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East Hawai'i and its local hospital face unsustainable cost and health care utilization trends. The medical and social service organizations in this region, which includes the city of Hilo and its surrounding area on Hawai'i Island, previously worked in silos regarding coordination of patient care. To mitigate these factors, community initiatives have been implemented to address the needs of high-cost, high-need (HCHN) patients. Can community initiatives that better coordinate medical and social services to directly address social determinants of health improve quality of care and reduce utilization of emergency department (ED) and inpatient (IP) resources? Respected community leaders and diverse stakeholders in East Hawai'i have organized a community to improve health while lowering costs, influence legislative policy, and work collaboratively with the largest health plan in Hawai'i and the local hospital to change health care delivery. A population of patients with high cost, utilization, and disease burden was identified. A model of care was developed with 2 centers of excellence, providing care coordination across medical and social services. Community health workers (CHWs) were added to help patients navigate the system, comply with treatment plans, and request exception funding. A community forum for medical and social services has been established and an online referral system improves efficiency and accountability. Finally, a community quality assurance (QA) committee is being put into place to drive systemic improvements. The community approach adopted in East Hawai'i holds great promise to realize structural changes to healthcare. While not yet fully implemented, anecdotal data suggest that this program is reducing ED and IP utilization and effectively addressing social determinants of health.

Abstract
This study investigates gender differences in housing, socioeconomic status, and self-reported health status. The analysis focuses on the social and economic dimensions of housing, such as demand, control, material aspects (affordability, type of dwelling) and meaningful aspects (pride in dwelling, home as a refuge) of everyday life in the domestic environment. A random sample, crosssectional telephone survey was administered in the city of Vancouver, Canada in June 1999 (n = 650). Survey items included measures of material and meaningful dimensions of housing, housing satisfaction, and standard measures of socioeconomic status and social support. The main outcome measure was self-reported health (excellent/very good/good vs. fair/poor). A three-stage analysis provides an overall picture of the sample characteristics for male and female respondents, detects significant relations between individual and housing characteristics and self-rated health status, and investigates male-female differences in the factors associated with fair/poor self-rated health. In multivariate analyses, a small number of socioeconomic dimensions of housing were associated with self-rated health status for women. For men, only one attribute of housing was associated with self-rated health: crowding was positively related to poor health, contradicting expectations and the findings for women. The self-reported strain of housework was unrelated to self-rated health for men, bot strongly related to poor health for women. For men and women, satisfaction with social activities increased the likelihood of reporting better health. Future research should focus on the health effects of geodered differences in domestic and paid work, and on home and family roles and the interaction among gender, household crowding, and health.

IntroductionGlobally, the ways that Indigenous data are collected, used, stored, shared, and analyzed are advancing through Indigenous data governance movements. However, these discussions do not always include the increasingly sensitive nature of linking Indigenous population health (IPH) data. During the International Population Data Linkage Network Conference in September of 2018, Indigenous people from three countries (Canada, New Zealand, and the United States) gathered and set the tone for discussions around Indigenous-driven IPH data linkage.
ObjectivesCentering IPH data linkage and research priorities at the conference led to budding discussions from diverse Indigenous populations to share and build on current IPH data linkage themes. This paper provides a braided summary of those discussions which resulted in the SEEDS principles for use when linking IPH data.
MethodsDuring the Conference, two sessions and a keynote were Indigenous-led and hosted by international collaborators that focused on regional perspectives on IPH data linkage. A retrospective document analysis of notes, discussions, and artistic contributions gathered from the conference resulted in a summary of shared common approaches to the linkage of IPH data.
ResultsThe SEEDS Principles emerge as collective report that outlines a living and expanding set of guiding principles that: 1) prioritizes Indigenous Peoples' right to Self-determination; 2) makes space for Indigenous Peoples to Exercise sovereignty; 3) adheres to Ethical protocols; 4) acknowledges and respects Data stewardship and governance, and; 5) works to Support reconciliation between Indigenous nations and settler states.
ConclusionEach of the elements of SEEDS need to be enacted together to create a positive data linkage environment. When implemented together, the SEEDS Principles can lead to more meaningful research and improved Indigenous data governance. The mindful implementation of SEEDS could lead to better measurements of health progress through linkages that are critical to enhancing health care policy and improving health and wellness outcomes for Indigenous nations.

