Indigenous identity identification in administrative health care data globally: A scoping review.

OBJECTIVE: Both Indigenous and non-Indigenous governments and organizations have increasingly called for improved Indigenous health data in order to improve health equity among Indigenous peoples. This scoping review identifies best practices, potential consequences and barriers for advancing Indigenous health data and Indigenous data sovereignty globally. METHODS: A scoping review was conducted to capture the breadth and nature of the academic and grey literature. We searched academic databases for academic records published between 2000 and 2021. We used Google to conduct a review of the grey literature. We applied Harfield's Aboriginal and Torres Strait Islander Quality Appraisal Tool (QAT) to all original research articles included in the review to assess the quality of health information from an Indigenous perspective. RESULTS: In total, 77 academic articles and 49 grey literature records were included. Much of the academic literature was published in the last 12 years, demonstrating a more recent interest in Indigenous health data. Overall, we identified two ways for Indigenous health data to be retrieved. The first approach is health care organizations asking clients to voluntarily self-identify as Indigenous. The other approach is through data linkage. Both approaches to improving Indigenous health data require awareness of the intergenerational consequences of settler colonialism along with a general mistrust in health care systems among Indigenous peoples. This context also presents special considerations for health care systems that wish to engage with Indigenous communities around the intention, purpose, and uses of the identification of Indigenous status in administrative databases and in health care settings. Partnerships with local Indigenous nations should be developed prior to the systematic collection of Indigenous identifiers in health administrative data. The QAT revealed that many research articles do not include adequate information to describe how Indigenous communities and stakeholders have been involved in this research. CONCLUSION: There is consensus within the academic literature that improving Indigenous health should be of high priority for health care systems globally. To address data disparities, governments and health organizations are encouraged to work in collaboration with local Indigenous nations and stakeholders at every step from conceptualization, data collection, analysis, to ownership. This finding highlights the need for future research to provide transparent explanation of how meaningful Indigenous collaboration is achieved in their research.

Incidence and outcomes of critical illness in indigenous peoples: a systematic review and meta-analysis.

BACKGROUND: Indigenous Peoples experience health inequities and racism across the continuum of health services. We performed a systematic review and meta-analysis of the incidence and outcomes of critical illness among Indigenous Peoples. METHODS: We searched Ovid MEDLINE/PubMed, Ovid EMBASE, Google Scholar, and Cochrane Central Register of Controlled Trials (inception to October 2022). Observational studies, case series of > 100 patients, clinical trial arms, and grey literature reports of Indigenous adults were eligible. We assessed risk of bias using the Newcastle-Ottawa Scale and appraised research quality from an Indigenous perspective using the Aboriginal and Torres Strait Islander Quality Assessment Tool. ICU mortality, ICU length of stay, and invasive mechanical ventilation (IMV) were compared using risk ratios and mean difference (MD) for dichotomous and continuous outcomes, respectively. ICU admission was synthesized descriptively. RESULTS: Fifteen studies (Australia and/or New Zealand [n = 12] and Canada [n = 3]) were included. Risk of bias was low in 10 studies and moderate in 5, and included studies had minimal incorporation of Indigenous perspectives or consultation. There was no difference in ICU mortality between Indigenous and non-Indigenous (RR 1.14, 95%CI 0.98 to 1.34, I2 = 87%). We observed a shorter ICU length of stay among Indigenous (MD - 0.25; 95%CI, - 0.49 to - 0.00; I2 = 95%) and a higher use for IMV among non-Indigenous (RR 1.10; 95%CI, 1.06 to 1.15; I2 = 81%). CONCLUSION: Research on Indigenous Peoples experience with critical care is poorly characterized and has rarely included Indigenous perspectives. ICU mortality between Indigenous and non-Indigenous populations was similar, while there was a shorter ICU length of stay and less mechanical ventilation use among Indigenous patients. Systematic Review Registration PROSPERO CRD42021254661; Registered: 12 June, 2021.

Action, Accountability and Transparency for Indigenous Health Systems Safety.

