Currently, First Nations Health information is held by the Federal, Provincial and First Nations governments. With no agreement as to how this information can and should be used, statistics concerned with First Nations Health are often interpreted without proper background and context. A Tripartite working group has been struck and this group has completed a draft data sharing agreement. The purpose of this agreement is to:
a) improve the quality of First Nations data,
b) facilitate data sharing, and
c) Ensure that federally and provincially held information on First Nations is properly used and shared.
Put simply, such an agreement would allow for First Nation individuals health information to be shared between the federal, provincial, and First Nations governments. The rationale behind this is to improve health service delivery to First Nations by housing accurate and up to date information. Currently, the three parties have reached a draft agreement and each has sent it for legal review.
Each party has different priorities behind wanting increased access to data. For First Nations, access to their own data is paramount, along with the understanding and support of both governments to build the capacity of First Nations to implement the principles of Ownership, Control, Access and Possession (OCAP). A huge driver behind this initiative is the governance aspect. Because research drives policy development, First Nations need to be armed with accurate information to effectively plan and implement programs and services at a community level.
Another function of the Tripartite Data Quality and Sharing Working Group is to develop templates for ethics review boards at provincial, regional and community levels, and to provide a legal perspective on research policy. Both Canada and BC have Privacy Acts that are general and delegate the protection of information to the organization housing the data. FNHC is working to create some rules around individual and community information, how to keep it secure, how to ensure that people’s rights are being protected.
Tripartite First Nations Data Quality and Sharing Working Group
Terms of Reference: The purpose of the Tripartite Data Quality and Sharing Working Group is to continually improve the quality of First Nations data, to facilitate data sharing (including linkages of databases), and ensure that federally and provincially held information on First Nations is properly used and shared.
Responsibilities:
• To develop a renewed data sharing agreement between the Government of British Columbia, First Nations Health Council, and the Federal Government (Health Canada, First Nations and Inuit Health and Indian and Northern Affairs Canada) (Action #28, First Nations Health Plan);
• To undertake data quality improvement initiatives;
• To review research proposals and requests for data access and make recommendations to the governing body;
• To support data development for new performance indicators identified through the Tripartite First Nations Health Plan;
• To examine ways to support and develop First Nations capacity and
self-determination around collection, use and dissemination of First Nations data.
Membership:
The working group is comprised of:
• First Nations Health Council representatives
• Aboriginal Health Physician Advisor, Office of the Provincial Health Officer
• Executive Director and Director of Policy and Planning, Aboriginal Health Branch, MoH
• Executive Director, Health Information and Modernization Branch, Knowledge Management and Technology Division, MoH
• Director, Population Health Surveillance and Epidemiology, MoH
• Regional Program Medical Officer, First Nations Inuit Health – BC Region,
Health Canada
• Strategic Research and Analysis Directorate, Indian and Northern Affairs Canada (INAC)
• Provincial Health Services Authority representative.
Ad hoc participation may include officials from various agencies, organizations, and ministries as required.
Goal #1: Improving health outcomes through better statistics (Action item #28 in TCA:FNHP)
Key Components
• Inaugurate a formal process that brings strong First Nations voice to the table
• Ensure First Nations interests are served by the use of First Nations data
• Develop data resources needed to monitor First Nations Health
• Improve First Nations Health outcomes
Agreement Provisions:
• Data Governing Body is constituted
• FNHC has effective control of FN data via consensus decision making
• Objectives section
Goal #2: Address issues of Governance of Health Information (action item #6)
Key Components
• Address issues of governance involving First Nations data
• Recognize OCAP principles and facilitate a transition to OCAP