Partnering with First Nations in Northern British Columbia Canada to Reduce Inequity in Access to Genomic Research.

Indigenous-led, culturally safe health research and infrastructure are essential to address existing inequities and disparities for Indigenous Peoples globally. Biobanking, genomic research, and self-governance could reduce the existing divide and increase Indigenous participation in health research. While genomic research advances medicine, barriers persist for Indigenous patients to benefit. In northern BC, Canada, the Northern Biobank Initiative (NBI), with guidance from a Northern First Nations Biobank Advisory Committee (NFNBAC), has engaged in consultations with First Nations on biobanking and genomic research. Key informant interviews and focus groups conducted with First Nations leaders, Elders, Knowledge Keepers, and community members established culturally safe ways of biobanking and exploring genomic research. Strong support for a Northern British Columbia First Nations Biobank (NBCFNB) that will promote choice, inclusion, and access to health research opportunities emerged. The acceptance and enthusiasm for the development of this NBCFNB and its governance table highlight the shift towards Indigenous ownership and support of health research and its benefits. With engagement and partnership, community awareness, multigenerational involvement, and support from diverse and experienced healthcare leaders, the NBCFNB will establish this culturally safe, locally driven, and critically important research priority that may serve as an example for diverse Indigenous groups when designing their unique biobanking or genomic research opportunities.

Indigenous peoples and inclusion in clinical and genomic research: Understanding the history and navigating contemporary engagement.

Despite significant improvements in pediatric cancer survival outcomes, there remain glaring disparities in under-represented racial and ethnic groups that warrant mitigation by the scientific and clinical community. To address and work towards eliminating such disparities, the Pacific Pediatric Neuro-Oncology Consortium (PNOC) and Children's Brain Tumor Network (CBTN) established a Diversity, Equity, and Inclusion (DEI) working group in 2020. The DEI working group is dedicated to improving access to care for all pediatric patients with central nervous system (CNS) tumors, broadening diversity within the research community, and providing sustainable data-driven solutions. To this end, the DEI working group aims to coordinate regular educational sessions centered on critical DEI topics in pediatric research and clinical care of pediatric patients, with a focus on pediatric neuro-oncology. In April 2022, the group led a moderated panel of experts on Indigenous Peoples' rights and participation in clinical research activities. The following paper serves to provide the scientific community a perspective on how to prioritize the inclusion of Indigenous Peoples in research with cultural sensitivity and with the intent of improving not only representation, but patient outcomes regardless of patient race, ethnicity, or socioeconomic background.

Postoperative outcomes for Nunavut Inuit at a Canadian quaternary care centre: a retrospective cohort study.

BACKGROUND: Structural aspects of health care systems, such as limited access to specialized surgical and perioperative care, can negatively affect the outcomes and resource use of patients undergoing elective and emergency surgical procedures. The aim of this study was to compare postoperative outcomes of Nunavut Inuit and non-Inuit patients at a Canadian quaternary care centre. METHODS: We conducted a retrospective cohort study involving adult (age ≥ 18 yr) patients undergoing inpatient surgery from 2011 to 2018 at The Ottawa Hospital, the quaternary referral hospital for the Qikiqtaaluk Region of Nunavut. The study was designed and conducted in collaboration with Nunavut Tunngavik Incorporated. The primary outcome was a composite of in-hospital death or complications.Secondary outcomes included postoperative length of stay in hospital, adverse discharge disposition, readmissions within 30 days and total hospitalization costs. RESULTS: A total of 98 701 episodes of inpatient surgical care occurred among patients aged 18 to 104 years; 928 (0.9%) of these involved Nunavut Inuit, and 97 773 involved non-Inuit patients. Death or postoperative complication occurred more often among Nunavut Inuit than non-Inuit patients (159 [17.2%] v. 15 691 [16.1%]), which was significantly different after adjustment for age, sex, surgical specialty, risk and urgency (odds ratio [OR] 1.25, 95% confidence interval [CI] 1.03-1.51). This association was most pronounced in cases of cancer (OR 1.63, 95% CI 1.03-2.58) and elective surgery (OR 1.58, 95% CI 1.20-2.10). Adjusted rates of readmission, adverse discharge disposition, length of stay and total costs were significantly higher for Nunavut Inuit. INTERPRETATION: Nunavut Inuit had a 25% relative increase in their odds of morbidity and death after surgery at a major quaternary care hospital in Canada compared with non-Inuit patients, while also having higher rates of other adverse outcomes and resource use. An examination of perioperative systems involving patients, Inuit leadership, health care providers and governments is required to address these differences in health outcomes.

