of this study was to explore the experiences of Indigenous persons with arthritis and healthcare providers involved in this model of care to inform the development of health service improvements that enhance patient outcomes. Methods: This was a narrative-based qualitative study involving a purposeful sample of 32 individuals involved in the Indigenous rheumatology model of care. In-depth interviews were conducted to elicit experiences with the existing model of care and to encourage reflections on opportunities to improve it. A two-stage analysis was conducted. The first stage aimed to produce a narrative synthesis of concepts through a dialogical method comparing people with arthritis and health providers’ narratives. The second stage involved a collective effort to synthesize concepts and propose specific recommendations to improve the quality of the current model of care. Triangulation, through participant checking and discussion among researchers, was used to increase the validity of the final recommendations. Results: Ten Indigenous people with arthritis lived experience, 14 health providers and 8 administrative staff were interviewed. One main overarching theme was identified, which reflected the need to provide services that improve people’s physical and mental functioning. Further, the following specific recommendations were identified: 1) enhancing patient-provider communication, 2) improving the continuity of the healthcare service, 3) increasing community awareness about the presence and negative impact of arthritis, and 4) increasing peer connections and support among people living with arthritis. Conclusions: Improving the quality of the current Indigenous rheumatology model of care requires implementing strategies that improve functioning, patient-provider communication, continuity of care, community awareness and peer support. A community-based provider who supports people while navigating health services could facilitate the implementation of these strategies.Medicine, Faculty ofNon UBCMedicine, Department ofRheumatology, Division ofReviewedFacult

Evaluating Efficiency of a Provincial Telerehabilitation Service in Improving Access to Care During the COVID-19 Pandemic

Scope: Early in the COVID-19 pandemic, community rehabilitation stakeholders from a provincial health system designed a novel telerehabilitation service. The service provided wayfinding and self-management advice to individuals with musculoskeletal concerns, neurological conditions, or post-COVID-19 recovery needs. This study evaluated the efficiency of the service in improving access to care. Methodology: We used multiple methods including secondary data analyses of call metrics, narrative analyses of clinical notes using artificial intelligence (AI) and machine learning (ML), and qualitative interviews.                                                                        Conclusions: Interviews revealed that the telerehabilitation service had the potential to positively impact access to rehabilitation during the COVID-19 pandemic, for individuals living rurally, and for individuals on wait lists. Call metric analyses revealed that efficiency may be enhanced if call handling time was reduced. AI/ML analyses found that pain was the most frequently-mentioned keyword in clinical notes, suggesting an area for additional telerehabilitation resources to ensure efficiency

Patient and Rheumatologist Perspectives on Tapering DMARDs in Rheumatoid Arthritis: A Qualitative Study

Objectives: To understand the perspectives of patients and rheumatologists for tapering DMARDs in RA. Methods: Using semi-structured interview guides, we conducted individual interviews and focus groups with RA patients and rheumatologists, which were audiotaped and transcribed. We conducted a pragmatic thematic analysis to identify major themes, comparing and contrasting different views on DMARD tapering between patients and rheumatologists. Results: We recruited 28 adult patients with RA (64% women; disease duration 1-54 years) and 23 rheumatologists (52% women). Attitudes across both groups towards tapering DMARDs were ambivalent, ranging from wary to enthusiastic. Both groups expressed concerns, particularly the inability to ‘recapture’ the same level of disease control, while also acknowledging potential positive outcomes such as reduced drug harms. Patient tapering perspectives (whether to and when) changed over time and commonly included non-biologic DMARDs. Patient preferences were influenced by lived experiences, side effects, previous tapering experiences, disease trajectory, remission duration, and current life roles. Rheumatologists’ perspectives varied on timing and patient profile to initiate tapering, and were informed by both data and clinical experience. Patients expressed interest in shared decision making (SDM) and close monitoring during tapering, with ready access to their healthcare team if problems arose. Rheumatologists were generally open to tapering (not stopping), though sometimes only when requested by their patients. Conclusion: The perspectives of patients and rheumatologists on tapering DMARDs in RA vary and evolve over time. Rheumatologists should periodically discuss DMARD tapering with patients as part of SDM, and ensure monitoring and flare management plans are in place.Canadian Institutes of Health Research (CIHR

Exploring perceptions of using preference elicitation methods to inform clinical trial design in rheumatology:a qualitative study and OMERACT collaboration

BACKGROUND: Clinical trial design requires value judgements and understanding patient preferences may help inform these judgements, for example when prioritizing treatment candidates, designing complex interventions, selecting appropriate outcomes, determining clinically important thresholds, or weighting composite outcomes. Preference elicitation methods are quantitative approaches that can estimate patients' preferences to quantify the absolute or relative importance of outcomes or other attributes relevant to the decision context. We aimed to explore stakeholder perceptions of using preference elicitation methods to inform judgements when designing clinical trials in rheumatology. METHODS: We conducted 1-on-1 semi-structured interviews with patients with rheumatic diseases and rheumatology clinicians/researchers, recruited using purposive and snowball sampling. Participants were provided pre-interview materials, including a video and a document, to introduce the topic of preference elicitation methods and case examples of potential applications to clinical trials. Interviews were conducted via Zoom and were audio-recorded and transcribed. We used thematic analysis to analyze our data. RESULTS: We interviewed 17 patients and 9 clinicians/researchers, until data and inductive thematic saturation were achieved within each group. Themes were grouped into overall perceptions, barriers, and facilitators. Patients and clinicians/researchers generally agreed that preference elicitation studies can improve clinical trial design, but that many considerations are required around preference heterogeneity and feasibility. A key barrier identified was the additional resources and expertise required to measure and incorporate preferences effectively in trial design. Key facilitators included developing guidance on how to use preference elicitation to inform trial design, as well as the role of external decision-makers in developing such guidance, and the need to leverage the movement towards patient engagement in research to encourage including patient preferences when designing trials. CONCLUSION: Our findings allowed us to consider the potential applications of patient preferences in trial design according to stakeholders within rheumatology who are involved in the trial process. Future research should be conducted to develop comprehensive guidance on how to meaningfully include patient preferences when designing clinical trials in rheumatology. Doing so may have important downstream effects for shared decision-making, especially given the chronic nature of rheumatic diseases