Community Engagement Approaches for Indigenous Health Research: an Integrative Review

Community engagement practices in Indigenous Health research are promoted as a means of decolonizing research, but there is no comprehensive synthesis of approaches in the literature. Our aim was to assemble and qualitatively synthesize a comprehensive list of actionable recommendations to enhance community engagement practices with Indigenous Peoples. We performed an integrative review of literature in medical (Medline, CINAHL and Embase), as well as Google and World Health Organization databases (search cutoff date November 17, 2018). 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. Recommendations for community engagement approaches were extracted and thematically synthesized through content analysis. A total of 52 studies were included in the review, with 1268 individual recommendations extracted. These were synthesized into a list of 37 recommendations for community engagement approaches in Indigenous health research, categorized 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 upon their practices, encouraging changes in research processes that are strengths-based.

Background
Research involving Indigenous communities has been linked to research fatigue, 1 the misuse of genetic samples from Indigenous peoples, 2 and an approach that is rooted in community deficits rather than strengths. 3 Perhaps it is for these reasons that many communities have developed a fear of the term 'research', 4 and have viewed this process as an extension of colonialism. 5 Reports in health research frequently characterize disparities in outcomes between Indigenous and non-Indigenous people and offer an explanation that is rooted in socioeconomic differences. 6 Less frequent is the consideration that these so-called disparities are attributed to forced attempts of assimilation and removal of Indigenous language, culture and knowledge from the  6 Despite these measures, a recent systematic review surveying patterns of community engagement in arthritis studies in the United States, 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 utilization of results together with those that are impacted by it. This represents an entry point to 'decolonizing methodologies', 10 which requires a shift of typical power from the researcher to the community, and prioritizing community needs rather than researcher interests. In our experiences in facilitating Indigenous Health research in our local environment, we have observed that there is interest from researchers to learn how to enact these principles, yet with a general uncertainty on how to do so. It is likely that this is linked to the paucity of comprehensive recommendations for community engagement approaches with Indigenous Peoples in the existing literature, and an inconsistent reporting requirement for community engagement practices among journal publishers.
The purpose of this integrative review was to produce a comprehensive list of recommendations for the engagement of Indigenous communities in health research, through a systematic search of the literature and subsequent qualitative synthesis. This would support paradigm-shifting research practices that value community input while minimizing risks of unintended harms and consequences for Indigenous communities.

Identification of Existing Literature
We utilized an "integrative review" methodology, a well-established method to systematically review and produce qualitative syntheses from the existing literature. 11

Study Selection
The titles and abstracts of retrieved studies were screened in duplicate by two members of our research team (CYL and ALS) following specific inclusion and exclusion criteria (Table 2). These same two researchers independently conducted a full-text review of the manuscripts that fulfilled our inclusion criteria.

Data Collection Process
Full-text manuscripts meeting the inclusion criteria and not excluded were reviewed and general information on the study was extracted, including author, year of publication, journal, Indigenous co-authorship or endorsement, methodology, Indigenous population involved, country of origin, name of guideline or framework, and health area. We then extracted statements about strategies and recommendations for community engagement, only if they were actionable, implying that purely theoretical statements were not

Role of the Funding Source
The funder of the study had no role in study design, data collection, data analysis, data interpretation, or writing of the report. The corresponding author had full access to all the data in the study and had final responsibility for the decision to submit for publication.

Study Selection
Two-hundred and ninety-five manuscripts were screened for title and abstract relevancy and 181 were removed as they did not fulfill the inclusion criteria. One-hundred and fourteen full-texts were further reviewed and 62 were removed as they fulfilled the exclusion criteria. A total of 52 studies were included in the qualitative synthesis ( Figure   1).

Process of Qualitative Synthesis of the Recommendations
From the fifty-two included studies, 12-63 a total of 1268 actionable community engagement recommendations were extracted, an average of twenty-four statements per manuscript. Study characteristics are found in Table 3. Following the first thematic analysis, the 1268 recommendations were synthesized into 213 recommendations. The final synthesis step resulted in 37 main recommendations, categorized by the research stage and topic related to community engagement, summarized below (Table 4). leadership. These relationships should be entered with a longitudinal commitment, and with the intention of being an ally rather than with a 'saviour' ethos. Individual nations will have protocols and expectations for beginning and establishing the relationship, and expertise from others should be sought. If there is acceptance of the researcher by the community and its leadership, then discussions to learn about community needs is prioritized, rather than the researcher determining the topic or a preset research agenda.

