Research & Data Management

COO: Ontario First Nations Regional Health Survey Phase III

Episode 5

In episode 5, we will be speaking to Roseanne Sutherland and Thresea Adams from the Chiefs of Ontario about the First Nations Regional Health Survey. Together, we will discuss the importance of the Regional Health survey for the health and well-being of First Nations communities, how the data from the survey is used, and take a closer look at how communities are engaged for this survey.

[Embed Player]

Resources mentioned in this episode:

FNIGC: Surveys administered by FNIGC

Episode 6

Dr. Jennifer Walker from McMaster University and Dr. Sharmistha Mishra from the University of Toronto joined us for a two-episode feature to talk about the COVID-19 Scenario model. Over the course of these two episodes, we walked through the process of this project from conceptualization to the implementation and application of the model, and what First Nations data sovereignty means for modeling research. In Episode 7, we explored the data used for this project, as well as the more technical aspects of the model and what makes this model unique. We wrapped up this two-episode feature by reflecting on some lessons learned and how we can re-think math modelling in the future.

Resources mentioned in this episode:

Episode 7

Resources mentioned in this episode:

Episode 8

Episode 8 of the Voices of Sovereignty Podcast Series welcomed Gordon Peters. With over four decades of experience working with First Nations in both political and non-political capacities, Gord shares his experiences advancing First Nations Data Sovereignty and the importance of conducting research that respects First Nations’ culture and knowledge systems.

In this episode, he reflects on his advocacy for data sovereignty, providing examples of the harm caused by misusing First Nations data and highlighting areas where First Nations ways of knowing have not been meaningfully incorporated into research. He also shares insights from a past project that revealed how data collection practices failed to align with First Nations values, leading to long-term repercussions for future research.

Resources mentioned in this episode:

Voices of Sovereignty Podcast Series: Episode 9 | Infectious Questions : An Infectious Diseases Public Health Podcast

Episode 9

Episode 9 of the Voice of Sovereignty podcast series welcomes Diane Jacko from the Naandwechge-Gamig Wiikwemkoong Health Centre in Wiikwemkoong Unceded Territory (WUT). She shares insights on her community’s work surveying while upholding OCAP® principles.

We also speak with Michael McCormick, IT Supervisor for WUT, about his role in managing the community’s health data. Additionally, Michael Staruck, Director of Education for the Chiefs of Ontario, discusses his sector’s approach to working with education data and how it benefits First Nations education.

This episode highlights key successes in First Nations data sovereignty and governance, aiming to inspire other First Nations to recognize the power and importance of data.

Resources mentioned in this episode:

Episode 10

Episode 10 of the Voices of Sovereignty Podcast, we welcome Trevor Koostachin and Zachary Smith from the Chiefs of Ontario, who share their powerful journeys into the field of First Nations Data Sovereignty. Through personal stories and professional insights, they shed light on the transformative work being done within the Research and Data Management Sector at the Chiefs of Ontario.

Together, we explore the significance of capacity building in data governance and the exciting initiatives aimed at strengthening First Nations’ control over their data. This episode not only celebrates the achievements of First Nations leaders in data sovereignty, but it also serves as an inspiring call to action for others to embrace the critical role data plays in self-determination and nation-building.

Resources mentioned in this episode:

Episode 11

In the last episode of season 1, we invite Carmen Jones to reflect on discussions with podcast guests and highlights from the past year. Also joining us are Tracy Antone and Ryan McMahon, who share perspectives on the Chiefs of Ontario’s exciting 50-year anniversary, plans for the future of COO, and plans for season 2 of the Voices of Sovereignty podcast series!

Resources mentioned in this episode:

DOWNLOAD THE ROADMAP TO HEALTH RESEARCH

Data Governance

COO Data Governance Committee Application Form

Administrative Fee

*Please note that the Chiefs of Ontario (COO) First Nations Data Governance Committee (FNDGS) is not accepting applications at this time.*

Applications are subject to a fifteen hundred dollar ($1,500.00) administrative fee. Considerations will be made if the Administrative Fee presents a barrier. Cheque or Money Orders payable to the Chiefs of Ontario (RE: Access to First Nations Data Application Form). Please note: this fee does not include Analyst time.

