Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data.

Addressing Indigenous rights and interests in genetic resources has become increasingly challenging in an open science environment that promotes unrestricted access to genomic data. Although Indigenous experiences with genetic research have been shaped by a series of negative interactions, there is increasing recognition that equitable benefits can only be realized through greater participation of Indigenous communities. Issues of trust, accountability and equity underpin Indigenous critiques of genetic research and the sharing of genomic data. This Perspectives article highlights identified issues for Indigenous communities around the sharing of genomic data and suggests principles and actions that genomic researchers can adopt to recognize community rights and interests in data.

Commercial tobacco and indigenous peoples: a stock take on Framework Convention on Tobacco Control progress.

BACKGROUND: The health status and needs of indigenous populations of Australia, Canada and New Zealand are often compared because of the shared experience of colonisation. One enduring impact has been a disproportionately high rate of commercial tobacco use compared with non-indigenous populations. All three countries have ratified the WHO Framework Convention on Tobacco Control (FCTC), which acknowledges the harm caused to indigenous peoples by tobacco. AIM AND OBJECTIVES: We evaluated and compared reporting on FCTC progress related to indigenous peoples by Australia, Canada and New Zealand as States Parties. The critiqued data included disparities in smoking prevalence between indigenous and non-indigenous peoples; extent of indigenous participation in tobacco control development, implementation and evaluation; and what indigenous commercial tobacco reduction interventions were delivered and evaluated. DATA SOURCES: We searched FCTC: (1) Global Progress Reports for information regarding indigenous peoples in Australia, Canada and New Zealand; and (2) country-specific reports from Australia, Canada and New Zealand between 2007 and 2016. STUDY SELECTION: Two of the authors independently reviewed the FCTC Global and respective Country Reports, identifying where indigenous search terms appeared. DATA EXTRACTION: All data associated with the identified search terms were extracted, and content analysis was applied. RESULTS: It is difficult to determine if or what progress has been made to reduce commercial tobacco use by the three States Parties as part of their commitments under FCTC reporting systems. There is some evidence that progress is being made towards reducing indigenous commercial tobacco use, including the implementation of indigenous-focused initiatives. However, there are significant gaps and inconsistencies in reporting. Strengthening FCTC reporting instruments to include standardised indigenous-specific data will help to realise the FCTC Guiding Principles by holding States Parties to account and building momentum for reducing the high prevalence of commercial tobacco use among indigenous peoples.

Health and well-being needs of Indigenous adolescents: a protocol for a scoping review of qualitative studies.

INTRODUCTION: Improving the health of Indigenous adolescents is central to addressing the health inequities faced by Indigenous peoples. To achieve this, it is critical to understand what is needed from the perspectives of Indigenous adolescents themselves. There have been many qualitative studies that capture the perspectives of Indigenous young people, but synthesis of these has been limited to date. METHODS AND ANALYSIS: This scoping review seeks to understand the specific health needs and priorities of Indigenous adolescents aged 10-24 years captured via qualitative studies conducted across Australia, Aotearoa New Zealand, Canada, the USA, Greenland and Sami populations (Norway and Sweden). A team of Indigenous and non-Indigenous researchers from these nations will systematically search PubMed (including the MEDLINE, PubMed Central and Bookshelf databases), CINAHL, Embase, Scopus, the Informit Indigenous and Health Collections, Google Scholar, Arctic Health, the Circumpolar Health Bibliographic Database, Native Health Database, iPortal and NZresearch.org, as well as specific websites and clearinghouses within each nation for qualitative studies. We will limit our search to articles published in any language during the preceding 5 years given that needs may have changed significantly over time. Two independent reviewers will identify relevant articles using a two-step process, with disagreements resolved by a third reviewer and the wider research group. Data will then be extracted from included articles using a standardised form, with descriptive synthesis focussing on key needs and priorities. This scoping review will be conducted and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews guidelines. ETHICS AND DISSEMINATION: Ethics approval was not required for this review. Findings will be disseminated via a peer-reviewed journal article and will inform a broader international collaboration for Indigenous adolescent health to develop evidence-based actions and solutions.

Innovative approaches in public health research: applying life course epidemiology to aboriginal health research.

