Indigenous Community Engagement Research Articles

A Systematic Review Exploring Empirical Pharmacogenomics Research Within Global Indigenous Populations.

This systematic review aims to highlight the scope of pharmacogenomics research within global Indigenous populations. This review also explores the barriers and facilitators of pharmacogenomics research within this population. A systematic review of literature was conducted to identify and present an understanding of current empirical evidence demonstrating the conduct of genomics or pharmacogenomics research within global Indigenous populations (PROSPERO registration: CRD42021257226). Using key search terms, relevant databases were searched for articles published between January 2010 and July 2022. Screening, data extraction, and analysis was conducted using well-defined inclusion criteria. Quality assessment and risk of bias appraisal was conducted using the mixed methods appraisal tool. Indigenous community engagement and participation in genomics research was assessed using the social-ecological framework. From the 427 articles identified, 77 articles met inclusion criteria and underwent full-text screening. Of these, 30 articles were included in the final review, with 16 being quantitative and 14 either qualitative or mixed methods studies. Most studies were conducted with native Indigenous populations from the United States of America (36%). Content analysis revealed that studies either explored genetic variations associated with disease in Indigenous populations (23%) or markers for drug metabolism (30%) or were designed to understand perspectives of genomics research within this population (47%). Perspectives included the exploration of the role of participants in research, benefits or outcomes achieved from participation in genomics research, and levels of Indigenous engagement and participation in genomics research. This review highlights a growing gap in Indigenous genomics research globally. It presents several important considerations from Indigenous participants, identifying how researchers can co-create culturally safe and inclusive design, implementation, analysis, and subsequent outcomes of genomics research involving Indigenous people. Indigenous governance, self-determination and leadership is essential, with researchers required to be responsive to such fundamental partnerships for research to progress.

Indigenous Methodologies in International Research on Indigenous Family and Community Engagement

Indigenous research methodologies have been theorized by prominent Indigenous scholars over the past few decades and advocated for in research focused on Indigenous communities for their emancipatory power to reestablish Indigenous peoples’ expertise and self-determining and sovereignty rights over education and research. Western intrusion in Indigenous education and community focused research through colonial schools and Western research methodologies has negatively impacted the schooling experiences of Indigenous children, their families and communities, as well as the ways they are studied and depicted in research. Responding to calls for Indigenous methodologies in research focused on Indigenous communities, this literature review introduces an Indigenist Methodological Framework, developed from canonical scholarship on Indigenous methodologies, that we use to explore the applications (and potential misapplications) of Indigenous methodologies in 20 international studies about Indigenous family and community engagement. We aimed to determine if adherence to the elements of an Indigenist Methodological Framework served to disrupt extractive, exploitative, and damage-centered practices in and portrayals of Indigenous communities (common in Western research methodologies). Further, we critically analyzed the findings of these studies to see if they offered more culturally responsive and strength-based conceptualizations of Indigenous families and communities. We uncovered applications and misapplications of Indigenous methodologies that impacted researchers’ commitments to and actions towards establishing and maintaining relational accountability throughout and beyond the research while also influencing findings that, in most cases, challenged narrow and deficit-based perceptions and portrayals of Indigenous students, families, and community members.

Indigenous community engagement requirements for academic journals

This commentary emerged from an Indigenous research ethics and governance gathering and a scoping review completed by a diverse team of Indigenous and non-Indigenous scholars, which includes some of the co-authors of this article. A lack of detail regarding whether and how community engagement was carried out and reported in the context of published Indigenous health research in the Atlantic region of Canada were identified. This commentary builds on this work as well as other published works that emphasize the need to further ensure that Indigenous research is community based if not community led. Moreover, this commentary lends support to important changes to journal submission requirements regarding Indigenous health research submissions recently made at the Canadian Journal of Public Health through the work of Senior Editor Dr Janet Smylie and colleagues.

The Effect of Community-Based Exercise on Health Outcomes for Indigenous Peoples with Type 2 Diabetes: A Systematic Review.

