Jennifer Walker

Indigenous health data and the path to healing

2022 www.thelancet.com Vol 390 November 4, 2017 The health disadvantages of Indigenous peoples around the world have their roots in colonisation and discrimination and are related to a loss of autonomy over lands and culture. This history has profoundly affected social determinants of health, such as poverty and marginalisation, and contributed to higher rates of communicable and non-communicable diseases in Indigenous people, and life expectancies that are typically 5 years or more lower than in non-Indigenous populations. Despite persistent health inequities, Indigenous peoples are determining the path to healing their communities. Reports often portray Indigenous health as only a problem and overemphasise negative findings, rather than highlight progress that has been made in certain areas (eg, smoking rates, cardiovascular deaths, and vaccine coverage). To document progress, Indigenous communities need accurate data to measure determinants of health, access to health services, and the burden of important diseases and their complications. But major gaps remain in the availability and adequacy of data on Indigenous health. Indigenous peoples have long claimed sovereignty over their culture and lands and are now making this claim over health data, believing this will empower communities and guide them in advocating for better health and health care. Article 24 of the United Nations Declaration on the Rights of Indigenous Peoples asserts the right to achieve the highest attainable health. However, it does not provide guidance on governance of the data that are needed to measure progress towards this goal. Greater efforts are needed to track the health of Indigenous peoples, and address concerns about the ways in which data are gathered and the political ends to which they might be used. The landscape of health data is changing with increasing access to diverse sources, including healthsystem encounters, health payment claims, disease registries, vital statistics, prescriptions, and community care services. The value of these routinely collected data is enhanced if they can be linked securely and anonymously at the level of the individual to create longitudinal records. In several countries, routinely collected data include Indigenous identifiers or can be linked to files that include this information. In Australia, the Commonwealth (federal government) has responsibility for primary health care through Medicare, and Indigenous identity can be registered when enrolling for coverage. However, enrolment in Medicare is incomplete, as is Indigenous self-identification. The linkage of Medicare to other administrative and registry data to investigate the health and care of Indigenous peoples first occurred in 2005 in Western Australia but has not progressed at the national level. By contrast, Aotearoa/New Zealand has had mandatory collection of ethnicity data, including Māori identity, since the 1990s. Ethnicity is collected as part of public health surveillance and surveys, and national and administrative data collections. Ethnicity data are used to address health inequities, inform health priorities, and monitor Treaty of Waitangi obligations to Māori. One initiative links de-identified individual-level data from health datasets with data from the census and other administrative Indigenous health data and the path to healing

Kidney Disease Among Registered Métis Citizens of Ontario: A Population-Based Cohort Study

Background: Indigenous peoples in Canada have higher rates of kidney disease than non-Indigenous Canadians. However, little is known about the risk of kidney disease specifically in the Métis population in Canada. Objective: To compare the prevalence of chronic kidney disease and incidence of acute kidney injury and end-stage kidney disease among registered Métis citizens in Ontario and a matched sample from the general Ontario population. Design: Population-based, retrospective cohort study using data from the Métis Nation of Ontario’s Citizenship Registry and administrative databases. Setting: Ontario, Canada; 2003-2013. Patients: Ontario residents ≥18 years. Measurements: Prevalence of chronic kidney disease and incidence of acute kidney injury and end-stage kidney disease. Secondary outcomes among patients hospitalized with acute kidney injury included non-recovery of kidney function and mortality within 1 year of discharge. Methods: Database codes and laboratory values were used to determine study outcomes. Métis citizens were matched (1:4) to Ontario residents on age, sex, and area of residence. The analysis included 12 229 registered Métis citizens and 48 916 adults from the general population. Results: We found the prevalence of chronic kidney disease was slightly higher among Métis citizens compared with the general population (3.1% vs 2.6%, P = 0.002). The incidence of acute kidney injury was 1.2 per 1000 person-years in both Métis citizens and the general population (P = 0.54). Of those hospitalized with acute kidney injury, outcomes were similar among Métis citizens and the general population except 1-year mortality, which was higher for Métis citizens (24.5% vs 15.3%, P = 0.03). The incidence of end-stage kidney disease did not differ between groups (<3.0 per 10 000 person-years, P = 0.73). Limitations: The Métis Nation of Ontario Citizenship Registry only captures about 20% of Métis people in Ontario. Administrative health care codes used to identify kidney disease are highly specific but have low sensitivity. Conclusions: Rates of kidney disease were similar or slightly higher for Métis citizens in Ontario compared with the matched general population.