The First Nations Data Governance Committee reviews proposals for Ontario-wide regional research and health surveillance projects that will access First Nations data.

The First Nations Data Governance Committee will receive projects/proposals twice per year. Deadlines are as follows:

1. April 15, each year and reviewed in May
2. October 15, each year and reviewed in November

If the 15th of the month falls on a weekend (Saturday or Sunday) then the application will be received the following Monday.

Applications should be post-dated, mailed on or before April 15 or October 15 and sent to:

Chair, First Nations Data Governance Committee
Chiefs of Ontario Office
468 Queen Street East, Suite 400
Toronto, ON M1G 1H5
Email: FNDGCA@coo.org
Fax: (416) 597-8365

The Chiefs of Ontario (COO) will approve the project, in principle, based upon the application. It is the responsibility of the applicant to ensure compliance with the representations and undertakings made within the proposal.

Please contact Zachary Smith, Associate Director, Research and Data Management, at zachary.smith@coo.org for an application form.

If there are any questions regarding your application or how to apply you can email or phone:

Chair, First Nations Data Governance Committee
Email: FNDGCA@coo.org
Phone: (416) 597-1266
Toll-Free Phone: (877) 517-6527

First Nations’ RIGC Project

First Nations’ Regional Information Governance Centre (RIGC) Project

Our Mandate
The national First Nations Data Governance Strategy was developed in response to mandates from the Assembly of First Nations (AFN) and prepared by the First Nations Information Governance Centre (FNIGC) in 2020. The Chiefs of Ontario’s Data Champion Team/Advisory Committee is now customizing this strategy to address regional priorities, needs, and schedules, as outlined in AOCC Resolution 21/27.

What is the First Nations in Ontario Regional Information Governance Centre (RIGC) Project?
This project will develop a tailored, Ontario-specific approach to the Regional Information Governance Centre. It will be designed for and led by First Nations, to support their ownership and access to data .

For example:
– First Nations have ownership of their data (e.g., Indian Residential School data; Where is it stored? Who has access?).
– Information collected belongs to the First Nation from which it originates.

This project focuses on addressing the unique needs and priorities of First Nations in Ontario.

“The First Nations Data Governance Strategy (FNDGS, or the Strategy) responds to a complex and evolving digital environment while providing a plausible incremental plan to achieve First Nations data sovereignty that is designed to ensure no First Nation is left behind.

It reflects priorities specific to establishing a network of fully functioning, interconnected data and statistical service centres, or Regional Information Governance Centres (RIGCs), and all of the capacities needed to best serve the data and statistical needs of First Nations.” fnigc.ca

Why is this needed?
In the past, data about First Nations people was collected and used without their permission or any benefit to them. The creation of a Regional Information Governance Centre in Ontario would provide opportunities for First Nations rights holders to enact Ownership, Control, Access and Possession (OCAP®) principles in relation to their data in ways that honour their cultural values and self-determination.

What is First Nations Data Sovereignty?
First Nations Data Sovereignty is about the right of First Nations peoples and communities to manage, own, create and leverage data about their people, lands, and resources. It is based on First Nations’ sovereign right to make their own decisions in alignment with their cultural values and vision of self-determination.

What is data?
The term ‘data’ in this context broadly encompasses all information about First Nations people, whether at the collective or individual level.

It includes historical and contemporary data, survey data, administrative data, and data from alternative sources, including data generated through research activities. This encompasses data about First Nations lands, resources and the environment, as well as “data about us” such as demographics, socio-economic, health information, housing, infrastructure, and other services, as well as “data from us” such as our languages, cultures, knowledge, and stories.