Indigenous peoples globally experience a high burden of type 2 diabetes in comparison to non-Indigenous peoples. While community-based exercise interventions designed for type 2 diabetes (T2D) management have garnered success in non-Indigenous populations, they likely require adjustments to meet the needs of Indigenous people. This systematic review aims to determine if health outcomes in Indigenous peoples with T2D could be improved by community-based exercise programmes and the features of those programmes that best meet their needs. The CINAHL, Embase, Informit Indigenous Collection, Medline, PubMed, Scopus, SportDiscus, and Web of Science databases have been searched to identify peer-reviewed literature with original outcome data that report on the health effects of community-based exercise interventions for the management of T2D among Indigenous peoples. The Mixed Methods Appraisal Tool and Indigenous Community Engagement Tool were implemented to assess methodological quality. Three moderate-to-high-quality studies were selected for review, including participants of Polynesian or Native American Zuni Indian descent. Results indicated positive effects of group exercise on glycated haemoglobin (HbA1c), body mass index, body weight, total cholesterol, blood pressure, quality of life, and patient activation levels in high-adhering participants. This review concludes that community-based exercise interventions may improve health outcomes for Indigenous adults with T2D when conducted with strong community engagement.

FORWARD STEPS AND MISSTEPS: WHAT WE’VE LEARNED THROUGH THE PROCESS OF COMMUNITY-ENGAGED RESEARCH

Abstract Historically, research with Indigenous populations has disregarded community input, creating mistrust among tribal communities toward researchers, and resulting in communities limiting their involvement in research projects. Today, Indigenous communities are becoming more engaged in the research process, including developing their own tribal review boards, partnering with researchers throughout entire research process, as well as exercising their tribal sovereignty and housing their own data. These efforts have resulted in the development of rigorous Indigenous approval processes, increased engagement of Indigenous people and communities in research, and studies that have direct impacts on those engaged, as well as future generations, as well as protect both the Indigenous communities and the researchers. As a researcher trained to conduct culturally respectful and culturally safe research with Indigenous communities in Alaska, my team and I have gained first-hand experience with tribal research protocols, research processes, and the iterative process of developing relationships, navigating research ethics, as well as ensuring that findings are reflective of the community, its individual members, and the region. Despite our best efforts, research does not go as written in our grant proposals. This presentation will outline the complexities of navigating tribal approval processes in Alaska, highlight some of the challenges we have faced while conducting community-engaged research in Alaska; our lessons learned by doing it incorrectly. We will also share recommendations for researchers interested in working with Indigenous communities and how to work collaboratively with to avoid pitfalls, but also how to get back on track and develop lasting relationships.

Genomics and inclusion of Indigenous peoples in high income countries

Genomics research related to Indigenous people has been at worst exploitative and at best, retrospectively on a journey to improve effective engagement of Indigenous individuals and communities. Genomics can positively impact all stages of clinical management, and to improve genomic effectiveness researchers aggregate genomic data from diverse global sub-populations, such as shared ancestry groupings, as people within these groupings will have a greater proportion of shared DNA traits. While genomics is already being used worldwide to improve lives, its utility and effectiveness has not been maximized for individuals with Indigenous ancestry. Several large datasets of human genetic variation have been made publicly available, of which the most widely used is the Genome Aggregation Database (gnomAD), but none of these databases currently contain any population-specific data for Indigenous populations. There are many reasons why Indigenous people have been largely left out of genomics research and, because of this, miss out on the benefits offered. It is also clear that if research is to be effective, it needs to be done ‘with’ and not ‘on’ Indigenous communities. This systematic review of the literature regarding Indigenous peoples (in high income countries) and genomics aims to review the existing literature and identify areas of strength and weakness in study design and conduct, focusing on the effectiveness of Indigenous community engagement.