Identifying and understanding the health and social care needs of older adults with multiple chronic conditions and their caregivers: a protocol for a scoping review

Introduction People are living longer; however, they are not necessarily experiencing good health and well-being as they age. Many older adults live with multiple chronic conditions (MCC), and complex health issues, which adversely affect their day-to-day functioning and overall quality of life. As a result, they frequently rely on the support of friend and/or family caregivers. Caregivers of older adults with MCC often face challenges to their own well-being and also require support. Currently, not enough is known about the health and social care needs of older adults with MCC and the needs of their caregivers or how best to identify and meet these needs. This study will examine and synthesise the literature on the needs of older adults with MCC and those of their caregivers, and identify gaps in evidence and directions for further research. Methods and analysis We will conduct a scoping review of the peer-reviewed and grey literature using the updated Arksey and O’Malley framework. The literature will be identified using a multidatabase and grey literature search strategy developed by a health sciences librarian. Papers, reports and other materials addressing the health and social care needs of older adults and their friend/family caregivers will be included. Search results will be screened, independently, by two reviewers, and data will be abstracted from included literature and charted in duplicate. Ethics and dissemination This scoping review does not require ethics approval. We anticipate that study findings will inform novel strategies for identifying and ascertaining the health and social care needs of older adults living with MCC and those of their caregivers. Working with knowledge-user members of our team, we will prepare materials and presentations to disseminate findings to relevant stakeholder and end-user groups at local, national and international levels. We will also publish our findings in a peer-reviewed journal.

Unlocking First Nations health information through data linkage

Abstract Introduction The importance of Indigenous data sovereignty and Indigenous-led research processes is increasingly being recognized in Canada and internationally. For First Nations in Ontario, Canada, access to routinely-collected demographic and health systems data is critical to planning and measuring health status and outcomes in their populations. Linkage of this data with the Indian Register (IR), under First Nations data governance, has unlocked data for use by First Nations organizations and communities. Objectives To describe the linkage of the IR database to the Ontario Registered Persons Database (RPDB) within the context of Indigenous data sovereignty principles. Methods Deterministic and probabilistic record linkage methods were used to link the IR to the RPDB. There is no established population of First Nations people living in Ontario with which we could establish a linkage rate. Accordingly, several approaches were taken to determine a denominator that would represent the total population of First Nations we would hope to link to the RPDB. Results Overall, 201,678 individuals in the national IR database matched to Ontario health records by way of the RPDB, of which 98,562 were female and 103,116 were male. Of those First Nations individuals linked to the RPDB, 90.2% (n=181,915) lived in Ontario when they first registered with IR, or were affiliated with an Ontario First Nation Community. The proportion of registered First Nations people linking to the RPDB improved across time, from 62.8% in the 1960s to 94.5% in 2012. Conclusion This linkage of the IR and RPDB has resulted in the creation of the largest First Nations health research study cohort in Canada. The linked data are being used by First Nations communities to answer questions that ultimately promote wellbeing, effective policy, and healing

Walking the Path Together: Indigenous Health Data at ICES

Indigenous data governance principles assert that Indigenous communities have a right to data that identifies their people or communities, and a right to determine the use of that data in ways that support Indigenous health and self-determination. Indigenous-driven use of the databases held at the Institute for Clinical Evaluative Sciences (ICES) has resulted in ongoing partnerships between ICES and diverse Indigenous organizations and communities. To respond to this emerging and complex landscape, ICES has established a team whose goal is to support the infrastructure for responding to community-initiated research priorities. ICES works closely with Indigenous partners to develop unique data governance agreements and supports processes, which ensure that ICES scientists must work with Indigenous organizations when conducting research that involves Indigenous peoples.