Importance of Data
Like any other government, First Nation governments require timely access to quality data to plan, manage, and account for investments and outcomes associated with their citizens’ well-being — they need data to provide evidence and information for decision making.

Despite this, there are significant data capacity gaps that prevent many First Nations governments from effectively exercising self-determination, from achieving improved outcomes, and from serving the needs of their citizens.

Data is a critical asset in today’s information-driven world. It is essential for understanding our current situation, looking ahead to the future and supporting First Nations’ self-determined goals.

What do we need from you?

Identifying Regional Priorities for the RIGC Project

To gain a comprehensive understanding of the resources available and the needs of First Nations in Ontario, we are seeking input from First Nations to create a detailed plan. This blueprint will outline the key priorities for data capacity. By working together, we can thoroughly assess the current technical, financial, and human resources and identify gaps that need attention. We are requesting your wisdom, expertise, and guidance in shaping the project.

Your feedback on this work is necessary to identify your community’s information governance and data needs.

For more information or inquiries about the First Nations Regional Information Governance Centre (RIGC) Project, please email Kahla.Campbell@coo.org or call (807) 357-1360.

To learn more about the First Nations Data Governance Strategy, watch here.

Read the strategy

Meet our Data Champion Advisory Committee

Reports, Studies and Projects

Data Landscape Research Reports

First Nations in Ontario Health Data Landscape Research Paper

This paper provides an environmental scan on First Nations health data status in the Ontario Health Care System and assesses the barriers and opportunities to advance OCAP®. Information was gathered through literature reviews, exploring data available online, and interviews with key stakeholders in the healthcare system. The First Nation health data landscape is complex, with many healthcare organizations collecting data for different purposes. Both the federal and provincial governments collect data, as do numerous independent organizations responsible for supporting the health care system. First Nations-governed organizations themselves collect a variety of data. Researchers also collect First Nations data for various studies. Understanding this landscape will help First Nations to assert and advance their data sovereignty rights in the health sector.

DOWNLOAD THE PAPER HERE

First Nations Social Data Landscape in Ontario Report

The purpose of this report is to provide an environmental scan on the status of First Nations social data in Ontario, and to assess the barriers and opportunities to advance OCAP® discovered in this scan. Information was gathered through literature reviews, exploring data available online, and interviews with key stakeholders in the social services system.

DOWNLOAD THE PAPER HERE

First Nations and Artificial Intelligence Research Paper

The Chiefs of Ontario’s Research and Data Management Sector has released a research paper analyzing the effects of Artificial Intelligence (AI) on First Nations in Ontario. AI is a powerful and disruptive technology. It has a great deal of potential, but this potential comes paired with serious risks for First Nations. This paper lays out the nature of AI technology, the proposed regulations that could govern it, and the consequences of AI for First Nations in Ontario.

Download Paper 2024_08_16_RP_First_Nations_and _AI_Paper_BW_final_Ack

People’s Reports

COVID-19 Pandemic Review: Lessons Learned for First Nations in Ontario Final Report

This report is based on an evaluation of the lessons learned from the COVID-19 pandemic between March 2020 and December 2021 for First Nations in Ontario. Supported by this initial funding, this report offers health systems, policy, and advocacy recommendations for First Nations’ organizations, leadership, and communities. It also offers recommendations for future pandemic preparedness for federal, provincial, and municipal governments who work with First Nations in Ontario.

The response to the COVID-19 pandemic was undoubtedly a first-of-its-kind. As a result, the Chiefs of Ontario set out to determine what lessons were learned and what sorts of recommendations for future pandemic preparedness could be made, in particular from the perspectives of individuals who were in decision-making, leadership, and advisory roles between March 2020 and December 2021.

At the time of writing, no known report outlines the experiences, impacts, responses, and lessons learned for First Nations in Ontario. More specifically, no known report offers this insight from the perspectives of people who were actively working to respond to the COVID-19 pandemic for First Nations in Ontario. This report includes the findings from thirty-one (31) Key Informant interviews, a document review, and a manuscript analysis. Four major themes emerged through the braiding of these pieces: Realities, Response, Resilience, and Repercussions. The evaluation led to a series of Lessons Learned for how we learn from the past, recover from the present, and prepare for the future. The Lessons Learned also offers recommendations and policy suggestions for future pandemic preparedness for First Nations in Ontario.

