The First Nations Information Governance Centre: Our Mandate, Our Work and Our Path Forward Presented to First Nations Health Manager s Association November 4, 2015 1
Presentation Outline FNIGC Overview First Nations Regional Health Survey (RHS) First Nations Data Centre (FNDC) First Nations Early Childhood, Education and Employment Survey (FNREEES) OCAP (Ownership, Control, Access, Possession) Upcoming Survey 2
Who is the First Nations Information Governance Centre The FNIGC is a First Nations organization mandated to serve the information, research and training needs of First Nations. FNIGC conducts unique datagathering initiatives, such as the Regional Health Survey (RHS) and First Nations Early Childhood, Education and Employment Survey (REEES) and soon a new national survey process that will focus on employment and labour. These surveys provide an abundance of credible information on First Nations on reserve and northern communities. The surveys build culturally relevant portraits of the lives of First Nations people and the communities they live in. The FNIGC supports research, training, data collection, analysis and dissemination services to First Nations at the community, regional and national levels. 3
The Power of Data FNIGC recognizes that quality information - information that is collected by First Nations people for First Nations people - has the power to change lives by influencing knowledge based decision-making and inspiring effective policy and programs for all First Nation communities 4
Achieving Success FNIGC celebrated it s 5 th Anniversary in April this year having federally incorporated in 2010 following the receipt of its mandate from the Assembly of First Nations Chiefs in Assembly (# 48-2009). This milestone is a proud achievement. With each successive year, FNIGC continues to fulfil its mandate, vision and objectives with a strategic focus on supporting First Nation Information Governance at all levels and promoting the First Nations Principles of OCAP 5
FNIGC Vision & Mission Vision: The FNIGC is the premier indigenous model for research and data contributing directly to the well being of First Nations peoples. Mission: The FNIGC, under the guidance of its member organizations, support the capacity to provide credible and relevant information on First Nations using the highest standards of data research practices, while respecting the rights of First Nations self determination for research and information management and in true compliance with the First Nations principles of Ownership, Control, Access and Possession (OCAP ). 6
FNIGC Core Strategic Directions 1. Demonstrating the Impact of Information Governance 2. Maintaining Standards of Excellence within an Expanding Scope of Work 3. Supporting the Implementation of a cohesive National-Regional Info structure 4. Developing a Research Growth Pathway 7
Governance in Our Data Life Cycle Activities Includes: Data Collection Data Stewardship Data Processing Data Accessibility & Utilization Data Dissemination Community Capacity Enhancement Training Partnerships and Proposal Development 8
Special Projects of Interest Under Development Regional On-Line Data Tools Implementation of 10 Regional Online Data Tools that will provide our First Nations Regional Survey Partners the power to maximize knowledge transfer via an innovative, user friendly and interactive interface. Users can simply point and click, creating tables and graphs within seconds. For a demonstration of the FNIGC On-line Data tool, please go to http://data.fnigc.ca/online. Collaborative Review of Research Priorities and Partnerships Project. It will seek to: Identify priority research themes and "burning issues" shared by First Nations across regions and communities, as well as by federal partners and stakeholders. Build awareness of the RHS, REEES and Community Surveys as viable data sources, collected in compliance with the First Nations principles of OCAP Identify collaborative research opportunities, based on the shared priorities identified and openness to First Nations-led surveys and research, to inform First Nations, their supporting organizations, and federal decisionmakers. 9
Regional Health Survey For First Nations by First Nations Founded in 1997, the RHS collects information about on-reserve and northern communities on health and well-being The First Nations and Information Governance Centre collaborates with Regional Partners (since 1997) to implement the survey The RHS has gone through four cycles (1 st cycle= Pilot) and has collected quality, culturally relevant data Results from previous phases of the RHS have influenced and informed programs such as the Aboriginal Diabetes Initiative and the Aboriginal Head Start on-reserve Program and many others 10
RHS Phase 3: 2015 Regional Health Survey For First Nations by First Nations Data collection began throughout the Spring of 2015, and concludes in Spring 2016 Data Analysis and dissemination of results will occur over 2016/2017 Reporting for RHS Phase 3 is targeted for 2017/2018 11