Issues postopératoires chez les Autochtones au Canada: revue systématique.

CONTEXTE: Il existe d'importantes iniquités en matière de santé chez les populations autochtones au Canada. La faible densité de la population canadienne et les populations en région éloignée posent un problème particulier à l'accès et à l'utilisation des soins chirurgicaux. Aucune synthèse des données sur les issues chirurgicales chez les Autochtones au Canada n'avait été publiée jusqu'à maintenant. MÉTHODES: Nous avons interrogé 4 bases de données pour recenser les études comparant les issues chirurgicales et les taux d'utilisation chez les adultes des Premières Nations, inuits et métis et chez les adultes non autochtones au Canada. Des évaluateurs indépendants ont réalisé toutes les étapes en parallèle. L'issue primaire était la mortalité; les issues secondaires comprenaient le taux d'utilisation des chirurgies, les complications et la durée du séjour à l'hôpital. Nous avons effectué une méta-analyse pour l'issue primaire à l'aide d'un modèle à effets aléatoires. Nous avons évalué les risques de biais à l'aide de l'outil ROBINS-I. RÉSULTATS: Vingt-huit études ont été analysées, pour un total de 1 976 258 participants (10,2 % d'Autochtones). Aucune étude ne portait précisément sur les populations inuites et métisses. Quatre études portant sur 7 cohortes ont fourni des données corrigées sur la mortalité pour 7135 participants (5,2 % d'Autochtones); les Autochtones présentaient un risque de décès après une intervention chirurgicale 30 % plus élevé que les patients non autochtones (rapport de risque combiné 1,30; IC à 95 % 1,09­1,54; I 2 = 81 %). Les complications étaient aussi plus fréquentes chez le premier groupe, notamment les infections (RC corrigé 1,63; IC à 95 % 1,13­2,34) et les pneumonies (RC 2,24; IC à 95 % 1,58­3,19). Les taux de différentes interventions chirurgicales étaient plus faibles, notamment pour les transplantations rénales, les arthroplasties, les chirurgies cardiaques et les accouchements par césarienne. INTERPRÉTATION: Les données disponibles sur les issues postopératoires et le taux d'utilisation de la chirurgie chez les Autochtones au Canada sont limitées et de faible qualité. Elles suggèrent que les Autochtones ont de plus hauts taux de décès et d'issues négatives postchirurgicales et qu'ils font face à des obstacles dans l'accès aux interventions chirurgicales. Ces conclusions indiquent qu'il y a un besoin de réévaluer en profondeur les soins chirurgicaux prodigués aux Autochtones au Canada pour leur assurer un accès équitable et améliorer les issues. NUMÉRO D'ENREGISTREMENT DU PROTOCOLE: PROSPERO-CRD42018098757.

The Cedar Project: exploring the role of colonial harms and childhood maltreatment on HIV and hepatitis C infection in a cohort study involving young Indigenous people who use drugs in two Canadian cities.