Peoples Report - First Nations and Diabetes in Ontario - March 2021

This People’s Report is a summary of the key findings of a research project called “Reducing the Burden of Diabetes on First Nations People in Ontario: Using Population level data to inform policy and practice”, that Chiefs of Ontario worked on with researchers at ICES, Queen’s University, the Northern Ontario School of Medicine, and Laurentian University. We worked with a regional diabetes patient advisory group as well as with five First Nations communities across Ontario. We used health services data, the First Nations Regional Health Survey, and interviews with First Nation Community members with diabetes and health care providers.

To see the full report please visit: https://www.ices.on.ca/Publications/Atlases-and-Reports/2019/First-Nations-and-Diabetes-in-Ontario.

First Nations Labour and Employment Development (FNLED) People’s Report

This report presents the results of the First Nations Labour and Employment Development (FNLED) survey. The survey was designed by the First Nations Information and Governance Centre (FNIGC). It was the first major national survey initiative focused on employment, labour, jobs, and skills in First Nations communities across Canada. The survey built on the work begun by the First Nations Regional Early Childhood Education and Employment Survey. The FNLED survey focused on filling the gap in data about the labour market in First Nations communities.

This report focuses on the work experience of First Nations people in Ontario. It describes how many people were working, what kinds of work they were doing and what was helping or getting in the way of finding good work. This report recognizes the importance of information about other aspects of the lives of First Nations people that could matter to their work experience. This information, referred to as context, is needed to understand the data. It can also inform actions in response to the data. This report provides context about First Nations language and culture, education and physical health in addition to data about the work experience of First Nations people in Ontario.

DOWNLOAD THE TECHNICAL APPENDIX

DOWNLOAD THE POSTER

Ontario First Nations Regional Health Survey Phase III People’s Report

The First Nation Regional Health Survey (FNRHS) Phase III is a continuation of the FNRHS f ive phase process. The FNRHS is only for First Nations people who reside in their own First Nation community (on-reserve). The FNRHS Phase III gathered health data that involved Ontario First Nations, with the target number of 4500 for Ontario. A total of 1951 surveys were completed by respondents from 26 randomly selected Ontario First Nations, garnering a 43.4% success rate.

Where possible, this report provides comparisons with Regional Health Survey (RHS) Phase I (2002/03), RHS Phase II (2008/10) and RHS Phase III (2015/17) to examine changes in health indicators over time and to inform health program planning. The data findings are sorted according to the Cultural Framework theme sections of Vision, Relationship, Reason and Action.

The highlights from the Vision section (current physical status) encompass health conditions and chronic diseases, diabetes, injuries and disabilities. The self reported section reveals that the top adult health conditions have been steadily increasing over previous RHS cycles. Notably, diabetes rates have been increasing. As for the youth and child health conditions, allergies and asthma continue to be at the forefront.

The Relationship section (healing and wellness) includes mental health and community issues, residential school impacts, and language and culture. In terms of language use, all respondent categories indicated that speaking a First Nations language is important to them. Likewise, the use of traditional medicine continues to be utilized for health care. Unfortunately, a high percentage of both adult males and females reported that they did not seek any help to deal with any experienced physical and/or verbal aggression.

The Reason section (socio-economic determinants of health) includes income, education, family structure, housing and living conditions, and health care access. Almost half of adult respondents indicated that they have moved away from their community for employment. Mold in homes is still a major concern for 42.5% of adult respondents. Barriers to health care coverage through NIHB is still experienced especially with dental care, medicines and vision care.