Reflecting on an Indigenist Methodology in Indigenous Family and Community Engagement Research

Indigenous and non-Indigenous researchers of Indigenous peoples and contexts have argued that any research involving Indigenous communities must align with Indigenous paradigms, follow critical cultural protocols, and promote emancipatory agendas. This ensures ethical and culturally appropriate research practices that prioritize community needs while placing the interests, experiences, and knowledge of Indigenous peoples at the center of research methodologies. Drawing from canonical scholars who have explicated and refined, over time, the meaning of Indigenous methodologies, this article first offers my synthesis of their collective conceptualizations. Next, I reflexively consider my application and, at times, misapplication of Indigenous methodologies with Indigenous and white participants in a study I carried out exploring Indigenous family and community-school engagement. I conclude by offering some implications for researchers who desire and have the responsibility to conduct research in ethical ways that honor Indigenous ways of knowing, being, and doing in research with/in Indigenous communities.

A'i Cofán Indigenous Community Engagement when Implementing Benthic Macroinvertebrate Monitoring as a Bioindicator Tool of Water Quality in the Ecuadorian Amazonia

A'i Cofán Indigenous Community Engagement when Implementing Benthic Macroinvertebrate Monitoring as a Bioindicator Tool of Water Quality in the Ecuadorian Amazonia

Rural health frontiers: exploring insights, lessons, and priority actions identified through a global 40-speaker webinar series on rural health equity.

Tackling rural health inequities requires equity-oriented approaches within health systems (eg across human resources, service delivery, information systems, health products, governance, financing) and action at cross-sectoral levels and with communities to address social and environmental determinants. During the July 2021 to March 2022 period, more than 40 experts contributed to an 8-part webinar series on rural health equity, sharing experiences, insights and lessons learnt for both systems strengthening and action on determinants. The webinar series was convened by WHO in collaboration with WONCA's Rural Working Party, OECD and agencies in the UN Inequalities Task Team subgroup on rural inequalities. From rural proofing to advancing a One Health approach, to research on barriers to health services, to ensuring an Indigenous health focus and community engagement in medical education, the series covered a range of topics relevant to diminishing rural health inequities. The 10-minute presentation will highlight emerging lessons, where more research activity, deliberation in policy and programming domains, and joined up action across stakeholders and sectors have been called for.

Boundary spanners: a critical role for enduring collaborations between Indigenous communities and mainstream scientists

The need to diversify science includes increasing both the diversity of science practitioners and the voices included in decision-making processes. Indigenous communities have been sought out to provide Indigenous knowledge to mainstream science research programs. As working across the mainstream science and community boundary is increasingly codified into the future of natural sciences, models for equitable collaboration and roles within project structures are needed. The goal of this project is to present a framework for collaboration between mainstream science and Indigenous communities. Specifically, we are addressing an under-recognized role central to partnership, a boundary spanner, who acts as the fulcrum facilitating collaboration. To better understand the role of boundary spanners in collaborative projects, we engaged six boundary spanners who participated in semi-structured interviews and workshops. Emergent common experiences and perspectives of how boundary spanners can be supported and their role in collaborative projects were defined and articulated. The boundary spanners identified 10 characteristics that contribute to equitable partnership between mainstream science and Indigenous communities. From the perspective of the boundary spanners, they detailed how collaborative projects can be structured to increase long-term partnerships and community support of research projects. Equitable collaboration between Indigenous communities and mainstream science is frequently only achieved when individuals at the interface of the mainstream science and Indigenous community have a high level of cultural competency. Equally important is the support provided to the boundary spanners and early engagement of partner Indigenous communities. Through the use of story and metaphor, we highlight the voices of boundary spanners and how their contributions can best be used.

Toward decolonizing sustainability research: a systematic process to guide critical reflections

With growing attention to the ethical and equity implications of Western-based approaches to research, the urgency of decolonizing research has emerged as a critical topic across academic disciplines, including the field of sustainability. The complexity and messiness of this endeavour, however, may translate into uncertainty among researchers about how and where to start. This is partly due to a lack of guidance, training, and accountability mechanisms through Western academic institutions. In this paper, we advance a three-step process that systematically guides critical reflection toward respectful engagement of local and Indigenous communities, as well as other marginalized groups, by drawing on the literature and on learnings from a recent graduate student-led initiative. The process we develop aims to provide a pragmatic starting point for decolonizing research and a counterpoint to conventional modes of research. Such a process will not only foster accountability, respect, and reciprocity but also movement toward locally relevant, context-appropriate, and action-oriented research outcomes. Our three-step process also challenges Western-based and extractive research practices and seeks to facilitate a shift in mindset about the purpose of research and how to approach it.

