Research & Data Management
Overview
Research and Data Management (RDM) concentrates its efforts on the data sovereignty, governance, and management of First Nations data, at the community and regional levels; First Nations health research; knowledge transfer and evaluation. The Research and Data Management Section maintains an ongoing relationship with the Institute for Clinical Evaluation Sciences (ICES), researchers, and funding partners to focus on collaborating on relevant research projects that matter to the First Nation Peoples in Ontario.
RDM gets its mandate from AOCC Resolution 14/09-First Nation Data Governance Models, AFN Resolution no.21/2015 Support for Continued Investment of First Nations Data Information Governance, and AFN Resolution no.56/2016 Funding for Regional First Nations Information Government Centres.
The Research and Data Management Sector derives its mandate from several sources:
- AOCC Resolution 09/33 – First Nation Cancer Surveillance
- PC Motion September 1, 2010 – First Nation Information System with Priority in Cancer Surveillance
- Data Governance Agreement April 2012 – Institute for Clinical Evaluative Sciences
- AOCC Resolution 14/09 – First Nations Data Governance Models
- AOCC Resolution 16/15 – First Nations Access to Data
- AFN Resolution 21/2015 – Support for Continued Investment of First Nations Data and Information Governance
- AFN Resolution 57/2016 – Funding for Regional First Nations Information Governance Centres
Extensive work has taken place in First Nations community-based research, as well as, in the implementation of First Nations surveys. More data is available for First Nations communities now, than ever before. This includes the First Nation Regional Health Survey (FNRHS); First Nations Early Childhood, Education, and employment Survey (FNREEES); and the Indian Registry System (IRS) that matches data with ICES. This data has vast potential to assist First Nations in answering research questions to address their needs, at both community and regional levels. To facilitate the effective use of the data, there is a need to have a coordinated effort in First Nations data and management, that will meet the collective needs of First Nations communities.
Over the past 20 years, there have been significant changes in First Nations research and data management. Much of this change has stemmed from First Nations people deciding their own ways forward, that challenges the colonial assumptions and Eurocentric thinking.
Nationally:
Historically, it was common practice of Indian and Northern Affairs Canada to release the Indian Registry System data base to researchers, governments, and scheduled agencies of the provincial and federal governments. This data was used to conduct research and surveillance in First Nations communities. This practice was done without informing or obtaining consent from First Nations, in order to collect or release the data. In 1991, Cancer Care Ontario obtained a copy of the National Indian Registry System (IRS) data based and released one of the first studies, using the IRS to study the patterns of cancer in Ontario’s First Nations populations. Despite the fact that First Nations communities did not consent or were aware of the study, this study proved to show a benefit in conducting such research, using administrative data.
Prior to 1996, Census Canada was able to enter into communities without permission to collect data. In 1996, the Assembly of First Nations passed a resolution banning Census Canada from entering First Nations communities.
In 1997, the Regional Health Survey (RHS) was piloted in four regions of the country, which included Ontario. At the ame time, at an RHS National meeting, the principles of OCA (Ownership, Control, and Access) was coined; and a year later, the word Possession was added to become OCAP®. OCAP® was then trademarked in 2014 and registered as First Nations principles.
Ontario:
From 2009 to 2016, Ontario underwent significant changes in regards to First Nations health policies and mandates. The All Ontario Chiefs in Assembly passed a resolution to move forward in developing a First Nations Health Surveillance system, with it’s first priority in Cancer Surveillance. Chiefs of Ontario, in partnership with the Institute for Clinical Evaluative Sciences (ICES), First Nations Inuit Health Branch (FNIHB), and Caner Care Ontario (CCO) submitted an application to access and transfer the Indian Registry System data to ICES. In April of 2012, Chiefs of Ontario signed a data governance agreement with ICES which outlined the following: how the IRS data and other First Nations data identified by postal codes or geographically would be governed; a data sharing agreement signed between ICES and Aboriginal Affairs Canada (formerly INAC) to release the data to ICES; and a data sharing agreement signed between ICES, CCO, and COO to release de-identified IRS data to CCO to update the First Nations Cancer incidents up to 2010.
In February 2016, Chiefs of Ontario, alongside the Ontario Strategy for Patient Oriented Research Support Unit (OSSU), the Centre for Rural and Northern Health Research (CRaNHR) hosted the 1st annual First Nations Health Research Symposium. The goal was to identify First Nations priorities in health research and to set the begging of a First Nations Health Research Agenda for Ontario.
These agreements that have been signed set the foundation in moving forward with the development of the Ontario First Nations Health Research Agenda and the First Nations Research and Data Management work at the Chiefs of Ontario.
The objectives of the COO First Nation Research and Data Management Sector Strategic Plan are as follows:
- to support and enable First Nation data management and governance at the community and regional level;
- to establish enabling processes that build commitment and functional partnerships;
- to collaborate, collect, develop, and analyze First Nations health research and data while promoting Indigenous ways of knowing that benefit communities locally and regionally; and
- to facilitate the process to gain sovereignty and governance over First Nations data on a regional and local level.
For the Chiefs of Ontario to fulfill its mandate as set out by the Chiefs in Assembly, the following four strategic directions have been developed to move health research and data management/governance forward for the next five years.
Strategic Directions
The following are the four strategic directions that will support the four objectives mentioned above:
- Develop a First Nations health research and data management centre.
- Partnerships and Capacity Building
- First Nations health research and surveillance.
- Data sovereignty and governance.
Data Governance
COO Data Governance Committee Application Form
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:
- April 15, each year and reviewed in May (please note: because of the uncertainty of COVID-19 and work environments, the Chiefs of Ontario will be extending the application deadline to May 31, 2020 at midnight)
- 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 Roseanne Sutherland, Senior Lead, Research and Data Management at Roseanne.Sutherland@coo.org or 416-986-9856 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
Reports and Studies
Ongoing Projects
The Chiefs of Ontario Research and Data Management sector is consistently developing and working on internal and external projects. The list below is a brief overview of our current ongoing projects.
First Nations Data Governance Strategy
Ontario First Nations have done leading work in data driven research projects aimed at understanding and addressing the socio-economic and health inequalities and strengthening their communities. In order to advance this work, an Ontario Data Champion Team, led by Mariette Sutherland, and under the guidance of the Data Champion Advisory Committee has begun implementing the First Nation Data Governance Strategy (FNDGS).
The FNDGS envisions a First Nations-led regional information governance centre, designed and built based on the needs and priorities expressed by Ontario First Nations. The strategy is rooted in community driven and Nation-based collaborative approaches and will chart the path necessary to further advance First Nations’ self-determination.
To learn more about the First Nations Data Governance Strategy, watch here.
Past Projects
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.
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.
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.
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.
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.
Mental Health & Addictions
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).
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.
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.
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.
First Nations and Diabetes in Ontario
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.
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.
Contact Research and Data Management
Carmen R. Jones
Director of Research and Data Management
Carmen.Jones@coo.org
or sally.hare@coo.org
(416) 597-1266
Toll-Free: 1-877-517-6527
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