The Action section (health promotion) includes: non-traditional tobacco use, alcohol and drug use, and nutrition and physical activity. The rates for daily cigarette smoking has declined from previous RHS cycles. Forty percent of adults reported smoking cigarettes daily while six percent of youth reported the same. Similarly, those abstaining from alcohol has risen from previous RHS cycles. However, the Body Mass Index (BMI) rate for the overweight and obese classes have been increasing over the past RHS cycles for both adult and youth respondents.

Mental Health and Addictions System Performance in Ontario First Nations (2009 2019) - Full Report and Executive Summary

This report presents the combined results of the Mental Health and Addictions Systems Performance First Nations in Ontario (2009-2019) Interim Report, October 2021, and the Final Report, September 2022. This work was done by ICES in response to a request by the Chiefs of Ontario First Nations Mental Health and Addictions Working Group under the Trilateral First Nations Health Senior Officials Committee, as a First Nations specific analysis following release of the Ontario Mental Health and Addictions (MHA) Scorecard. The mainstream reports provide comprehensive trends over time in Ontario’s MHA system, including measures of MHA-related hospital and emergency department use access to receiving mental health care; and outcomes such as intentional self-injury and suicide. Since the performance of Ontario’s MHA system for First Nations in Ontario was unknown, the First Nations report was intended to replicate that work in order to provide baseline data specifically for First Nations in Ontario. ICES received approval from the Chiefs of Ontario to use the Indian Register (IR) for this project on March 12, 2018. The IR is linked with ICES health administrative data to identify First Nations people in Ontario with a history of MHA-related service use and outcomes for First Nations people, compared to non- First Nations people. This is the first project to assess the ability of the MHA-system to provide services to the First Nations population in Ontario. ICES was funded for this project by the Ontario Ministry of Health (MOH).

DOWNLOAD THE EXECUTIVE SUMMARY

Conference Reports

Powering Up Data Sovereignty: Shape Your Own Research and Data Future Post Conference Report

The Chiefs of Ontario’s (COO) Research and Data Management Sector hosted their first conference in October 2023 called the ‘Powering up Data Sovereignty Conference’. While COO has hosted many conferences over the years, this event marked a significant milestone for the Research and Data Management Sector. The event was held on October 24th, 25th, and 26th, 2023 at the Courtyard by Marriott in Toronto, Ontario, Canada on the Traditional Territories of the Wendat, the Haudenosaunee Confederacy, and the Anishinaabeg, including the Chippewas and the Mississaugas of the Credit. The conference was attended by hundreds of attendees, dozens of delegates, speakers, exhibitors, and honoured guests from a wide range of experiences and expertise in First Nations’ research and data. For three days, we shared our Knowledges, learned from one another, and strengthened our connections with each other and our understandings of the importance of First Nations Data Governance and Sovereignty.

DOWNLOAD REPORT HERE

Mental Health and Addictions System Performance in Ontario First Nations (2009 2019) - Interim Report

Access to Mental Health and Addiction (MHA) services have been identified as a priority within First Nations communities. Consequently, there is a need for a focused report assessing MHA service use and system performance. A request was submitted to ICES by the Chiefs of Ontario to replicate an Ontario Mental Health Scorecard1 using First Nations identifiers across the lifespan. The Indian Register (IR) has been linked with ICES health administrative data and is used to identify First Nations people in Ontario with a history of MHA-related service use and outcomes. ICES received approval from the Chiefs of Ontario to use the IR for this project on March 12, 2018. It examines rates of mental health service use and median length of hospital stay for First Nations people, compared to non- First Nations people and to Ontario overall. This is the first project to assess MHA-related performance indicators and factors relating to those indicators among the First Nations population in Ontario.

Other Research Reports

First Nations COVID Opioid-Related Poisoning Report

Ontario deaths due to opioid-related poisoning have increased substantially during the COVID-19 pandemic; however, little is known about the impacts of the pandemic on rates of opioid-related poisoning among First Nations people specifically. This information is needed to ensure Ontario’s public health response is informed by the needs of First Nations communities and to provide communities with First Nations-specific data to inform their local responses.

