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Data Management in Health-Related Research Involving Indigenous Communities in the United States and Canada: A Scoping Review.

ABSTRACT: Background: Multiple factors, including experiences with unethical research practices, have made some Indigenous groups in the United States and Canada reticent to participate in potentially beneficial health-related research. Yet, Indigenous peoples have also expressed a willingness to participate in research when certain conditions related to the components of data management-including data collection, analysis, security and storage, sharing, dissemination, and withdrawal-are met. A scoping review was conducted to better understand the terms of data management employed in health-related research involving Indigenous communities in the United States and Canada. Methods: PubMed, Embase, PsychINFO, and Web of Science were searched using terms related to the populations and topics of interest. Results were screened and articles deemed eligible for inclusion were extracted for content on data management, community engagement, and community-level research governance. Results: The search strategy returned 734 articles. 31 total articles were extracted, of which nine contained in-depth information on data management and underwent detailed extraction. All nine articles reported the development and implementation of data management tools, including research ethics codes, data-sharing agreements, and biobank access policies. These articles reported that communities were involved in activities and decisions related to data collection (n=7), data analysis (n=5), data-sharing (n=9), dissemination (n=7), withdrawal (n=4), and development of data management tools (n=9). The articles also reported that communities had full or shared ownership of (n=5), control over (n=9), access to (n=1), and possession of data (n=5). All nine articles discussed the role of community engagement in research and community-level research governance as means for aligning the terms of data management with the values, needs, and interests of communities. Conclusions: There is need for more research and improved reporting on data management in health-related research involving Indigenous peoples in the United States and Canada. Findings from this review can provide guidance for the identification of data management terms and practices that may be acceptable to Indigenous communities considering participation in health-related research.

SUBMITTER: Woodbury RB

PROVIDER: S-EPMC6796238 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

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Project description:BackgroundMobile clinics have been used to deliver primary health care to populations that otherwise experience difficulty in accessing services. Indigenous populations in Australia, Canada, New Zealand, and the United States experience greater health inequities than non-Indigenous populations. There is increasing support for Indigenous-governed and culturally accessible primary health care services which meet the needs of Indigenous populations. There is some support for primary health care mobile clinics implemented specifically for Indigenous populations to improve health service accessibility. The purpose of this review is to scope the literature for evidence of mobile primary health care clinics implemented specifically for Indigenous populations in Australia, Canada, New Zealand, and the United States.MethodsThis review was undertaken using the Joanna Brigg Institute (JBI) scoping review methodology. Review objectives, inclusion criteria and methods were specified in advance and documented in a published protocol. The search included five academic databases and an extensive search of the grey literature.ResultsThe search resulted in 1350 unique citations, with 91 of these citations retrieved from the grey literature and targeted organisational websites. Title, abstract and full-text screening was conducted independently by two reviewers, with 123 citations undergoing full text review. Of these, 39 citations discussing 25 mobile clinics, met the inclusion criteria. An additional 14 citations were snowballed from a review of the reference lists of included citations. Of these 25 mobile clinics, the majority were implemented in Australia (n = 14), followed by United States (n = 6) and Canada (n = 5). No primary health mobile clinics specifically for Indigenous people in New Zealand were retrieved. There was a pattern of declining locations serviced by mobile clinics with an increasing population. Furthermore, only 13 mobile clinics had some form of evaluation.ConclusionsThis review identifies geographical gaps in the implementation of primary health care mobile clinics for Indigenous populations in Australia, Canada, New Zealand, and the United States. There is a paucity of evaluations supporting the use of mobile clinics for Indigenous populations and a need for organisations implementing mobile clinics specifically for Indigenous populations to share their experiences. Engaging with the perspectives of Indigenous people accessing mobile clinic services is imperative to future evaluations.RegistrationThe protocol for this review has been peer-reviewed and published in JBI Evidence Synthesis (doi: 10.11124/JBISRIR-D-19-00057).