OBJECTIVES: This study examined associations between childhood maltreatment, colonial harms and sex/drug-related risks for HIV and hepatitis C virus (HCV) infection among young Indigenous people who use drugs. DESIGN: The Cedar Project is a cohort involving young Indigenous people who use drugs in British Columbia (BC), Canada. Indigenous collaborators, collectively known as the Cedar Project Partnership, govern the entire research process. SETTING: Vancouver is a large city on the traditional territory of the Coast Salish peoples. Prince George is a mid-sized city, on the traditional territory of Lheidli T'enneh First Nation. PARTICIPANTS: 420 participants completed the Childhood Trauma Questionnaire and returned for follow-up from 2003 to 2016. PRIMARY/SECONDARY OUTCOME MEASURES: Primary outcomes were HIV and HCV infection over the study period. Secondary outcomes included sex and substance use-related risks. RESULTS: Prevalence of childhood maltreatment was 92.6% experienced any maltreatment; 73.4% experienced emotional abuse; 62.6% experienced physical abuse; 60.3% experienced sexual abuse; 69.5% experienced emotional neglect and 79.1% experienced physical neglect. We observed significant associations between childhood maltreatment and apprehensions into residential schools and foster care. All maltreatment types were associated with higher odds of sex/substance use-related risks; sexual abuse was associated with higher odds of HCV infection (adjusted OR: 1.67; 95% CI 1.05 to 2.66; p=0.031). CONCLUSIONS: Findings reflect high prevalence of childhood maltreatment and their associations with HIV/HCV risk and HCV infection. Public health prevention and treatment initiatives must be trauma informed and culturally safe to support healing, health, and well-being.

Postoperative outcomes for Indigenous Peoples in Canada: a systematic review.

BACKGROUND: Substantial health inequities exist for Indigenous Peoples in Canada. The remote and distributed population of Canada presents unique challenges for access to and use of surgery. To date, the surgical outcome data for Indigenous Peoples in Canada have not been synthesized. METHODS: We searched 4 databases to identify studies comparing surgical outcomes and utilization rates of adults of First Nations, Inuit or Métis identity with non-Indigenous people in Canada. Independent reviewers completed all stages in duplicate. Our primary outcome was mortality; secondary outcomes included utilization rates of surgical procedures, complications and hospital length of stay. We performed meta-analysis of the primary outcome using random effects models. We assessed risk of bias using the ROBINS-I tool. RESULTS: Twenty-eight studies were reviewed involving 1 976 258 participants (10.2% Indigenous). No studies specifically addressed Inuit or Métis populations. Four studies, including 7 cohorts, contributed adjusted mortality data for 7135 participants (5.2% Indigenous); Indigenous Peoples had a 30% higher rate of death after surgery than non-Indigenous patients (pooled hazard ratio 1.30, 95% CI 1.09-1.54; I 2 = 81%). Complications were also higher for Indigenous Peoples, including infectious complications (adjusted OR 1.63, 95% CI 1.13-2.34) and pneumonia (OR 2.24, 95% CI 1.58-3.19). Rates of various surgical procedures were lower, including rates of renal transplant, joint replacement, cardiac surgery and cesarean delivery. INTERPRETATION: The currently available data on postoperative outcomes and surgery utilization rates for Indigenous Peoples in Canada are limited and of poor quality. Available data suggest that Indigenous Peoples have higher rates of death and adverse events after surgery, while also encountering barriers accessing surgical procedures. These findings suggest a need for substantial re-evaluation of surgical care for Indigenous Peoples in Canada to ensure equitable access and to improve outcomes. PROTOCOL REGISTRATION: PROSPERO-CRD42018098757.

Sociodemographic characteristics of women with invasive cervical cancer in British Columbia, 2004-2013: a descriptive study.

BACKGROUND: Although cancer screening has led to reductions in the incidence of invasive cervical cancer (ICC) across Canada, benefits of prevention efforts are not equitably distributed. This study investigated the sociodemographic characteristics of women with ICC in British Columbia compared with the general female population in the province. METHODS: In this descriptive study, data of individuals 18 years and older diagnosed with ICC between 2004 and 2013 were obtained from the BC Cancer Registry. Self-reported sociodemographic characteristics were derived from standardized health assessment forms (HAFs) completed upon admission in the BC Cancer Registry. Standardized ratios (SRs) were derived by dividing observed and age-adjusted expected counts by ethnicity or race, language, and marital, smoking and urban-rural status. Differences between observed and expected counts were tested using χ2 goodness-of-fit tests. General population data were derived from the 2006 Census, 2011 National Household Survey and 2011/12 Canadian Community Health Survey. RESULTS: Of 1705 total cases of ICC, 1315 were referred to BC Cancer (77.1%). Of those who were referred, 1215 (92.4%) completed HAFs. Among Indigenous women, more cases were observed (n = 85) than expected (n = 39; SR 2.16, 95% confidence interval [CI] 2.15-2.18). Among visible minorities, observed cases (n = 320) were higher than expected (n = 253; 95% CI 1.26-1.26). Elevated SRs were observed among women who self-identified as Korean (SR 1.78, 95% CI 1.76-1.80), Japanese (SR 1.77, 95% CI 1.74-1.79) and Filipino (SR 1.60, 95% CI 1.58-1.62); lower SRs were observed among South Asian women (SR 0.63, 95% CI 0.62-0.63). Elevated SRs were observed among current smokers (SR 1.34, 95% CI 1.33-1.34) and women living in rural-hub (SR 1.29, 95% CI 1.28-1.31) and rural or remote (SR 2.62, 95% CI 2.61-2.64) areas; the SR was lower among married women (SR 0.90, 95% CI 0.90-0.90). INTERPRETATION: Women who self-identified as visible minorities, Indigenous, current smokers, nonmarried and from rural areas were overrepresented among women with ICC. Efforts are needed to address inequities to ensure all women benefit from cervical cancer prevention.