Power of Data Regional Health Survey For First Nations by First Nations FNIHB Policy utilizes RHS data to support briefings, presentations and requests for health status information RHS results from national reports are used to inform reporting requirements to Treasury Board and Parliament Program evaluations use results from the RHS national reports to assess relevance, support community programming and inform renewal of program fundin. 12
Regional Health Survey For First Nations by First Nations Power of Data A number of reports have been produced for internal and external use: Physical Activity: Two academic manuscripts published in Canadian Journal of Public Health exploring correlates of physical activity among First Nations children and youth. Report on the Findings of the First Nations Oral Health Survey: Provides information to increase the understanding of the oral health needs of First Nations. Health & Well-Being of Senior s (Forthcoming) will: provide a statistical overview of First Nations seniors living on reserve and northern First Nations communities; identify relevant indicators of health and well-being, as well as examine their association with potential determinants; will highlight the social, cultural and health-related factors that are associated with positive aging experiences. 13
Regional Health Survey For First Nations by First Nations Power of Data Stories In spring 2015, FNIGC launched a series of articles intended to highlight the positive real-world impact that data from the RHS has had in First Nations communities over the past two decades. Three stories, Yukon (Dawson City), Nova Scotia (Eskasoni), and Ontario (Ottawa), are being used by our Regional Partners as a Communications tool to help encourage community participation during the RHS Phase 3 data collection process. To build on the positive reception the initial series, this next stage of the Power of Data series will explore the role RHS data has played in shaping federal government policy and programs in other regions, and by extension the positive impacts these decisions have had for those living in First Nations communities across the country. 14
Regional Health Survey For First Nations by First Nations Special Mention: Power of Data: Kahnawake, QC First time participants Utilizing data going forward for comprehensive planning Unique relationship with the First Nations of Quebec & Labrador Health & Social Services Commission funded by the Commission to manage the survey process independently Power of Data story will be published in Dec 2015 15
First Nations Data Centre Offers data access to individuals pursuing academic research, policy development, and program planning and evaluation The First Nations Data Centre will provide, under strict review protocols and contracts, access to unpublished data from the Regional Health Survey (RHS) and soon the Regional Early Childhood, Education and Employment Survey (REEES) to approved applicants on a pay-per-use basis The data accessed must not be used for commercial purposes http://fnigc.ca/first-nations-data-centre/welcome-fndc.html 16
First Nations Regional Early Childhood, Education & Employment Survey AFN Chiefs in Assembly mandated the REEES in 2011 Survey developed based on a cultural framework which drew upon the Canadian Council on Learning s First Nations Holistic Lifelong Learning Model Data collection for the FNREEES concluded on May 31, 2015 with a 69.5% response rate 17
FNREEES National Reports March 2016 1. Early Childhood Development: Relationship between wellness, culture and early childhood development 2. Education: Relationship between wellness, culture and educational success 3. Employment: Three sections: a) Youth and Adult Employment Relationship between wellness, culture and employment or Youth (ages 15-17) and Adults (18+) b) Employment and the Labour Market Current profile of Labour Markets in First Nations Communities; and Trends in First Nation Labour Markets c) Employment and Economic Development Exploration of employability (skills & readiness) of First Nations Youth (15-17) and Adults (18+); and Projections of future demand for First Nations individuals entering labour market 18
FNREEES National Data Release Conference Presentations of National Key Findings FNIGC FNREEES Process Video Special Key note addresses Presentations of Regional Key Findings Skill Building Workshops Networking Opportunities Celebrating our Successes http://fnigc.ca/news/national-conference-feature-first-results-landmark-first-nationssurvey.html 19
The Community Survey will roll out to 330 First Nations communities in a new electronic format in 2015. The Survey will provide a valuable portrait of communities by surveying community on series of themes, each intended to represent range of issues First Nations communities face across 12 themes: 1. External environment 2. Shelter and infrastructure 3. Housing 4. Food and nutrition 5. Employment & Economic Development 6. Early Childhood Development 7. Education 8. Justice and Safety 9. Health Services 10. Social Services 11. First Nations Identity 12. First Nations Governance http://fnigc.ca/news/introducing-2015-first-nationscommunity-survey.html First Nations Community Survey 20
The First Nations Principles of OCAP Where did the term OCAP come from? What does OCAP really mean? What about OCAP Certification?