Anti-Indigenous racism is prevalent in Canada, especially within healthcare systems. Consequences are catastrophic, including deaths of Indigenous patients. Systems change and critical education guided by the Indigenous Peoples and research into how racism operates within healthcare settings are needed. In Alberta, promising initiatives are under way, including a First Nations-led initiative identifying racism and colonialism as key health determinants, novel experiential education, transformative education for senior health leaders and reframing health system measures to reflect Indigenous Peoples' perspectives. The time is now for comprehensive action toward eliminating racism within healthcare systems and fostering Indigenous health systems safety. Indigenous lives depend on it.

Indigenous gender and wellness: a scoping review of Canadian research.

This scoping review examined research publications related to health and/or wellness along with gender among Canadian Indigenous populations. The intent was to explore the range of articles on this topic and to identify methods for improving gender-related health and wellness research among Indigenous peoples. Six research databases were searched up to 1 February 2021. The final selection of 155 publications represented empirical research conducted in Canada, included Indigenous populations, investigated health and/or wellness topics and focused on gender. Among the diverse range of health and wellness topics, most publications focused on physical health issues, primarily regarding perinatal care and HIV- and HPV-related issues. Gender diverse people were seldom included in the reviewed publications. Sex and gender were typically used interchangeably. Most authors recommended that Indigenous knowledge and culture be integrated into health programmes and further research. More health research with Indigenous peoples must be conducted in ways that discern sex from gender, uplift the strengths of Indigenous peoples and communities, privilege community perspectives, and attend to gender diversity; using methods that avoid replicating colonialism, promote action, change stories of deficit, and build on what we already know about gender as a critical social determinant of health.

Commentary: Developing Relationships through Trust in Indigenous Health Research.

Developing strong relationships between researchers and Indigenous partners and communities is crucial for mutually beneficial and appropriate Indigenous health research. However, explanations on the need for strong relationships and how they may be achieved are not often found within the research literature. Given the history of mistrust, exploitation and even unethical research practices with Indigenous populations, collaborative research partnerships necessitate good relationships. For our long-standing community-based participatory research partnership, trust in our relationships has been foundational. Several key elements are central to developing this trust, including coming together in ceremony, practising humility and becoming personally and emotionally invested in each other's lives. We also prioritize time, effort and flexibility to actively work on our relationships. To make effective and beneficial change within Indigenous health research compels reframing western perspectives and overcoming long-standing institutional barriers, such that enduring and trusting relationships are the focus and not a means to an end.

Wîcohkamakew ("S/he Helps Someone"): A Qualitative Description of Experiences with a Community-derived Elders Mentoring Program for Indigenous Parents-to-be.

BACKGROUND: Responding to concerns about perinatal health risks and adverse outcomes, we established a community-based participatory research (CBPR) partnership between a Nêhiyawi (Cree) community and university-based researchers. We designed and implemented a community-derived Elders Mentoring Program (EMP) to provide additional support for pregnant women and their partners. Our objective was to understand the collective experiences of those involved in the Program. METHODS: We conducted a qualitative description with the principles of CBPR as an overarching framework. We carried out 14 qualitative interviews with parents, perinatal clinic staff, and mentor Elders involved in the Program. We also used detailed notes from Community Advisory Committee (CAC) meetings as data. All qualitative data were analyzed with content analysis. RESULTS: The Program helped pregnant women and their partners by fostering enhanced and multi-generational support networks. It also improved cultural security within the clinical environment and learning among health care staff. A sense of intergenerational fulfillment and enjoyment among those involved was common and was underpinned by genuine, collaborative relationships. CONCLUSIONS: A community-derived prenatal EMP, designed in partnership with those who have intimate knowledge of the community, is a major step toward ensuring multi-generational and culturally secure care in pregnancy for women and families.

Menopause experience in First Nations women and initiatives for menopause symptom awareness; a community-based participatory research approach.