A life course epidemiology approach embraces the complexity of disease risk and acknowledges the long-term effects of physical, social, psychological, and behaviour pathways, operating across an individual's life, a community's generation, and a population's development, on health and well-being. Researchers who adopt a life course epidemiology approach broaden their ability to understand, explain, and prescribe ways to mitigate the effects of chronic diseases and reduce risk factor development and interaction. Although there are many diseases that explicate the importance and usefulness of a life course approach for Aboriginal health research, this commentary focuses on the benefits for understanding chronic respiratory diseases in Aboriginal populations. The hope is that this will expose the benefits of a life course approach for the study of Aboriginal health research and draw attention to the need for well-rounded, high-quality Aboriginal respiratory health research.

Effective knowledge translation approaches and practices in Indigenous health research: a systematic review protocol.

BACKGROUND: Effective knowledge translation (KT) is critical to implementing program and policy changes that require shared understandings of knowledge systems, assumptions, and practices. Within mainstream research institutions and funding agencies, systemic and insidious inequities, privileges, and power relationships inhibit Indigenous peoples' control, input, and benefits over research. This systematic review will examine literature on KT initiatives in Indigenous health research to help identify wise and promising Indigenous KT practices and language in Canada and abroad. METHODS: Indexed databases including Aboriginal Health Abstract Database, Bibliography of Native North Americans, CINAHL, Circumpolar Health Bibliographic Database, Dissertation Abstracts, First Nations Periodical Index, Medline, National Indigenous Studies Portal, ProQuest Conference Papers Index, PsycInfo, Social Services Abstracts, Social Work Abstracts, and Web of Science will be searched. A comprehensive list of non-indexed and grey literature sources will also be searched. For inclusion, documents must be published in English; linked to Indigenous health and wellbeing; focused on Indigenous people; document KT goals, activities, and rationale; and include an evaluation of their KT strategy. Identified quantitative, qualitative, and mixed methods' studies that meet the inclusion criteria will then be appraised using a quality appraisal tool for research with Indigenous people. Studies that score 6 or higher on the quality appraisal tool will be included for analysis. DISCUSSION: This unique systematic review involves robust Indigenous community engagement strategies throughout the life of the project, starting with the development of the review protocol. The review is being guided by senior Indigenous researchers who will purposefully include literature sources characterized by Indigenous authorship, community engagement, and representation; screen and appraise sources that meet Indigenous health research principles; and discuss the project with the Indigenous Elders to further explore the hazards, wisdom, and processes of sharing knowledge in research contexts. The overall aim of this review is to provide the evidence and basis for recommendations on wise practices for KT terminology and research that improves Indigenous health and wellbeing and/or access to services, programs, or policies that will lead to improved health and wellbeing. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42016049787 .

Research with Arctic peoples: unique research opportunities in heart, lung, blood and sleep disorders. Working group summary and recommendations.

Arctic peoples are spread over eight countries and comprise 3.74 million residents, of whom 9% are indigenous. The Arctic countries include Canada, Finland, Greenland (Denmark), Iceland, Norway, Russia, Sweden and the United States. Although Arctic peoples are very diverse, there are a variety of environmental and health issues that are unique to the Arctic regions, and research exploring these issues offers significant opportunities, as well as challenges. On July 28-29, 2004, the National Heart, Lung, and Blood Institute and the Canadian Institutes of Health Research co-sponsored a working group entitled "Research with Arctic Peoples: Unique Research Opportunities in Heart, Lung, Blood and Sleep Disorders". The meeting was international in scope with investigators from Greenland, Iceland and Russia, as well as Canada and the United States. Multiple health agencies from Canada and the United States sent representatives. Also attending were representatives from the International Union for Circumpolar Health (IUCH) and the National Indian Health Board. The working group developed a set of ten recommendations related to research opportunities in heart, lung, blood and sleep disorders; obstacles and solutions to research implementation; and ways to facilitate international comparisons. These recommendations are expected to serve as an agenda for future research.

Tobacco smoking status among Aboriginal youth.