Background The importance of engaging the community in healthcare research and planning has been widely recognized. Currently however, there is a limited focus on older adults, Canada's fastest growing segment of the population and biggest users of the healthcare system. Objective This project aimed to develop an understanding of engagement of older adults and their caregivers in healthcare research and planning. Method A realist synthesis was conducted of the available knowledge on engagement in healthcare research and planning. The search methodology was informed by a framework for realist syntheses following five phases, including consultations with older adults. The synthesis included theoretical frameworks, and both peer-reviewed and grey literature. Results The search generated 15,683 articles, with 562 focusing on healthcare research and planning. The review lead to the development of a framework to engage older adults and their caregivers in healthcare research and planning. The 5 stages environment, plan, establish, build, and transition are accompanied with example context, mechanism, and outcomes to guide the use of this framework. Conclusion We have identified a framework that promotes meaningful engagement of older adults and their caregivers. We are continuing to collaborate with our community partners to further develop and evaluate engagement strategies that align with the presented framework. ; This work was supported by a Knowledge Synthesis Grant from the Technology Evaluation for the Elderly Network (TVN), grant # KS2013-08, which is funded by the Government of Canada's Networks of Centres of Excellence (NCE) Program.

ABSTRACTObjectiveEfforts to enable persons with dementia to remain at home longer, and to reduce use of costly acute care resources, are at the forefront of policy agendas internationally. Foundational to planning appropriate health system supports is the ongoing, comparable and accurate estimation of the prevalence and incidence of dementia across regions, as well as associated patterns of health services use and cost. Our objective was to explore emerging approaches to using population data in dementia research and demonstrate the policy contribution of the resulting new knowledge.
ApproachUsing population-based health administrative data and an algorithm that was validated using electronic medical records, we developed a series of repeated, cross-sectional cohort studies to examine trends in dementia prevalence, incidence and publicly-funded health service use and costs between 2004/05 and 2013/14 among adults aged 65 years and older in Ontario, Canada. Trends in yearly rates of health service use were assessed using regression models for serially correlated data and compared to a 1:1 matched control group based on age, sex, geographic region and comorbidity level.
ResultsOver time, age- and sex-adjusted prevalence of dementia increased by 18.2% (from 63.0 to 74.5 per 1,000 persons; p-value < 0.001) and age- and sex-adjusted incidence decreased slightly (from 18.2 to 17.0 per 1,000 persons; p-value = 0.05). Community-dwelling persons with dementia were more likely than matched controls to be placed in long-term care (11.8% vs. 1.5% in 2013; p<0.001) and use home care (45.8% vs 23.2%; p<0.001) but equally likely to visit family physicians (93.9% vs. 94.8% in 2013) and specialists (87.1% vs. 89.4%). Median costs associated with one year of health system use were $19,468 (interquartile range (IQR) $4,490 to $47,726) for prevalent cases in 2012/13 and $16,549 (IQR $5,070 to $47,899) for incident cases. Long-term care and hospital care accounted for the largest portion of total costs in both groups.
ConclusionThe prevalence of dementia has increased in Ontario, Canada over time and, given slightly declining incidence rates, is likely attributable to improved survival. Surveillance of dementia with health administrative data is a cost-effective tool for describing and monitoring trends in incidence and prevalence over time, and for supporting health system capacity planning. This comparative information is critical to understanding the impact of policy decisions designed to address dementia-related health care needs at a population level.

IntroductionIndigenous people worldwide are overrepresented and adversely effected by diabetes. Peripheral arterial disease and amputation are among the most feared complications of diabetes, leading to profound impacts on patients' quality of life. This study linked population-level healthcare data to assess the risk of peripheral arterial disease among First Nations people in Ontario with diabetes.
Objectives and ApproachWe linked individual-level population-based healthcare administrative datasets with the Indian Register. The latter provides information on all registered or Status First Nations people in Canada. We compared First Nations people with diabetes with other people in Ontario with diabetes . Age and sex-adjusted rates peripheral revascularization procedures and lower-extremity amputations were calculated for each 12-month period from April 1, 1995, to March 31, 2015. Mortality among those with amputation was determined.
ResultsFirst Nations people received revascularization procedures at a comparable rate to other people in Ontario. However, they had lower-extremity amputations at 3- to 5-times the frequency of other Ontario residents. First Nations people had increased mortality after lower-extremity amputation (adjusted hazard ratio 1.15, 95% confidence interval 1.05 to 1.26), with median survival of only 3.5 years.
Conclusion / ImplicationsFirst Nations people with diabetes in Ontario had a comparable rate of revascularization but a markedly increased risk for lower-extremity amputation compared to other people in Ontario. This discordance suggests that peripheral arterial disease may be underdiagnosed or undertreated among First Nations people in Ontario, and demonstrates an important health inequity faced by First Nations people.