BACKGROUND: Little research has been conducted about menopause in First Nations women. In response to the wishes of Cree women living in Maskwacis, Alberta, to start a dialogue on menopause, we undertook community-based participatory research (CBPR) to explore menopause experience and raise awareness of menopause symptoms in the community. METHODS: The research adhered to the principles of Ownership, Control, Access and Possession (OCAP™) and was guided by the interest of the participating women. Local women (target age 40-65 years) were invited to participate in workshops using word-of-mouth and community posters in health centers. Five research workshops were held in community settings, attended by experienced women's health researchers and consenting women. The participants guided the informal discussions. They also completed questionnaires which included menopause-related quality of life. The researchers used extensive hand-written field notes to record data; qualitative content analysis was applied to identify themes. Simple descriptive analysis was used for the questionnaire results. The findings were discussed at a community feedback session and laid the basis for further knowledge translation initiatives. RESULTS: The five workshops included a total of 37, mostly post-menopausal women with 6-11 women/workshop. The main discussion themes were: "experiences of menopause symptoms" including their impact on quality of life; "menopause knowledge prior to their own experience" with most women feeling that they had insufficient information before menopause; "menopause symptom management" which mainly included practical strategies; "impact of menopause on family members" which was of prime concern with uncontrollable mood changes affecting the whole family and sometimes causing matrimonial disharmony. Questionnaire responses corroborated the workshop discussions. Knowledge translation of the research findings produced two information pamphlets specifically for the Maskwacis community: one for husband/partner, the other for women and family members. These pamphlets have been distributed in all areas of the community. CONCLUSION: This CBPR project addressed a topic identified by the community as being important. Community members developed informative pamphlets in response to the women's concern of lack of understanding for menopause symptoms among families. This simple solution has been widely accepted by community members, opening the possibility of wider discussion about menopause.

Explaining the variability in cardiovascular risk factors among First Nations communities in Canada: a population-based study.

BACKGROUND: Historical, colonial, and racist policies continue to influence the health of Indigenous people, and they continue to have higher rates of chronic diseases and reduced life expectancy compared with non-Indigenous people. We determined factors accounting for variations in cardiovascular risk factors among First Nations communities in Canada. METHODS: Men and women (n=1302) aged 18 years or older from eight First Nations communities participated in a population-based study. Questionnaires, physical measures, blood samples, MRI of preclinical vascular disease, and community audits were collected. In this cross-sectional analysis, the main outcome was the INTERHEART risk score, a measure of cardiovascular risk factor burden. A multivariable model was developed to explain the variations in INTERHEART risk score among communities. The secondary outcome was MRI-detected carotid wall volume, a measure of subclinical atherosclerosis. FINDINGS: The mean INTERHEART risk score of all communities was 17·2 (SE 0·2), and more than 85% of individuals had a risk score in the moderate to high risk range. Subclinical atherosclerosis increased significantly across risk score categories (p<0·0001). Socioeconomic advantage (-1·4 score, 95% CI -2·5 to -0·3; p=0·01), trust between neighbours (-0·7, -1·2 to -0·3; p=0·003), higher education level (-1·9, -2·9 to -0·8, p<0·001), and higher social support (-1·1, -2·0 to -0·2; p=0·02) were independently associated with a lower INTERHEART risk score; difficulty accessing routine health care (2·2, 0·3 to 4·1, p=0·02), taking prescription medication (3·5, 2·8 to 4·3; p<0·001), and inability to afford prescription medications (1·5, 0·5 to 2·6; p=0·003) were associated with a higher INTERHEART risk score. Collectively, these factors explained 28% variation in the cardiac risk score among communities. Communities with higher socioeconomic advantage and greater trust, and individuals with higher education and social support, had a lower INTERHEART risk score. Communities with difficulty accessing health care, and individuals taking or unable to afford prescription medications, had a higher INTERHEART risk score. INTERPRETATION: Cardiac risk factors are lower in communities with high socioeconomic advantage, greater trust, social support and educational opportunities, and higher where it is difficult to access health care or afford prescription medications. Strategies to optimise the protective factors and reduce barriers to health care in First Nations communities might contribute to improved health and wellbeing. FUNDING: Heart and Stroke Foundation of Canada, Canadian Partnership Against Cancer, Canadian Institutes for Health Research.

Peyakohewamak-Needs of Involved Nehiyaw (Cree) Fathers Supporting Their Partners During Pregnancy: Findings From the ENRICH Study.