Pathways Taken By One Canadian College to Advance Reconciliation and the Creation of a New Reconciliation Engagement Program with Indigenous Peoples

Canada-wide efforts are being made to close the gaps that exist in the health and wellness of Indigenous Peoples besieged by a past of cultural genocide, oppression, and exploitation. The purpose of this essay is to provide members of Colleges and Institutes of Canada (CICan) access to a proposed program to engage in reconciliation, with the objective of facilitating Indigenous community engagement through social innovation, training, and applied research. The proposed program is exemplified through the relationship built between Collège Boréal and Dokis First Nation located in northern Ontario. The proposed Reconciliation Engagement Program consists of two streams that encourage CICan members to utilize, among other possible decolonizing methods, the tenets of a Critical Indigenous Methodology to value and foreground local Indigenous voices. The first stream would consist of networking activities to establish relationships, understand Chief and Council’s vision, and seek opportunities for capacity building within an Indigenous community. The second stream would be project-based so that capital costs and human resources can be accessed to complete each project. While proposing the new program is important, the present essay can also be used to exemplify how Canadian colleges and polytechnics can adopt a decolonizing approach during their engagement with Indigenous communities.

Dr. Chelsea Gabel

Dr. Chelsea Gabel is the Canada Research Chair in Indigenous Well-being, Community Engagement, and Innovation, Director of the Indigenous Studies program at McMaster University, and former Director of the McMaster Indigenous Research Institute. As an Indigenous scholar, her work integrates community-based participatory and arts-based research methods in studying Indigenous health and well-being. Dr. Gabel’s interests include understanding how digital technology can be used for healing and empowerment of elders and youth. She also examines the pressures facing Arctic communities as they prepare for resource development. Dr. Gabel combines community- and arts-based research methods with academic rigour to create positive social change for Indigenous communities through public policy.

The 11th Canadian Symposium on Hepatitis C Virus: 'Getting back on track towards hepatitis C elimination'.

Hepatitis C virus (HCV) affects approximately 204,000 Canadians. Safe and effective direct-acting antiviral therapies have contributed to decreased rates of chronic HCV infection and increased treatment uptake in Canada, but major challenges for HCV elimination remain. The 11th Canadian Symposium on Hepatitis C Virus took place in Ottawa, Ontario on May 13, 2022 as a hybrid conference themed 'Getting back on track towards hepatitis C elimination.' It brought together research scientists, clinicians, community health workers, patient advocates, community members, and public health officials to discuss priorities for HCV elimination in the wake of the COVID-19 pandemic, which had devastating effects on HCV care in Canada, particularly on priority populations. Plenary sessions showcased topical research from prominent international and national researchers, complemented by select abstract presentations. This event was hosted by the Canadian Network on Hepatitis C (CanHepC), with support from the Public Health Agency of Canada and the Canadian Institutes of Health Research and in partnership with the Canadian Liver Meeting. CanHepC has an established record in HCV research and in advocacy activities to address improved diagnosis and treatment, and immediate and long-term needs of those affected by HCV infection. The Symposium addressed the remaining challenges and barriers to HCV elimination in priority populations and principles for meaningful engagement of Indigenous communities and individuals with living and lived experience in HCV research. It emphasized the need for disaggregated data and simplified pathways for creating and monitoring interventions for equitably achieving elimination targets.

Comparison of Study Quality as Determined by Standard Research and Community Engagement Metrics: A Pilot Study on Breast Cancer Research in Urban, Rural, and Remote Indigenous Communities.

