Background/Purpose: Indigenous populations in Canada, Australia, New Zealand and the United States of America have a higher prevalence of arthritis conditions and experience worse outcomes. Research can play a pivotal role in identifying and addressing care gaps, and community engagement (CE) approaches are the most promising ways for achieving positive and sustainable impacts. This systematic review characterizes CE patterns in arthritis studies involving Indigenous populations from four countries.

Methods: We performed a secondary systematic review (MEDLINE, EMBASE, CINAHL and Indigenous-specific online indexes up to May 2016) that characterized the epidemiology, clinical outcomes, mortality and health services utilization for arthritis in Indigenous populations of the four countries (n=5,269 titles and abstracts). 159 studies met inclusion criteria for the relevant outcomes. Included studies were evaluated for their descriptions of CE at inception of research, data collection, and data usage (i.e. results interpretation and dissemination). Extraction was performed in duplicate using standardized criteria. Descriptions were subsequently mapped onto a CE spectrum adapted from the Beacon for Public Engagement, ranging from the lowest to highest level of engagement: inform, consult, involve, collaborate or empower. Any studies that reported CE above consultation were assigned with meaningful community engagement (MCE) at the respective stage of research.

Results: Of the 159 included studies, 127 were CAN/USA publications and 32 were AUS/NZ publications. Only 32% (n=51) of the 159 included studies reported any description of CE (n=43 CAN/USA, n=8 AUS/NZ). Few studies report CE activities at the inception of research (n=6, 12%), with consultation described in 3 studies and collaboration discussed in 3 studies. In comparison, 98% (n=50) of studies described CE at the data collection stage, which also had the highest frequency of MCE compared to other research stages (n=11 studies). Here, the majority of studies (n=30) reported community consultation, while 11 studies reported involvement or collaboration. Nine studies recruited community members to aid data collection. During data usage, ten studies (20%) described CE, including 4 studies where Indigenous communities were informed or consulted with, and 6 where Indigenous communities were involved or collaborated with. Regionally, the reporting of MCE was concentrated in CAN/USA, with MCE described in all stages of research, whereas publications from AUS/NZ only reported MCE at data collection.

Conclusion: The reporting of CE in Indigenous arthritis studies in the specified countries is limited in frequency, with few studies reaching the higher end of the CE spectrum (i.e. collaboration and empowerment). CE was most frequently reported during the data collection stage and is mostly described at the consultation level, which can be reached merely by obtaining informed consent. This reflects researchers’ adherence to ethical guidelines rather than a CE effort. Regional differences in CE reporting are likely explained by differences in research policies for Indigenous research. We call for CE guidelines specific to Indigenous rheumatology research.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/characterizing-indigenous-community-engagement-patterns-in-published-arthritis-studies-a-systematic-review-of-the-literature/