Indigenous Men Adhering to Highly Active Antiretroviral Therapy: Navigating Through Culturally Unsafe Spaces While Caring for Their Health.

Introduction: Indigenous peoples in Canada have endured and continue to experience the impact of colonization by European settlers. The deleterious manifestations of intergenerational historic trauma (HT) are evidenced in the high HIV/AIDS epidemic-related premature mortality rates among Indigenous men, despite the availability of novel highly active antiretroviral therapies (HAARTs). Aim: The aims of this study were to explore the impact of historic trauma (HT) on treatment adherence and health promoting practices among Indigenous men living with HIV, and how resilience was both expressed and mediated by survivor status. Methods: This interpretive description study incorporated a cultural safety lens. Through partnership with the Vancouver Native Health Society, 36 male HT survivors were recruited using purposive and theoretical sampling. They told their lived experiences and health promoting practices with respect to HAART adherence through interviews and a focus group. Results: Two broad categories (findings) emerged: (1) resilience as facilitator of HAART adherence; and (2) differential views on HT's impact. Resilience was expressed through nine concepts. Conclusion: Most Indigenous men in this study demonstrate health promoting behavior, stay on HAART and have better health and well-being even if the environments they live in are marginalized or heavily stigmatizing. This study shows that areas of strength and adaptation, including factors promoting resilience can be harnessed to foster HAART adherence. With a consideration of these areas of strength and adaptation, this study offers implications for research and recommendations to improve treatment-adherent behavior, fostering healing from HT, and reducing HIV/AIDS-related deaths.

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.

Creating a Canadian Indigenous Research Network Against Cancer to Address Indigenous Cancer Disparities.

PURPOSE: In Canada, indigenous peoples' cancer rates have increased, but cancer screening rates tend to be lower. When coupled with poor cancer prognosis, treatment barriers, and inaccessible health care, indigenous patients with cancer experience many unmet needs. Further complicating their journey is a multijurisdictional system that complicates cancer control services, treatments, patient supports, and cancer surveillance. To address these issues, the Canadian Indigenous Research Network Against Cancer (CIRNAC) was developed. This article describes the forerunners and consultative process that created the network and the consensus model developed to ground this network with, by, and for indigenous peoples. METHODS: A consultative workshop was held to (1) establish and increase network membership, (2) enhance partnerships with indigenous communities and other researchers, and (3) develop an indigenous-led research program, new funding, and related initiatives. RESULTS: Participants viewed the CIRNAC as a reflective parallel network led by indigenous peoples that would identify research priorities within Canada, assess how these priorities align with indigenous patients' cancer care and research needs, and cross-check to see if these priorities align with each other. The network would also advocate for indigenous elders/knowledge holders and community grassroot processes to drive research and training, thus demonstrating the power of the community voice and lived experience in research. In addition, the network would foster research partnerships to investigate alternative indigenous models for cancer prevention, care, treatment, and support. CONCLUSION: The CIRNAC evolved as a viable vehicle to address cancer with, for, and by indigenous peoples. The network is guided by a preamble, a set of aims, and an inclusion engagement circle model. It is evolving through major world initiatives, with the aim of formally becoming an internationally linked national network.