We sought to understand the needs of involved Nehiyaw (Cree) fathers who supported their partners during pregnancy. We used qualitative description and a community-based participatory research approach. We carried out in-depth semi-structured interviews with six Nehiyaw fathers. Four also participated in photovoice and follow-up interviews. All data were content analyzed qualitatively. Fathers felt they had to support their partners and overcome challenges resulting from intergenerational colonial impacts (residential schools particularly) by reclaiming their roles and acknowledging the pregnancy as a positive change. Providing support was possible through their own strong support system stemming from family, faith, culture, and a stable upbringing with positive male role models and intact Nehiyaw kinships. Perinatal programming did little to include fathers. Attempts to improve perinatal care and outcomes should allow more inclusion of and support for Indigenous fathers through genuinely incorporating into care traditional culture and Elders, families, flexibility, cultural understanding, and reconciliation.

Canadian Alliance for Healthy Hearts and Minds: First Nations Cohort Study Rationale and Design.

BACKGROUND: This is the first national indigenous cohort study in which a common, in-depth protocol with a common set of objectives has been adopted by several indigenous communities across Canada. OBJECTIVES: The overarching objective of the Canadian Alliance for Healthy Hearts and Minds (CAHHM) cohort is to investigate how the community-level environment is associated with individual health behaviors and the presence and progression of chronic disease risk factors and chronic diseases such as cardiovascular disease (CVD) and cancer. METHODS: CAHHM aims to recruit approximately 2,000 First Nations indigenous individuals from up to nine communities across Canada and have participants complete questionnaires, blood collection, physical measurements, cognitive assessments, and magnetic resonance imaging (MRI). RESULTS: Through individual- and community-level data collection, we will develop an understanding of the specific role of the socioenvironmental, biological, and contextual factors have on the development of chronic disease risk factors and chronic diseases. CONCLUSIONS: Information collected in the indigenous cohort will be used to assist communities to develop local management strategies for chronic disease, and can be used collectively to understand the contextual, environmental, socioeconomic, and biological determinants of differences in health status in harmony with First Nations beliefs and reality.

Kikiskawâwasow - prenatal healthcare provider perceptions of effective care for First Nations women: an ethnographic community-based participatory research study.

BACKGROUND: Pregnant Indigenous women suffer a disproportionate burden of risk and adverse outcomes relative to non-Indigenous women. Although there has been a call for improved prenatal care, examples are scarce. Therefore, we explored the characteristics of effective care with First Nations women from the perspective of prenatal healthcare providers (HCPs). METHODS: We conducted an ethnographic community-based participatory research study in collaboration with a large Cree First Nations community in Alberta, Canada. We carried out semi-structured interviews with 12 prenatal healthcare providers (HCPs) that were recorded, transcribed, and subjected to qualitative content analysis. RESULTS: According to the participants, relationships and trust, cultural understanding, and context-specific care were key features of effective prenatal care and challenge the typical healthcare model. HCPs that are able to foster sincere, non-judgmental, and enjoyable interactions with patients may be more effective in treating pregnant First Nations women, and better able to express empathy and understanding. Ongoing HCP cultural understanding specific to the community served is crucial to trusting relationships, and arises from real experiences and learning from patients over and above relying only on formal cultural sensitivity training. Consequently, HCPs report being better able to adapt a more flexible, all-inclusive, and accessible approach that meets specific needs of patients. CONCLUSIONS: Aligned with the recommendations of the Truth and Reconciliation Commission of Canada, improving prenatal care for First Nations women needs to allow for genuine relationship building with patients, with enhanced and authentic cultural understanding by HCPs, and care approaches tailored to women's needs, culture, and context.

High Frequency of Pre-Existing Type 2 Diabetes in a Series of Pregnant Women Referred for "Gestational Diabetes" in a Large Canadian Indigenous Community.

We examined the referral processes and true diagnostic classifications for diabetes complicating pregnancy in a series of 62 pregnant women consecutively referred to a diabetes education and treatment centre in a large Indigenous community in Alberta, Canada. The referrals were made over a 5-year period (2010 to 2015). The main findings of this analysis were the high frequency (38.7%) of pre-existing type 2 diabetes and previously undiagnosed or unrecognized overt diabetes and the deficiencies in early testing and recognition.

Cultural continuity, traditional Indigenous language, and diabetes in Alberta First Nations: a mixed methods study.

