The Tripartite Partners agreed in the Tripartite First Nations Health Plan (TFNHP) that the Provincial Health Office would provide First Nations health status reports every five years, with interim updates being provided every two years. This is how the seven indicators mentioned in the TFNHP would be monitored. In order to assume new health governance responsibilities, the Tripartite Partners will need to report on six ‘Action items’ that are related to research and surveillance. Progress in these areas will demonstrate that we are moving forward in implementing a vision for First Nations-driven health care services for First Nations by 2017.
A Memo from the Tripartite Data Quality and Sharing Working Group
In the past, it has often been difficult to get complete, accurate population health data about First Nations in BC, because both the federal and provincial governments held different pieces of the health data puzzle. To fix this issue, the Province and Indian and Northern Affairs Canada (INAC) have signed a memorandum of understanding, which will allow INAC to supply the Province with a yearly data extract. The data will come from the Indian Registry System, and can be used to link with provincial health databases to create the best possible population health information for Registered First Nations (Status Indians) in BC. This “data match” will use a combination of federal and provincial data, and provide a more complete data picture, using what will be the best possible source of First Nations information.
Tripartite Data Memo- April 25 2011 | pdf download |
Read the Agreement: BC Tripartite Data Quality and Sharing Agreement | pdf download |
The need to develop First Nations research and surveillance capacity influenced the development of these six action items. Because research and surveillance results have the potential to influence policy, it is important to have expert knowledge about how First Nations data is used and interpreted. In addition, First Nations need to be armed with current, accurate and measurable information to effectively plan and implement programs and services at the community level and influence regional or provincial services accessed by First Nations.
A Reciprocal Accountability Framework will identify how the Tripartite Partners will be accountable to each other for implementation of the TFNHP and will incorporate a framework to demonstrate how Health Authorities and First Nations communities will be accountable to each other for effective service delivery for First Nations families and service-users. This Cluster of work will also build capacity of First Nations to conduct and own their own research on First Nations health, and as part of this goal, what indicators and measures should be used to measure First Nations health and well-being status, changes and improvements.
Research and Surveillance actions arising from the TFNHP revolve primarily around three key objectives:
- Promoting health research and surveillance that is in keeping with First Nations values and traditions.
- Developing other wellness performance indicators and measures that reflect First Nations practices and that promote health through cultural traditions.
- Providing stakeholders and partners with a complete picture of First Nations health.
Some of the key issues and priorities that have been articulated by First Nations (through various reports and forums) in the area of Research and Surveillance are:
- There is a need to develop new ways of monitoring progress. Evaluation needs reflect community needs; not top-down accountability requirements for programs and services designed at a national level.
- There is a need to proceed respectfully and effectively to conduct research and surveillance activities, gather and disseminate information; and to do so in such a way as not to be burdensome to First Nations communities.
- Health status reports need to be interpreted with communities and for communities so as to assist them in their planning.
- The principles of OCAP need to be agreed upon and implemented by all parties –this should be inherent in the new Tripartite Agreement.
- Communities would like to increase their capacity to collect their own information—respecting the need for privacy, dealing with ‘survey fatigue’ as well as continuing to respect the importance of oral tradition.
- First Nations communities would like more research training and tools in order to develop community research capacity. FN research policies and programs are needed.
- A FN Research Centre of Excellence is desirable.
- Research that is being conducted needs to demonstrate its relevance to FN communities. Results of research need to be disseminated to communities to assist them with their health planning.
- Communities see the importance of using a variety of wellness indicators to create a complete picture of FN health.
- Community health plans need to drive community research and surveillance activities.
Some First Nations communities are well on their way to developing the capacity to conduct meaningful community-based research, while other communities are facing challenges that prevent them from taking steps forward. Whatever a community’s situation, new supports in the area of research and surveillance will suggest the way in which the First Nations in B.C. can prepare for their new responsibilities and enable improved decision making regarding the health of their people. It will also guide the development of infrastructure and capacity for research and surveillance support.