Genomic Research Through an Indigenous Lens: Understanding the Expectations.

Indigenous scholars are leading initiatives to improve access to genetic and genomic research and health care based on their unique cultural contexts and within sovereign-based governance models created and accepted by their peoples. In the past, Indigenous peoples' engagement with genomicresearch was hampered by a lack of standardized guidelines and institutional partnerships, resulting in group harms. This article provides a comparative analysis of research guidelines from Canada, New Zealand, Australia, and the United States that pertain to Indigenous peoples. The goals of the analysis are to identify areas that need attention, support Indigenous-led governance, and promote the development of a model research policy framework for genomic research and health care that has international relevance for Indigenous peoples.

Peripheral artery disease among Indigenous Canadians: What do we know?

Indigenous Canadians experience a disproportionate burden of chronic atherosclerotic diseases, including peripheral artery disease (PAD). Despite an estimated prevalence of 800 000 patients with PAD in Canada, the burden of the disease among Indigenous Canadians is unclear. Available evidence suggests that this population has a higher prevalence of several major risk factors associated with PAD (diabetes, smoking and kidney disease). Unique socioeconomic, geographic and systemic obstacles affecting Indigenous Canadians' health and health care access may worsen chronic disease outcomes. Little is known about the cardiovascular and limb outcomes of Indigenous peoples with PAD. A novel approach via multidisciplinary vascular health teams engaging Indigenous communities in a culturally competent manner may potentially provide optimal vascular care to this population. Further research into the prevalence and outcomes of PAD among Indigenous Canadians is necessary to define the problem and allow development of more ffective initiatives to alleviate the disease burden in this marginalized group.

Au Canada, les membres des communautés autochtones sont affectés de manière disproportionnée par les maladies athéroscléreuses chroniques, y compris par l'artériopathie périphérique (AP). Malgré une prévalence estimée de 800 000 patients atteints d'AP au Canada, on ignore quel est le fardeau de la maladie chez les membres des communautés autochtones. Selon les données accessibles, cette population présente une prévalence plus élevée de plusieurs facteurs de risque majeurs associé à l'AP (diabète, tabagisme et maladie rénale). Certains obstacles socioéconomiques, géographiques et systémiques particuliers nuisent aussi à leur santé et leur compliquent l'accès aux soins de santé, ce qui pourrait aggraver les répercussions des maladies chroniques. On en sait peu sur l'issue des problèmes cardiovasculaires et circulatoires périphériques chez les membres des communautés autochtones touchés par l'AP. Une approche nouvelle, impliquant les communautés concernées et offerte de manière culturellement compétente par des uipes de santé vasculaire multidisciplinaires, serait propice à la prestation de soins vasculaires optimaux. Il faudra approfondir la recherche sur la prévalence et l'issue de l'AP chez les membres des communautés autochtones pour cerner le problème et permettre la mise en place d'initiatives plus efficaces afin d'alléger le fardeau de la maladie dans ce groupe marginalisé.

Measuring cancer in indigenous populations.

It is estimated that there are 370 million indigenous peoples in 90 countries globally. Indigenous peoples generally face substantial disadvantage and poorer health status compared with nonindigenous peoples. Population-level cancer surveillance provides data to set priorities, inform policies, and monitor progress over time. Measuring the cancer burden of vulnerable subpopulations, particularly indigenous peoples, is problematic. There are a number of practical and methodological issues potentially resulting in substantial underestimation of cancer incidence and mortality rates, and biased survival rates, among indigenous peoples. This, in turn, may result in a deprioritization of cancer-related programs and policies among these populations. This commentary describes key issues relating to cancer surveillance among indigenous populations including 1) suboptimal identification of indigenous populations, 2) numerator-denominator bias, 3) problems with data linkage in survival analysis, and 4) statistical analytic considerations. We suggest solutions that can be implemented to strengthen the visibility of indigenous peoples around the world. These include acknowledgment of the central importance of full engagement of indigenous peoples with all data-related processes, encouraging the use of indigenous identifiers in national and regional data sets and mitigation and/or careful assessment of biases inherent in cancer surveillance methods for indigenous peoples.