The Chiefs of Ontario (COO; PI Bernadette deGonzague) and Ontario Drug Policy Research Network (ODPRN; PI Tara Gomes) have been collaborating on research led by a Steering Committee of First Nations representatives and community members to better understand trends in opioid use and opioid-related poisoning among First Nations people in Ontario. A companion report, ‘Opioid use, related harms, and access to treatment among First Nations in Ontario, 2013-2019’, examines trends in opioid prescribing and opioid-related poisoning among First Nations and non-First Nations people in the province4. This accompanying report provides recent information on the impact of COVID-19 on trends in opioid-related poisonings. Specifically, we describe the impact of COVID-19 on hospital visits and deaths due to opioid-related poisoning among First Nations and non-First Nations people in Ontario, Canada.

DOWNLOAD THE INFOGRAPHIC

First Nations Opioid Use Harms and Treatment Report

Opioid-related harms are a leading public health issue in Canada. While the opioid crisis impacts communities across the country, research suggests that First Nations communities are at a higher risk of experiencing opioid-related morbidity and mortality due to the intergenerational impacts of colonialism and residential schools, the historical erosion of First Nations culture, and the ongoing barriers to accessing health care services.4,5 However, there is little published research examining prescription opioid use, access to treatment, and opioid-related harms among First Nations people at a provincial or national level. As a result, First Nations communities and policymakers in Ontario have not had access to the data needed to generate evidence-based and culturally informed responses to the opioid crisis.

Over the past several years, the Chiefs of Ontario (COO) and the Ontario Drug Policy Research Network (ODPRN) have been collaborating to study opioid prescribing and opioid-related harms among First Nations people in Ontario. In 2013, the Chiefs in Assembly passed a Prescription Opioid Surveillance Resolution 13/10 which mandated COO to begin this work and saw the establishment of the Opioid Surveillance Steering Committee, guided by an Elder and comprised of First Nations representatives from the Political Territorial Organizations, Independent First Nations, Six Nations of the Grand River, and the Ontario First Nations Young Peoples’ Council. This Steering Committee continues to guide the research questions, approaches, and interpretations of the data, ensuring that the research meets the needs of the community and is culturally relevant. The timeline below outlines our progress, beginning in 2013 and continuing into the future.

DOWNLOAD THE INFOGRAPHIC

ICES: First Nations and Diabetes in Ontario - November 2019

This report is the result of a collaborative project between the Chiefs of Ontario and ICES and their academic partners. It is a response to the calls to action contained in the 2015 report of the Truth and Reconciliation Commission of Canada.

Honouring principles established to observe First Nations data sovereignty and employing approaches from community-engaged participatory research, the report examines the prevalence and incidence of diabetes, as well as health outcomes and service utilization of people with diabetes, comparing First Nations people living in and outside of First Nations communities with other people in Ontario between 1995/96 and 2014/15.

Ontario First Nations Aging Study

The Ontario First Nations Aging Study, launched in 2015, is a collaboration between the Chiefs of Ontario and university researchers. The study has involved a dedicated and diverse team of advisors, community members, researchers, and leaders. Our goal was to create the first Ontario-wide profile of aging in First Nations populations. This summary report highlights the findings from three key sources of information:

a series of conversations about aging well with Anishinaabemowin language speakers and older Anishinaabeg on Manitoulin Island;
the First Nations Regional Health Survey, Phase 2, which was coordinated by Chiefs of Ontario. The survey was done in 24 First Nations communities in Ontario in 2008-2010. For this report, we focused on adults aged 45 and older; and
health services data (hospital visits, doctor visits, etc) for all First Nations people living in Ontario who have status and are listed in the Indian Register with the federal government. We used the health services data held at ICES for the nearly 55,000 First Nations adults aged 45 and older living in Ontario who have an Ontario Health Card.

If you are interested in the details of what we did, please see the technical appendix that includes our detailed methods at https://laurentian.ca/faculty/JWalker2.