Recommendations by Stage of Research
Formal approval processes to proceed with research will be determined by the community.
The researcher may then proceed with broader community engagement, and formalization of the research team. 'Dissemination and Utilization of Results': Here, a fundamental guiding principle that empowers Indigenous communities is that they hold the final voice to approve research results in any form before they are disseminated and used. We stress the importance of having clear and transparent processes to communicate the research results to communities, under an ethics framework of community ownership.

Approach to Community Engagement and List of Recommendations
Two over-arching themes for community engagement with Indigenous Peoples were identified, which include recommendations that are pertinent to enact at all stages of a research project: "partnership and trust" and "active reflection" (Figure 2). Every stage of a research project includes the potential to increase Indigenous communities' capacity to address their health issues, strengthen the relationships between community and researchers, and to equilibrate power and knowledge between these two parts.
Consequently, it is recommended under the theme of "Partnership and trust" to always aim to build partnerships with community members aiming for mutual benefit and trust, based on principles of Indigenous autonomy, community participation, capacity building, respect, reciprocity, responsibility, advocacy and power redistribution during decision making. In addition, it is essential for researchers to engage in a continuous process of self -reflection throughout all research stages, in order to recognize individual preconceptions and worldviews, and transcend these to collaborate with community members to produce knowledge that can be shared and accepted by all. Therefore, under the theme of "active reflection" it is recommended that researchers actively reflect on their personal motivations and on power differentials between them and communities as a way to embrace learning and move forward with true collaborative actions.

Discussion
These recommendations synthesize and promote actionable recommendations for community engagement approaches with Indigenous Peoples when engaging in health research. While detailing practices throughout the different stages of the research process, two over-arching concepts were identified: the critical components of building partnership and trust, and pursing active reflection of one's interactions and approaches with community. Through the recommendations suggested in this work, we endeavor to provide direction to researchers in decolonizing methodologies-a much needed impetus for avoiding a 'researcher-knows-best' and 'deficit-based' approach to research involving any Indigenous community as has been occurring in the scientific community.
The process of community engagement begins far before data collection-it begins with preparation and learning on behalf of the researchers, and this sets the tone for subsequent stages of the research. Important questions to consider before initiating a research project in an Indigenous community are: a) Why is it that some communities oppose research?, and b) for what reasons did some communities distance themselves from research? Researchers can begin by understanding the history of the relationship between research and Indigenous communities, and the experiences of oppression and assimilation Indigenous communities have faced historically and continue to experience. 35 In addition to understanding the historical context, it is equally important to understand that the current health inequities are rooted in colonialism, 46 a legacy propagated to this day. It is crucial that researchers do not move ahead with a research idea until they obtain a solid understanding of historical implications of research and colonialism.
Following this preparatory step, researchers need to establish relationships and earn their trust in local communities. One way to create a path for creating new connections is through seeking introductions from individuals who already have an established connection with the community. 26 Nevertheless, it is important to recognize that it is the researcher's responsibility to invest significant amounts of time and energy in ongoing relationship-building. 22 It is worth to invest in relationships as these will enable meaningful dialogues that will help define what is important within the community's selfdetermined health agenda. 30 Only after determining community needs should the plan for research be considered and developed. In addition, formalizing Terms of Reference or Memorandums of Understanding between researchers and community are fundamental to ensure the researcher commitment to the community's benefit. 27 Details of the research plan need to reflect community strengths, 22 and must be realistic, feasible and transparent, especially relating to the costs 29 and timelines of the project. 26 Researchers must also delineate which data are to be collected and agree on the limits for data collection. One way to increase community capacity and increase data collection appropriateness is through hiring local community members. 44 Moreover, throughout the research process it is important to iteratively obtain feedback from communities, relating to data collection processes and research progress. 21 Any collected data should belong to the communities which they are derived from, 14 and any intellectual property rights generated from the research need to reflect this. 32 Community members need to be consulted for interpreting findings, through creating a safe space for knowledge exchange between Indigenous knowledge and researcher views.
No result should be deemed final unless approved by the community. Discussions for implications of the results should be also facilitated. 49 The dissemination and utilization of research results should reflect the objectives of the research project, that is, it should address the needs of the communities. Dissemination of any results relating to research in any format will require approval from communities, and researchers should honor requests for correcting misinterpretations. 50 Shared authorship with communities is one step in ensuring that research results are interpreted at least in part with communities. 50 Benefits of the research must be transparent, and shared with communities, especially relating to any commercialization that results. 20 The recommendations produced in this work represent one approach to engaging Indigenous communities in research, and puts a great emphasis on partnership and trust building practices, as well as in the important role of researchers' active reflection. This set of recommendations is different from others in that they overarch all stages of the research process and are focused on the actions that researchers should take in order to be mindful of their intentions, as well as respecting and honoring community interests.
These recommendations are intended to bridge the gaps for researchers who want to forge a new beginning to go forward, in collaboration with Indigenous communities.
Historical shortcomings cannot be forgotten-but they will help shape what the future of research can look like-a future where 'decolonizing methodologies' predominate, and power paradigms shift back to communities that experience the impact of the research.
One limitation of our study is that the methodology of qualitative synthesis may inevitably miss some of the recommendations currently in the literature. Despite this, we believe that our review is comprehensive, and is also informed by our experience within our own research programs. Another limitation is that the review is limited by what is available in the literature and may not address all questions that readers may encounter during the research process. We direct researchers to the local community to continuously seek feedback on desired community engagement processes that best fit to their individual cultural practices; being transparent about wanting to improve the researcher-community relationship is an important gesture to communities. Additionally, our review does not reflect the issue of sustainability of research projects as well as its results. We encourage readers to ensure proper community engagement, as well as an appropriate allocation of funds, in order to sustain projects and their positive results.