OCAP is OCAP guides a community in making decisions regarding why, how and by whom information is collected, used or shared. It reflects a First Nations commitments to use and share information in a way that brings benefits to the community, while minimizing harm. It expresses First Nations jurisdiction over information about First Nations.
OCAP is. All First Nations own OCAP. The interpretation of OCAP is unique to each First Nation community or region. First Nations have learned, through many instances of misuse of our information, that we cannot expect government, researchers or corporations to understand or be aware of our interests and concerns.
Understanding OCAP OCAP has become the standard for conducting research with First Nations and has grown beyond research to include the governance of all First Nations information. OCAP has been successfully applied in communities across Canada as communities are increasingly asserting jurisdiction over their own data. One of the positive by-products of this has been the trademarking of OCAP through The FNIGC.
What does OCAP mean? A description is useful to provide some understanding of the context of the term OCAP. OCAP goes beyond the strict definition of each word in the acronym as it represents principles and values that are intertwined and reflective of First Nations world-view of jurisdiction and collective rights. ~Bonnie Healy, AFNIGC once explained: We cannot pick and choose which elements of OCAP that will be followed. They are one. We cannot ignore ownership or possession any more than the Four Directions can omit the East or the North.
Ownership Ownership: The notion of ownership refers to the relationship of a First Nations community to its cultural knowledge/ data/ information. The principle states that a community or group owns information collectively in the same way that an individual owns their personal information. Ownership is distinct from stewardship. The stewardship or custodianship of data or information by an institution that is accountable to the group is a mechanism through which ownership may be maintained.
Control Control: The aspirations and inherent rights of First Nations to maintain and regain control of all aspects of their lives and institutions extend to information and data. The principle of control asserts that First Nations people, their communities and representative bodies must control how information about them is collected, used and disclosed. The element of control extends to all aspects of information management, from collection of data to the use, disclosure and ultimate destruction of data.
Access Access: First Nations must have access to information and data about themselves and their communities, regardless of where it is held. The principle of Access also refers to the right of First Nations communities and organizations to manage and make decisions regarding who can access their collective information.
Possession Possession: While ownership identifies the relationship between a people and their data, possession reflects the state of stewardship of data. First Nation possession puts data within First Nation jurisdiction and therefore, within First Nation control. Possession is the mechanism to assert and protect ownership and control. First Nations generally exercise little or no control over data that is in the possession of others, particularly other governments.
First Nations Inherent Right and Jurisdiction over Information and Research Information is a resource and has value. Information can be used to advise policy and decision-making; it enhances understanding of a particular area of study, and can be used to leverage funding, e.g. health and social programs & services Yet that same information can also harm a community and can lead to discrimination and stigmatization and harm relationships and lead to mistrust. First Nations themselves are the only ones that have the knowledge and authority to balance the potential benefits and harms associated with the collection and use of their information.
What is First Nations Data? First Nations Data: Includes any information or data set collected, created or held by an individual or organization, now or in the future, that is capable of identifying First Nation communities, First Nation membership, Indian status, or residence in a First Nation community.
First Nations information as a Resource with Value When First Nations information is viewed as a resource, to both First Nations and non-first Nations, it is easier to see that the governance of that resource is part of a First Nation s inherent right. Inherent right implies having the required authorities to enact laws, governing structures, institutions, processes; and the institutional capacities to support that authority.