Canada's universal health-care system: achieving its potential.

Access to health care based on need rather than ability to pay was the founding principle of the Canadian health-care system. Medicare was born in one province in 1947. It spread across the country through federal cost sharing, and eventually was harmonised through standards in a federal law, the Canada Health Act of 1984. The health-care system is less a true national system than a decentralised collection of provincial and territorial insurance plans covering a narrow basket of services, which are free at the point of care. Administration and service delivery are highly decentralised, although coverage is portable across the country. In the setting of geographical and population diversity, long waits for elective care demand the capacity and commitment to scale up effective and sustainable models of care delivery across the country. Profound health inequities experienced by Indigenous populations and some vulnerable groups also require coordinated action on the social determinants of health if these inequities are to be effectively addressed. Achievement of the high aspirations of Medicare's founders requires a renewal of the tripartite social contract between governments, health-care providers, and the public. Expansion of the publicly funded basket of services and coordinated effort to reduce variation in outcomes will hinge on more engaged roles for the federal government and the physician community than have existed in previous decades. Public engagement in system stewardship will also be crucial to achieve a high-quality system grounded in both evidence and the Canadian values of equity and solidarity.

Cancer in First Nations people living in British Columbia, Canada: an analysis of incidence and survival from 1993 to 2010.

BACKGROUND: For First Nations (FN) peoples living in British Columbia (BC), little is known regarding cancer in the population. The aim of this study was to explore cancer incidence and survival in the FN population of BC and compare it to the non-FN population. METHODS: All new cancers diagnosed from 1993 to 2010 were linked to the First Nations Client File (FNCF). Age-standardized incidence rates (ASIR) and rate ratios, and 1- and 5-year cause-specific survival estimates and hazard ratios were calculated. Follow-up end date for survival was December 31, 2011 and follow-up time was censored at a maximum of 15 years. RESULTS: ASIR of colorectal cancer (male SRR = 1.42, 95% CI 1.25-1.61; female SRR = 1.21, 95% CI 1.06-1.38) and cervical cancer (SRR = 1.84, 95% CI 1.45-2.33) were higher overall in FN residents in BC, compared to non-FN residents. Incidence rates of almost all other cancers were generally similar or lower in FN populations overall and by sex, age, and period categories, compared to non-FN residents. Trends in ASIR over time were similar except for lung (increasing for FN, decreasing for non-FN) and colorectal cancers (increasing for FN, decreasing for non-FN). Conversely, survival rates were generally lower for FN, with differences evident for some cancer sites at 1 year following diagnosis. CONCLUSION: FN people living in BC face unique cancer issues compared to non-FN people. Higher incidence and lower survival associated with certain cancer types require further research to look into the likely multifaceted basis for these findings.

The Cedar Project: Negative health outcomes associated with involvement in the child welfare system among young Indigenous people who use injection and non-injection drugs in two Canadian cities.

OBJECTIVES: Indigenous leaders and child and family advocates are deeply concerned about the health impacts of the child welfare system, including HIV vulnerability. The objectives of this study were to describe the prevalence of having been apprehended into the child welfare system and associated HIV vulnerabilities among young Indigenous people who use drugs. METHODS: The Cedar Project is a cohort of young Indigenous people ages 14-30 years who use illicit drugs in Vancouver and Prince George, British Columbia. Multivariable logistic regression modeling determined associations between a history of involvement in the child welfare system and vulnerability to HIV infection. RESULTS: Of 605 participants, 65% had been taken from their biological parents. Median age of first apprehension was 4 years old. Having been sexually abused, having a parent who attended residential school and being HIV-positive were all independently associated with having been involved in the child welfare system. Participants who had been involved in the child welfare system were also more likely to have been homeless, paid for sex, diagnosed and hospitalized with mental illness, self-harmed, thought about suicide, and attempted suicide. Among participants who used injection drugs, those who had been involved in child welfare were more likely to have shared needles and overdosed. CONCLUSION: This study has found compelling evidence that young Indigenous people who use drugs in two cities in BC are experiencing several distressing health outcomes associated with child welfare involvement, including HIV infection. Jurisdictional reforms and trauma-informed programs that use culture as intervention are urgently needed.