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COO Data Governance Committee Application Form

Administrative Fee:
Applications are subject to a fifteen hundred ($1,500.00) administrative fee.  Considerations will be made if 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
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
Telephone: 416-597-1266
Toll Free: 1-877-517-6527
 
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.



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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.

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Mandate to Move Forward – First Nation Health Research and Data Management

The Health Research and Data Management Sector derive 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

Background and Context

Extensive work has taken place in First Nations community-based research and in the implementation of First Nations surveys. More data is available for First Nations communities now than ever before, such as the First Nation Regional Health Survey (FNRHS), the First Nations Early Childhood, Education and Employment Survey (FNREEES), and the Indian Registry System (IRS) matched data at ICES. These data have 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 Nation health research and data management that will meet the collective needs of First Nations communities.

Over the past 20 years, there have been significant changes in First Nations health research and data management. Much of this change has stemmed from First Nations people deciding their own ways forward that challenges colonial assumptions and Eurocentric thinking.

Nationally:

It was a common practice of Indian and Northern Affairs Canada to release the Indian Registry System data base to researchers, government and scheduled agencies of provincial and federal governments to conduct research and surveillance in First Nations communities. This practice was done without informing or obtaining consent from First Nations to collect or release the data. In 1991, Cancer Care Ontario obtained a copy of the national Indian Registry System (IRS) data base and released one of the first studies using the IRS to study the patterns of cancer in Ontario’s First Nations population. Even though, Ontario First Nations did not give consent or were aware of the study, it did show a benefit in conducting such research using administrative data.

In 1996, Assembly of First Nations passed a resolution banning Census Canada from entering First Nations communities. Previous to 1996 Census Canada entered into communities without permission and collected data. In 1997, the Regional Health Survey (RHS) was piloted in four regions of the country. Ontario was one of the four regions to pilot the RHS. At the same time at a RHS National meeting the principles of OCA (Ownership, Control and Access) was coined; a year later the word possession was added to become OCAP. In 2014, OCAP® was trademarked and registered as First Nations principles.

Ontario:

In Ontario from 2009 to 2016 significant changes happened. The All Ontario Chiefs in Assembly passed a resolution to move forward in developing a First Nations Health Surveillance system with the first priority, Cancer Surveillance. Chiefs of Ontario, in partnership, with the Institute for Clinical Evaluative Sciences (ICES), First Nations Inuit Health Branch (FNIHB) and Cancer Care Ontario (CCO) submitted an application to access and transfer the Indian registry system data to ICES. In April 2012, Chiefs of Ontario signed a data governance agreement with ICES. This Agreement spells out how the IRS data and other First Nations data identified by postal codes or geographically would be governed; a data sharing agreement was signed between ICES and Aboriginal Affairs Canada (formerly INAC) to release the data to ICES; and a data sharing agreement was signed with 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 along with the Ontario Strategy for Patient Oriented Research Support Unit (OSSU), the Institute and the Centre for Rural and Northern Health Research (CRaNHR) hosted the first First Nations Health Research Symposium. The goal was to identify First Nations priorities in health research and to set the beginning 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 Health Research and Data Management work at the Chiefs of Ontario.

Objectives

The objectives of the COO First Nation Data Management and Health Research Sector Strategic Plan are as follows:

  1. to support and enable First Nation data management and governance at the community and regional level;
  2. to establish enabling processes that build commitment and functional partnerships;
  3. to collaborate, collect, develop, and analyse First Nations health research and data while promoting Indigenous ways of knowing that benefit communities locally and regionally; and
  4. 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:

  1. Develop a First Nations health research and data management centre.
  2. Partnerships and Capacity Building
  3. First Nations health research and surveillance.
  4. Data sovereignty and governance.