The purpose of this review is to compare research evaluation tools to determine whether the tools typically used for assessing the quality of research adequately address issues of Indigenous health and culture, particularly when the studies are intended to benefit Indigenous peoples in urban, regional, rural, and remote settings. Our previously published systematic review evaluated studies about breast cancer using a modified Indigenous community engagement tool (CET). In this study, we evaluated the same studies using two commonly used tools: the Critical Appraisal Skills Programme (CASP) for qualitative research; and the Effective Public Health Practice Project (EPHPP) for quantitative research. The results were then compared to ascertain whether there was alignment between performances in terms of engagement and the CASP/EPHPP metrics. Of the 15 papers, 3 papers scored weakly on both metrics, and are therefore the least likely to offer reliable findings, while 2 papers scored strongly on both metrics, and are therefore the most likely to offer reliable findings. Beyond this summation, it was clear that the results did not align and, therefore, could not be used interchangeably when applied to research findings intended to benefit Indigenous peoples. There does not appear to be a pattern in the relationship between the reliability of the studies and the study settings. In order to address disparities in health outcomes, we must assess research through a typical research quality and cultural engagement and settings lens, ensuring that there is rigour in all aspects of the studies.

Reclaiming archives: guest editorial

Abstract Highlighting perspectives from First Nations peoples whose cultural heritage is held in archives of various types, this article sets the scene for this special edition on “Reclaiming Archives.” Emerging protocols for Indigenous community engagement with archiving institutions have been driven by community demands for access, digitisation and return of archival cultural heritage records, and supported by various peak professional organisations such as the International Council on Archives, the International Council of Museums and the Indigenous Archives Collective. A complex history of exploitation, resistance and trauma surrounds First Nations cultural records created during Australia“s “Assimilation Era“ (roughly 1935-1975), and several contributions to the volume explore the implications of this colonial past for management and reclamation of such archival records today. Indeed, the authors contend that institutions today have much to learn from engagement with community members seeking to reappropriate their cultural records. The essay finishes by relating the issues outlined above to the articles presented in this issue, which provide perspectives from Australia and internationally regarding Indigenous cultural collections, with special reference to research-based collections of Indigenous music and dance.

In Conversation with the Ancestors: Indigenizing Archaeological Narratives at Acadia National Park, Maine

In North America, Indigenous pasts are publicly understood through narratives constructed by archaeologists who bring Western ideologies to bear on their inquiries. The resulting Eurocentric presentations of Indigenous pasts shape public perceptions of Indigenous peoples and influence Indigenous perceptions of self and of archaeology. In this paper we confront Eurocentric narratives of Indigenous pasts, specifically Wabanaki pasts, by centering an archaeological story on relationality between contemporary and past Indigenous peoples. We focus on legacy archaeological collections and eroding heritage sites in Acadia National Park, Maine. We present the “Red Paint People” myth as an example of how Indigenous pasts become distorted through archaeological narratives influenced by Western ideologies and offer a framework for indigenizing archaeological narratives constructed previously through Western lenses, using Indigenous language and community engagement to carry out the study.

Understanding human-flying fox interactions in the Agusan Marsh Wildlife Sanctuary as basis for conservation policy interventions

There is no documented flying fox hunting study done in the Agusan Marsh Wildlife Sanctuary (AMWS) which is known to harbor many threatened wildlife species. The Large Flying Fox Pteropus vampyrus is known to be threatened by hunting in the AMWS despite existing laws, such as the Wildlife Act. We conducted semi-structured interviews from September 2017 to January 2018 with 240 hunters in 10 villages through purposive sampling to determine the socio-demographic and economic profile of the hunters, their conservation awareness, perceptions on the monitoring scheme and enforcement, possible hunting patterns, and hunting drivers. Results showed that farming and fishing are the most common livelihoods of hunters. Most hunters achieved an education at the elementary level (42.9%), and belong to a household with 4–6 members (55.5%), often with only one member having a meager daily income (80.7%). Annual flooding was the main economic constraint to the hunters. Largely comprised of indigenous Manobos (62.9%), the majority of hunters did not believe in avoiding taboo species (85.4%). Most of the hunters were unaware of laws protecting Wildlife (62.9%) and unable to differentiate between threatened and non-threatened species (86.3%). Poor implementation of the monitoring scheme and insufficient enforcement were also observed in AMWS. Kites with hooks (55%) and guns (31.7%) were used to hunt P. vampyrus mostly for local consumption (83.3%). Multivariate analysis revealed that daily income and engagement in conservation negatively affected hunting intensity. With many constraints in totally banning hunting in poor and wildlife-dependent indigenous communities in AMWS, flexible policies must be considered. It is more reasonable and realistic to consider science-based hunting quotas in policy interventions to balance conservation and human welfare. Positive behavioral change towards sustainable hunting and trading bans requires a combination of effective education campaigns, engagement of indigenous communities in conservation, improved enforcement, and sustainable livelihood programs.