Conclusions
These recommendations synthesize and promote 37 actionable recommendations for community engagement approaches with Indigenous Peoples when engaging in health research, while reinforcing the critical elements of partnership and building trust, and active reflection by the researcher.

Declarations
Ethics approval and consent to participate-Not applicable Consent for publication-Not applicable Availability of data and materials-Data sharing is not applicable to this article as no datasets were generated or analysed during the current study.
Competing interests-The authors declare that they have no competing interests.  Tables   Table 1. Search Strategy Medline, CINAHL, Embase Google World Health Organization Database "Community Engagement" OR "Action Research" OR "Community-Based Participatory Research" OR "Participatory Research" OR "Community-Based Research" AND "Guideline" OR "Overview" OR "Principles" OR "Framework" OR "Recommendation" AND "Indigenous" OR "Aborigin*" OR "First Nation" OR "Inuit" OR "Metis" "Aboriginal engagement strategy health pdf" OR "Indigenous community engagement health pdf" OR "Indigenous community engagement health university pdf" "Indigenous action research" OR "Indigenous Community Engagement"  Appropriately estimate costs of conducting communitybased research. Transfer funds to the community to support the research process.

Ethical Research Processes
Clarify what data can be collected. Be honest in disclosing risks of research. Protect the privacy of participants, and respect wishes for individual and community identification.

Employment of Community Members
Hire community members and support capacity-building and self-determination activities.

Participant Recruitment and Data Collection
Use strategies to facilitate participation in research. Be efficient in research activities to minimize burden to individuals and the community.

Evaluating the Research Process
Continuously monitor the research process and respond to feedback from leadership and the community. Ensure ongoing relationship building. Reassess the appropriateness of continuing the research project.

Analysis and Interpretation Collective Interpretation
Interpret findings and results along with community members, privileging Indigenous knowledge and views. Identify benefits and outcomes of the research, and potential implications of the findings.

Leadership Review and Interpretation
Seek feedback from community leadership about the results and their implications and provide space for twoway knowledge transfer.

Community Approval
Pursue dissemination of results only if leadership and communities approve, and according to their terms and conditions.

Communication of Results
If approved to disseminate results in academic and public settings, ensure all products have been reviewed and approved by community leadership and members, with opportunity for co-authorship, and that ownership of data remains with communities. If approved to disseminate results to community, ensure all products are accessible and use methods of communication appropriate to the community.

Ethical Considerations
Ensure accurate presentation of the research process.

Attribution of Benefits of Research
Be transparent and share benefits of any commercialization that came about as a result of Indigenous data.