Project description:BACKGROUND:Barriers to receiving optimal healthcare exist for Indigenous populations globally for a range of reasons. To overcome such barriers and enable greater access to basic and specialist care, developments in information and communication technologies are being applied. The focus of this scoping review is on web-based therapeutic interventions (WBTI) that aim to provide guidance, support and treatment for health problems. OBJECTIVES:This review identifies and describes international scientific evidence on WBTI used by Indigenous peoples in Australia, New Zealand, Canada and USA for managing and treating a broad range of health conditions. ELIGIBILITY CRITERIA:Studies assessing WBTI designed for Indigenous peoples in Australia, Canada, USA and New Zealand, that were published in English, in peer-reviewed literature, from 2006 to 2018 (inclusive), were considered for inclusion in the review. Studies were considered if more than 50% of participants were Indigenous, or if results were reported separately for Indigenous participants. SOURCES OF EVIDENCE:Following a four-step search strategy in consultation with a research librarian, 12 databases were searched with a view to finding both published and unpublished studies. CHARTING METHODS:Data was extracted, synthesised and reported under four main conceptual categories: (1) types of WBTI used, (2) community uptake of WBTI, (3) factors that impact on uptake and (4) conclusions and recommendations for practice. RESULTS:A total of 31 studies met the inclusion criteria. The WBTI used were interactive websites, screening and assessment tools, management and monitoring tools, gamified avatar-based psychological therapy and decision support tools. Other sources reported the use of mobile apps, multimedia messaging or a mixture of intervention tools. Most sources reported moderate uptake and improved health outcomes for Indigenous people. Suggestions to improve uptake included as follows: tailoring content and presentation formats to be culturally relevant and appropriate, customisable and easy to use. CONCLUSIONS:Culturally appropriate, evidence-based WBTI have the potential to improve health, overcome treatment barriers and reduce inequalities for Indigenous communities. Access to WBTI, alongside appropriate training, allows health care workers to better support their Indigenous clients. Developing WBTI in partnership with Indigenous communities ensures that these interventions are accepted and promoted by the communities.

Project description:BackgroundThere is a complicated and exploitative history of research with Indigenous peoples and accompanying calls to meaningfully and respectfully include Indigenous knowledge in healthcare. Storytelling approaches that privilege Indigenous voices can be a useful tool to break the hold that Western worldviews have within the research. Our collaborative team of Indigenous and non-Indigenous researchers, and Indigenous patients, Elders, healthcare providers, and administrators, will conduct a critical participatory, scoping review to identify and examine how storytelling has been used as a method in Indigenous health research.MethodsGuided by two-eyed seeing, we will use Bassett and McGibbon's adaption of Arksey and O'Malley's scoping review methodology. Relevant articles will be identified through a systematic search of the gray literature, core Indigenous health journals, and online databases including Scopus, MEDLINE, Embase, CINAHL, AgeLine, Academic Search Complete, Bibliography of Native North Americans, Canadian Reference Centre, and PsycINFO. Qualitative and mixed-methods research articles will be included if the researchers involved Indigenous participants or their healthcare professionals living in Turtle Island (i.e., Canada and the USA), Australia, or Aotearoa (New Zealand); use storytelling as a research method; focus on healthcare phenomena; and are written in English. Two reviewers will independently screen titles/abstracts and full-text articles. We will extract data, identify the array of storytelling approaches, and critically examine how storytelling was valued and used. An intensive collaboration will be woven throughout all review stages as academic researchers co-create this work with Indigenous patients, Elders, healthcare professionals, and administrators. Participatory strategies will include four relational gatherings throughout the project. Based on our findings, we will co-create a framework to guide the respectful use of storytelling as a method in Indigenous health research involving Indigenous and non-Indigenous peoples.DiscussionThis work will enable us to elucidate the extent, range, and nature of storytelling within Indigenous health research, to critically reflect on how it has been and could be used, and to develop guidance for the respectful use of this method within research that involves Indigenous peoples and settlers. Our findings will enable the advancement of storytelling methods which meaningfully include Indigenous perspectives, practices, and priorities to benefit the health and wellbeing of Indigenous communities.Systematic review protocol registrationOpen Science Framework ( https://osf.io/rvf7q ).

Project description:IntroductionParticipatory research involving community engagement is considered the gold standard in Indigenous health research. However, it is sometimes unclear whether and how Indigenous communities are engaged in research that impacts them, and whether and how engagement is reported. Indigenous health research varies in its degree of community engagement from minimal involvement to being community-directed and led. Research led and directed by Indigenous communities can support reconciliation and reclamation in Canada and globally, however clearer reporting and understandings of community-led research is needed. This scoping review assesses (a) how and to what extent researchers are reporting community engagement in Indigenous health research in Atlantic Canada, and (b) what recommendations exist in the literature regarding participatory and community-led research.MethodsEleven databases were searched using keywords for Indigeneity, geographic regions, health, and Indigenous communities in Atlantic Canada between 2001-June 2020. Records were independently screened by two reviewers and were included if they were: peer-reviewed; written in English; health-related; and focused on Atlantic Canada. Data were extracted using a piloted data charting form, and a descriptive and thematic analysis was performed. 211 articles were retained for inclusion.ResultsFew empirical articles reported community engagement in all aspects of the research process. Most described incorporating community engagement at the project's onset and/or during data collection; only a few articles explicitly identified as entirely community-directed or led. Results revealed a gap in reported capacity-building for both Indigenous communities and researchers, necessary for holistic community engagement. Also revealed was the need for funding bodies, ethics boards, and peer review processes to better facilitate participatory and community-led Indigenous health research.ConclusionAs Indigenous communities continue reclaiming sovereignty over identities and territories, participatory research must involve substantive, agreed-upon involvement of Indigenous communities, with community-directed and led research as the ultimate goal.

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Data Management in Health-Related Research Involving Indigenous Communities in the United States and Canada: A Scoping Review.

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