INTRODUCTION: We used an exploratory sequential mixed methods approach to study the association between cultural continuity, self-determination, and diabetes prevalence in First Nations in Alberta, Canada. METHODS: We conducted a qualitative description where we interviewed 10 Cree and Blackfoot leaders (members of Chief and Council) from across the province to understand cultural continuity, self-determination, and their relationship to health and diabetes, in the Alberta First Nations context. Based on the qualitative findings, we then conducted a cross-sectional analysis using provincial administrative data and publically available data for 31 First Nations communities to quantitatively examine any relationship between cultural continuity and diabetes prevalence. RESULTS: Cultural continuity, or "being who we are", is foundational to health in successful First Nations. Self-determination, or "being a self-sufficient Nation", stems from cultural continuity and is seriously compromised in today's Alberta Cree and Blackfoot Nations. Unfortunately, First Nations are in a continuous struggle with government policy. The intergenerational effects of colonization continue to impact the culture, which undermines the sense of self-determination, and contributes to diabetes and ill health. Crude diabetes prevalence varied dramatically among First Nations with values as low as 1.2% and as high as 18.3%. Those First Nations that appeared to have more cultural continuity (measured by traditional Indigenous language knowledge) had significantly lower diabetes prevalence after adjustment for socio-economic factors (p =0.007). CONCLUSIONS: First Nations that have been better able to preserve their culture may be relatively protected from diabetes.

Diabetes in pregnancy among First Nations women.

We conducted a focused ethnography with 12 First Nations women who had had diabetes in pregnancy to understand their real-life experiences and find ways to improve care for those with diabetes in pregnancy. We carried out unstructured interviews that were recorded, transcribed, and subject to qualitative content analysis. The experience of diabetes in pregnancy is one wrought with difficulties but balanced to some degree by positive lifestyle changes. Having a strong support system (family, health care, cultural/community, and internal support) and the necessary resources (primarily awareness/education) allows women to take some control of their health. Efforts to improve pregnancy care for First Nations women should take a more patient-centered care approach and strive to enhance the support systems of these women, increase their sense of autonomy, and raise awareness of diabetes in pregnancy and its accompanying challenges.

Diabetes in pregnancy among First Nations women in Alberta, Canada: a retrospective analysis.

BACKGROUND: In addition to increasing the risk of adverse birth outcomes, diabetes in pregnancy is thought to be an important driver of the epidemic of type 2 diabetes affecting Canada's First Nations population. The relative contributions of gestational diabetes mellitus (GDM) and pre-existing diabetes are not well understood. We generated a comprehensive epidemiological profile of diabetes in pregnancy over a 10-year period among the First Nations population of Alberta, Canada. METHODS: De-identified administrative data for 427,058 delivery records were obtained for the years 2000-2009. Pregnancy risk factors and delivery outcomes were described and compared by ethnicity (First Nations vs. non-First Nations) and diabetes status. Age-adjusted prevalence values for GDM and pre-existing diabetes were calculated and were compared by ethnicity. Longitudinal changes over time were also examined. Predictors were explored using logistic regression analysis. RESULTS: First Nations women had more antenatal risk factors and adverse infant outcomes that were compounded by diabetes. First Nations descent was an independent predictor of diabetes in pregnancy (p < 0.001). GDM prevalence was significantly higher among First Nations (6.1%) compared to non-First Nations women (3.8%; p < 0.001), but prevalence values increased significantly over time only in non-First Nations women (4.5 average annual percent change; p < 0.05). The prevalence of pre-existing diabetes was stable over time in both groups, but First Nations women experienced a 2.5-fold higher overall prevalence compared with non-First Nations women (1.5% vs. 0.6%, respectively; p < 0.001). CONCLUSIONS: Although First Nations women experience a higher overall prevalence of diabetes in pregnancy, the lack of increase in the prevalence over time is encouraging. However, because high-risk pregnancies and poor outcomes are more common among First Nations women, particularly those with diabetes, strategies to improve perinatal care must be implemented.

Increasing rates of diabetes amongst status Aboriginal youth in Alberta, Canada.