Objective and ApproachUnderstanding vaccine hesitancy among distinct communities is crucial to ensuring equitable uptake of vaccination. The objective was to examine the influence of psychological antecedents of vaccine uptake, known as the "5Cs", on COVID-19 vaccination among Métis Nation of Ontario (MNO) citizens. The Métis people are one of three Indigenous peoples in Canada. A population-based online survey was implemented by the MNO, including the short version of the "5C" (confidence, complacency, constraint, calculation, collective responsibility) psychological antecedents of vaccination scale. Census sampling achieved a 39% response rate and respondents were linked to the COVID-19 vaccine database (COVAX) in Ontario (n=4,012). Analyses included logistic regression models (adjusted for sociodemographics) and exploratory latent class analyses.
ResultsIn logistic regression models, MNO citizens who were less confident that COVID-19 vaccines were safe (OR=0.04; 95% CI=0.03-0.06) and did not agree vaccination was a collective action to prevent the spread of disease (OR=0.11, 95% CI: 0.07-0.17) had lower odds of being vaccinated. MNO citizens who disagreed the risk of COVID-19 was small (OR=14.87, 95% CI: 9.99-22.13) had a higher odds of being vaccinated. Vaccine hesitancy profiles with (i) lower confidence in availability/safety of COVID-19 vaccines, (ii) lower perceptions about severity of COVID-19 and (iii) higher everyday life constraints/stressors were associated with lower vaccination rates (males, OR: 4.69; CI: 3.18–6.92; females, OR: 4.77, CI: 3.03–7.51) in latent class analyses.
Conclusions and ImplicationsMétis-specific analyses enabled a community-driven response, resulting in low vaccine hesitancy and high uptake.

IntroductionThe 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.
ObjectivesTo describe the linkage of the IR database to the Ontario Registered Persons Database (RPDB) within the context of Indigenous data sovereignty principles.
MethodsDeterministic 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.
ResultsOverall, 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.
Conclusions 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.

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

ObjectiveThe James and Hudson Bay Region, consisting of six remote Indigenous communities, have experienced barriers accessing regional health data. To inform local health planning, the Minomathasowin Healthy Living department in the Weeneebayko Area Health Authority (WAHA), ICES and Laurentian University developed a Collaboration, to co-create enhanced Indigenous data stewardship.
ApproachThe Collaboration combines expertise in Indigenous knowledge with quantitative and qualitative analyses to develop relevant data intended for public dissemination. Through a community-driven and strength-based approach, local knowledge guides the direction of the research. Indigenous data governance principles are applied, supporting local data ownership, and supplementing local knowledge on population health issues. This ensures the development of research projects that have meaningful impacts. The Collaboration is part of a larger partnership and is continually engaging local Indigenous stakeholders. Protocols ensure research is done in a manner that respects and reflects community well-being and is undertaken in a good way.
ResultsThe Collaboration is an ongoing, living initiative and has enabled WAHA to become a local hub for Indigenous stakeholders to obtain health data for their respective communities. It adheres to the importance of following protocols within Indigenous communities, acknowledging qualitative research activities can be undertaken at the community-level. Projects from this Collaboration identify and prioritize the most pressing health issues impacting the Region including mental health and addictions, COVID-19 surveillance, hospitalization trends, and the prevalence of lupus. The success of the Collaboration is demonstrated through increased requests from the Region to WAHA for support on health planning and decision-making. Data access barriers in the Region are being addressed through the combined expertise of the Collaboration and local knowledge. This approach is enhancing Indigenous data stewardship.
ConclusionsThe Collaboration advocates for Indigenous-led and -driven research that recognizes the value of combining local knowledge with quantitative and qualitative data analyses to put communities first. The Collaboration supports equitable data access and the development of relevant research projects. This is leading to sustainable, impactful health planning for the Region.

Administrative health data is recognized for its value for conducting population-based research that has contributed to numerous improvements in health. In Canada, each province and territory is responsible for administering its own publicly funded health care program, which has resulted in multiple sets of administrative health data. Challenges to using these data within each of these jurisdictions have been identified, which are further amplified when the research involves more than one jurisdiction. The benefits to conducting multi-jurisdictional studies has been recognized by the Canadian Institutes of Health Research (CIHR), which issued a call in 2017 for proposals that address the challenges. The grant led to the creation of Health Data Research Network Canada (HDRN), with a vision is to establish a distributed network that facilitates and accelerates multi-jurisdictional research in Canada. HDRN received funding for seven years that will be used to support the objectives and activities of an initiative called the Strategy for Patient-Oriented Research Canadian Data Platform (SPOR-CDP). In this paper, we describe the challenges that researchers face while using, or considering using, administrative health data to conduct multi-jurisdictional research and the various ways that the SPOR-CDP will attempt to address them. Our objective is to assist other groups facing similar challenges associated with undertaking multi-jurisdictional research.