Beyond platitudes: a qualitative study of Australian Aboriginal people's perspectives on biobanking.

Biobanks are vital resources for genetics and genomics, and it is broadly recognised that for maximal benefit it is essential that they include samples and data from diverse ancestral groups. The inclusion of First Nations people, in particular, is important to prevent biobanking research from exacerbating existing health inequities, and to ensure that these communities share in the benefits arising from research. To explore the perspectives of Australian Aboriginal people whose tissue - or that of their family members - has been stored in the biobank of the National Centre for Indigenous Genomics (NCIG). Semi-structured interviews with 42 Aboriginal people from the Titjikala, Galiwinku, Tiwi Islands, Yarrabah, Fitzroy Crossing, Derby, One Arm Point and Mulan communities, as well as a formal discussion with A. Hermes, an Indigenous Community Engagement Coordinator at the NCIG who had conducted the interviews. The interviews and the structured discussion were double coded using a procedure informed by Charmaz's outline of grounded theory analysis and Morse's outline of the cognitive basis of qualitative research. In this article, we report on A. Hermes' interviews with members from the above Aboriginal communities, as well as on her personal views, experiences, and interpretations of the interviews she conducted with other community members. We found that participation in the NCIG biobank raised issues around broken trust, grief and loss, but also - somewhat unexpectedly - was perceived as a source of empowerment, hope and reconnection. This research reminds us (again) of the need to engage deeply with communities in order to respond appropriately with respect for their cultural values and norms, and to develop culturally relevant policies and processes that enhance the benefits of biobank participation and minimise potential harms.

Virtual cultural landscapes: Geospatial visualizations of past environments

AbstractRecent advances in spatial and remote sensing technology have led to new methods in archaeological site identification and reconstruction, allowing archaeologists to investigate landscapes and sites on multiple scales. These remotely conducted surveys create virtual cultural landscapes and seascapes that archaeologists and the public interact with and experience, often better than traditional maps. Our study examines landscape reconstruction and archaeological site classifications from a phenomenological and human behavioural ecology (HBE) perspective. HBE aims to reconstruct how humans interacted with these places as part of their active and passive decision making. Through temporal reconstructions, archaeologists and others can experience and interpret past landscapes and subtle changes in cultural land‐ and seascapes. Here, we evaluate the use of remotely sensed data (lidar, satellite imagery, sonar, radar, etc.) for developing virtual cultural landscapes while also incorporating Indigenous perspectives. Our study compares two vastly different landscapes and perspectives: a seascape in coastal Alaska, USA, and a neotropical jungle in Belize, Central America. By incorporating ethnographic accounts, oral histories, Indigenous traditional knowledge and community engagement, archaeologists can develop new tools to understand decisions made in the past, especially pertaining to settlement selection and resource procurement. These virtual reconstructions become cognitive images of a possible place that the observer experiences. Virtual cultural landscapes allow archaeologists to reproduce landscapes that may otherwise be invisible and present them to different publics. These processes elucidate how landscapes changed over time based on human behaviours while simultaneously allowing archaeologists to engage with Indigenous communities and the public in the protection of prehistoric and historic sites and sacred spaces through cultural heritage management.