OBJECTIVE: To determine what factors are associated with the smoking status among some of the spectators and participants of the 2002 North American Indigenous Games. STUDY DESIGN: Cross-sectional. METHODS: A survey inquiring about tobacco use and lifestyle behaviours was implemented at the North American Indigenous Games in Winnipeg, Canada. This survey, entitled the 2002 Aboriginal Youth Lifestyle Survey, included Aboriginal youth between the ages 12 to 22 years old. RESULTS: There were 570 survey participants (53.5% female) that met the inclusion criteria. It was determined that smoking initiation began earlier than what is reported in the literature and did not occur beyond age 18. The logistic regression analysis revealed that the variables age,peer smokings, self-rated health, and participation status at the NAIG, were associated with smoking status in this sample. CONCLUSION: These findings demonstrate that Aboriginal youth require different tobacco control strategies compared to non-Aboriginal youth. While these youth experience similar risk factors associated with smoking status, based on the earlier initiation age, tobacco prevention needs to commence much earlier. This study also showcases the positive role that involvement in physical activity plays in building resiliency among Aboriginal youth.

The work process and care production in a Brazilian indigenous health service / Proceso de trabajo y producción de la atención en una institución brasileña de salud indígena / Processo de trabalho e produção do cuidado em um serviço de saúde indígena no Brasil

Objective: To understand the constitutive elements of the work process and care production in an Indigenous Health Support Service. Methods: Case study. Systematic observation and semi-structured interviews were conducted in January and February of 2012. The participants were 10 nursing professionals of an Indigenous Health Support Center, located in Mato Grosso do Sul state, Brazil. The work process was used as a conceptual and analytical category. Results: Through interpretative analysis, the data were organized into three categories. The results showed that care production was focused on procedures and guided by rigid institutional rules and bureaucracy. The prioritization of institutional rules and procedures was detrimental to the provision of person-centered care. Conclusion: The temporary employment contracts and rigid bureaucratic organization generated a tense work environment. These aspects do not maximize the efforts of the nursing staff to provide person-centered care.

Objetivo: Comprender los elementos constitutivos del proceso de trabajo y la producción de la atención en una institución de apoyo a la salud indígena. Métodos: Estudio de caso realizado en una casa de apoyo de salud indígena, en Mato Grosso do Sul, Brasil. Fueron realizadas entrevistas semiestructuradas y la observación sistemática con 10 profesionales de enfermería. Se realizó el análisis temático, utilizando el proceso de trabajo como referencial teórico. Resultados: Emergieron tres categorías: la atención se centra en procedimientos técnicos y es guiada por burocracia y normas institucionales; hay una priorización de las normas; y procedimientos institucionales a expensas de la atención centrada en el sujeto. Conclusiones: El contrato de trabajo temporal y la organización burocrática producen un ambiente tenso en el trabajo, lo que no potencializa los esfuerzos del personal de enfermería en prestar una atención centrada al indígena.

Objetivo: Compreender os elementos constitutivos do processo de trabalho e a produção do cuidado em uma instituição de apoio à saúde indígena. Métodos: Estudo de caso. Procedeu-se observação sistemática e entrevistas semiestruturadas com 10 profissionais de enfermagem de fevereiro a janeiro de 2012 em uma Casa de Apoio à Saúde do Índio, Mato Grosso do Sul, Brasil. Realizou-se análise interpretativa, utilizando processo de trabalho como categoria conceitual e analítica. Resultados: Obteve-se três categorias. A produção do cuidado tem como foco procedimentos técnicos e normas institucionais rígidas. Há priorização de regras institucionais e procedimentos em detrimento do cuidado singularizado. Conclusões: O vínculo empregatício por contrato temporário e a organização burocrática geram um clima tenso de trabalho. Tais aspectos não potencializam os esforços dos trabalhadores em prestar o cuidado centrado na pessoa.

Improving the health of future generations: the Canadian Institutes of Health Research Institute of Aboriginal Peoples' Health.

In the past and in the present, research studies and media reports have focused on pathology and dysfunction in aboriginal communities and have often failed to present a true and complete picture of the aboriginal experience. The Canadian Institutes of Health Research Institute of Aboriginal Peoples' Health is a national strategic research initiative led by both the aboriginal and research communities. This initiative aims to improve aboriginal health information, develop research capacity, better translate research into practice, and inform public health policy with the goal of improving the health of indigenous peoples.