Topic: Perspectives on Linkage Involving Indigenous dataIndigenous populations across the globe are reaffirming their sovereignty rights in the collection and use of Indigenous data. The Indigenous data sovereignty movement has been widely influential and can be unsettling for those who routinely use population-level linked data that include Indigenous identifiers. Ethical policies that stipulate community engagement for access, interpretation and dissemination of Indigenous data create an enabling environment through the critical process of negotiating and navigating data access in partnership with communities. This session will be designed to create space for leading Indigenous voices to set the tone for the discussion around Indigenous population data linkage.
Objectives:

To provide participants with an opportunity to build on the themes of Indigenous Data Sovereignty presented in the keynote session as they apply to diverse Indigenous populations.
To explore approaches to the linkage of Indigenous-identified population data across four countries, including First Nations in three Canadian regions.
To share practical applications of Indigenous data sovereignty on data linkage and analysis and discussion.
To center Indigenous-driven data linkage and research.

Facilitator:Jennifer Walker. Canada Research Chair in Indigenous Health, Laurentian University and Indigenous Lead, Institute for Clinical Evaluative Sciences.
Collaborators:

Alberta: Bonnie Healy, Tina Apsassin, Chyloe Healy and William Wadsworth (Alberta First Nations Information Governance Centre)
Ontario: Carmen R. Jones (Chiefs of Ontario) and Jennifer Walker (Institute for Clinical Evaluative Sciences)
British Columbia: Jeff Reading (Providence Health Centre) and Laurel Lemchuk-Favel (First Nations Health Authority)
Australia: Raymond Lovett (Australian National University)
Aotearoa / New Zealand: Donna Cormack (University of Otago)
United States: Stephanie Rainie and Desi Rodriguez-Lonebear (University of Arizona)

Session format: 90 minutesCollaborators will participate in a round-table introduction to the work they are doing. Collaborators will discuss the principles underlying their approaches to Indigenous data linkage as well as practical and concrete solutions to challenges. Questions to guide the discussion will be pre-determined by consensus among the collaborators and the themes will include: data governance, community engagement, Indigenous-led linkage and analysis of data, and decision-making regarding access to linked data. Other participants attending the session will be encouraged to listen and will have an opportunity to engage in the discussion and ask questions.
Intended output or outcome:The key outcome of the session will be twofold. First, those actively working with Indigenous linked data will have an opportunity for an in-depth and meaningful dialogue about their work, which will promote international collaboration and sharing of ideas. Second, those with less experience and knowledge of the principles of Indigenous data sovereignty and their practical application will have an opportunity to listen to Indigenous people who are advancing the integration of Indigenous ways of knowing into data linkage and analysis.
The output of the session will be a summary paper highlighting both the diversity and commonalities of approaches to Indigenous data linkage internationally. Areas where consensus exists, opportunities for collaboration, and challenges will be highlighted.

Concerns about secondary use of data and limited opportunities for benefit-sharing have focused attention on the tension that Indigenous communities feel between (1) protecting Indigenous rights and interests in Indigenous data (including traditional knowledges) and (2) supporting open data, machine learning, broad data sharing, and big data initiatives. The International Indigenous Data Sovereignty Interest Group (within the Research Data Alliance) is a network of nation-state based Indigenous data sovereignty networks and individuals that developed the 'CARE Principles for Indigenous Data Governance' (Collective Benefit, Authority to Control, Responsibility, and Ethics) in consultation with Indigenous Peoples, scholars, non-profit organizations, and governments. The CARE Principles are people– and purpose-oriented, reflecting the crucial role of data in advancing innovation, governance, and self-determination among Indigenous Peoples. The Principles complement the existing data-centric approach represented in the 'FAIR Guiding Principles for scientific data management and stewardship' (Findable, Accessible, Interoperable, Reusable). The CARE Principles build upon earlier work by the Te Mana Raraunga Maori Data Sovereignty Network, US Indigenous Data Sovereignty Network, Maiam nayri Wingara Aboriginal and Torres Strait Islander Data Sovereignty Collective, and numerous Indigenous Peoples, nations, and communities. The goal is that stewards and other users of Indigenous data will 'Be FAIR and CARE.' In this first formal publication of the CARE Principles, we articulate their rationale, describe their relation to the FAIR Principles, and present examples of their application.