OBJECTIVES: To track and compare trends in diabetes rates from 1995 to 2007 for Status Aboriginal and general population youth. STUDY DESIGN: Longitudinal observational research study (quantitative) using provincial administrative data. METHODS: De-identified data was obtained from Alberta Health and Wellness administrative databases for Status Aboriginal (First Nations and Inuit people with Treaty status) and general population youth (<20 years). Diabetes cases were identified using the National Diabetes Surveillance System algorithm. Crude annual diabetes prevalence and incidence rates were calculated. The likelihood of being a prevalent case and incident case of diabetes for the 2 populations was compared for the year 2007. Average Annual Percent Changes (AAPC) in prevalence and incidence from 1995 to 2007 were determined and compared between the 2 groups to examine trends over time. RESULTS: While the prevalence of diabetes was higher in the general population in 1995, by 2007 there were no between group differences, reflected in the significantly higher AAPC of 6.98 for Status Aboriginal youth. Status Aboriginal males had a lower diabetes risk in 1995 compared with females, and experienced a greater increase in prevalence over the 13 years (AAPC 9.18) so that by 2007 their rates were equivalent to those of the females. Differences in diabetes incidence trends were only observed among male youth, where increases in incidence were greater for Status Aboriginal (AAPC 11.65) compared to general population males (AAPC 4.62) (p = 0.03). CONCLUSION: Youth-onset diabetes is an increasing problem in Alberta, especially among young Status Aboriginal males.

Recent epidemiologic trends of diabetes mellitus among status Aboriginal adults.

BACKGROUND: Little is known about longitudinal trends in diabetes mellitus among Aboriginal people in Canada. We compared the incidence and prevalence of diabetes, and its impact on mortality, among status Aboriginal adults and adults in the general population between 1995 and 2007. METHODS: We examined de-identified data from Alberta Health and Wellness administrative databases for status Aboriginal people (First Nations and Inuit people with treaty status) and members of the general public aged 20 years and older who received a diagnosis of diabetes mellitus from Apr. 1, 1995, to Mar. 31, 2007. We calculated the incidence and prevalence of diabetes and mortality rate ratios by sex and ethnicity in 2007. We examined the average relative changes per year for longitudinal trends. RESULTS: The average relative change per year in the prevalence of diabetes showed a smaller increase over time in the Aboriginal population than in the general population (2.39 v. 4.09, p < 0.001). A similar finding was observed for the incidence of diabetes. In the Aboriginal population, we found that the increase in the average relative change per year was greater among men than among women (3.13 v. 1.88 for prevalence, p < 0.001; 2.60 v. 0.02 for incidence, p = 0.001). Mortality among people with diabetes decreased over time to a similar extent in both populations. Among people without diabetes, mortality decreased in the general population but was unchanged in the Aboriginal population (-1.92 v. 0.11, p = 0.04). Overall, mortality was higher in the Aboriginal population than in the general population regardless of diabetes status. INTERPRETATION: The increases in the incidence and prevalence of diabetes over the study period appeared to be slower in the status Aboriginal population than in the general population in Alberta, although the overall rates were higher in the Aboriginal population. Mortality decreased among people with diabetes in both populations but was higher overall in the Aboriginal population regardless of diabetes status.

Emerging longitudinal trends in health indicators for rural residents participating in a diabetes and cardiovascular screening program in northern Alberta, Canada.

Background. Geographic isolation, poverty, and loss of culture/tradition contribute to "epidemic" rates of diabetes amongst indigenous Canadians. The Mobile Diabetes Screening Initiative travels to rural indigenous and other remote communities in Alberta to screen for diabetes and cardiovascular risk. We sought to examine risk factors longitudinally. Methods. Clinical and anthropometric measurements were undertaken for 809 adults (aged 20-91) between November 2003 and December 2009. For those who had more than one MDSi visit, trend estimates (actual changes) were calculated for body mass index (BMI), weight, waist circumference, hemoglobin A1c (A1c), total cholesterol, and blood pressure. Results. Among those without diabetes (N = 629), BMI and weight increased (P < .01) and blood pressure decreased (P < .05). For those with diabetes (N = 180), significant improvements (P < .05) were observed for all indicators except waist circumference. Conclusion. Improvements observed suggest that MDSi's model may effectively mediate some barriers and support subjects in managing their health.