How can First Nations exercise jurisdiction in relation to Information Governance? First Nations can exercise jurisdiction through enacting privacy laws in their community and access to information laws, (e.g. laws that govern how community information can be used and under what circumstances). Policies and procedures could also be developed that provide direction on the protection of personal privacy and community privacy (and security).
Where do you begin? First Nations can start by investigating where First Nations information/data is held or collected and consider how they can exert governance over that data. Federal and provincial governments, universities, and other organizations hold First Nations data. Governance can be exerted through repatriation of the data back to the First Nation. Where repatriation is not possible or practical, data governance agreements or data sharing agreements can be reached that effectively maintain First Nation control over data.
Where do you begin? (cont. ) Returning that information to First Nations is similar to repatriation, protection of cultural medicinal knowledge, regaining sacred material from museums, or getting back land. OCAP is about legitimacy and accountability for First Nations' authorities and institutions.
Why is OCAP Trademarked? The FNIGC Board of Directors determined that we needed to protect the term and definition of OCAP from misuse and/or misinterpretation of the principles by others. The principles are First Nations principles not Aboriginal Principles. OCAP is a trade-mark of the First Nations Information Governance under license/or used with permission. Centre, used
OCAP Certification What is OCAP Certification? A process that will provide researchers and organizations an opportunity to have their projects reviewed to determine if OCAP standards have been met. If so, the OCAP Certified Stamp will be provided. The Project Proponent will provide a detailed description of the project, including project proposals, identification and brief biographies of participants and will complete the OCAP Assessment Tool which will encompass approximately 40 questions related to each element of OCAP.
Why Seek Certification? Why would a researcher or research project want to achieve the OCAP Certification for their project? To demonstrate the value and respect placed in OCAP while working with First Nations. To achieve the highest standard for ethical research practices.
OCAP Certification How will this Process be implemented? While the process is still under development; it is envisioned that the review process can be undertaken at a national, regional or community level utilizing a standardized review criteria and documentation application package. The FNIGC holds the trademark for OCAP and OCAP Certified and will work with communities and regional organizations to process certification applications. The onus to meet certification standards will rest with the researcher or organization seeking certification. A minimal fee will be charged Successful proponents will receive an OCAP Certified Letter and their project listed on the FNIGC.ca website.
Privacy and Data Governance Course The FNIGC is developing the next On-Training Training course that will address Privacy and Data Governance. This course is planned for Release in Early Spring 2016. The course will include a focus on issues related to information privacy and First Nations in Canada with an overview of the fundamental principles of privacy and security of personal information management. 40
Privacy and Data Governance Course The FNIGC is developing the next On-Training Training course that will address Privacy and Data Governance. This course is planned for Release in Early Spring 2016. The course will include a focus on issues related to information privacy and First Nations in Canada with an overview of the fundamental principles of privacy and security of personal information management. 41
Upcoming Employment & Labour Survey Recognized need within First Nations communities, organizations and the federal government to collect quality information on economic well-being (employment, income, workforce preparedness, skills proficiency, etc.) FNIGC to develop, conduct and evaluate Employment & Labour Survey: April 2016 March 2021 42
Upcoming Employment & Labour Survey Will provide relevant and valuable data to support policy and program development Inform decision-making that reflects current needs of First Nations on Reserve and Northern communities Facilitate basic understanding of context and complexities of meaningful employment and economic development in First Nations and Northern Communities 16/11/2015 43
Questions? For additional information on the FNIGC; please refer to our website: http://fnigc.ca/ For additional information on the RHS, please contact Addie Pryce, RHS and Capacity Development Coordinator (apryce@fnigc.ca) For Additional information on OCAP, please contact Jerry Lanouette, Training and Development Coordinator (jlanouette@fnigc.ca) OCAP is a Registered Trademark of the FNIGC; used under license or with permission. 44