Additionally, work in this area will provide direction to the development of the reporting mechanisms and processes that are needed to support First Nations and demonstrate accountability to action items and commitments made in the TCA: TFNHP.
The Tripartite Data Quality Sharing Agreement (TDQSA) and the First Nations Client File (FNCF): Frequently Asked Questions
- When was the Tripartite Data Quality Sharing Agreement (TDQSA) signed?
- Who are the parties to the Agreement?
- Why do we need it now?
- What is the purpose of the TDQSA?
- How are First Nations in BC involved in the Agreement?
- What data will be shared?
- What is the First Nations Client File (FNCF)?
- What data can be matched against the FNCF?
- Who has access to the data?
- How will the data be protected?
- If I am a member of one of the organizations that is a party to the Agreement, how do I access data?
- If I am a member of First Nations community in BC, can I access data?
- How long will it take to access data?
- Once I have the data, how can I use it?
- How can I get more information about the TDQSA and the FNCF?
The TDQSA was signed on April 16, 2010.
First Nations Health Council (FNHC), Canada and BC are parties to the Agreement. The Agreement was signed by the FNHC, the First Nations Inuit Health Branch (FNIH)--BC Region (Health Canada), and the British Columbia Ministry of Health.
The Tripartite First Nation Health Plan outlines (2007) a vision where First Nations in BC will be more fully involved in decision-making regarding the health of their people. As recently agreed upon by the Tripartite Partners, a new First Nations Health Authority will soon be developed.
This plan builds on the Transformative Change Accord: First Nation Health Plan which currently has 36 action items. Acting on these items will assist in bridging health gaps between the British Columbia general population and the First Nations population. One of the action items is to renew the Tripartite Agreement between Health Canada, the Province of BC and First Nations, so that First Nations health information is shared. The signing of the TDQSA meets the terms of this commitment.
By signing the Agreement, FNHC, Canada and BC have agreed to cooperate in developing the capacity for BC First Nations in the area of health information governance. The implementation of this Agreement will lead to improved data access for the three parties (the Tripartite Partners) and promote meaningful health research and timely population health surveillance for First Nations in BC.
The Agreement recognizes that improving this capacity will allow First Nations in BC to make decisions regarding why, how and by whom health information is collected, used and shared for research, surveillance, evaluation and planning purposes.
Since the spring of 2007, FNHC has been actively involved in the preparation and implementation of the Agreement. Its structure and content include First Nations perspectives on information about their peoples, and ties these views to principles of self-determination and preservation of culture.
A Tripartite Committee has been established to administer and to coordinate all data access activities. The First Nations Health Society (the operational entity of the First Nations Health Council), the Government of Canada and the Government of British Columbia are equally represented on this committee. Access to First Nations health data produced within the context of this Agreement will be determined by consensus of all Parties and based on First Nations health priorities.
The Agreement sets the basic framework for sharing the data. Currently, there are three datasets being linked in order to support measurement of population health (including seven performance indicators identified in the Tripartite First Nations Health Plan): (1) the British Columbia vital statistics database, (2) the client registry of the public health insurance program (Medical Services Plan, MSP) of British Columbia, and (3) the Indian Registry (IRS) administered by Aboriginal Affairs and Northern Development Canada [(AANDC), formerly Indian and Northern Affairs Canada (INAC)]. Following this initial linkage, the Tripartite Committee will explore the possibility of carrying out other linkages to support priority areas of interest.
The First Nations Client File (FNCF) is the data file containing the ‘linkable’ identities of First Nations clients in BC. This data file consists of the identities of registered First Nations (Status Indians) living in the Province and their entitled children. A memorandum of understanding (MoU) between the BC Ministry of Health and Canada’s Department of Aboriginal Affairs and Northern Development allows Indian Registry information to be received annually. The creation of the FNCF is authorized by the TDQSA and is achieved through linkage of Indian Registry information and the Client Registry of the Public Health Insurance program of British Columbia (BC Medical Services Plan, MSP). The MoU and the TDQSA authorize the FNCF to be used in a process of record matching, involving Ministry of Health administrative data on health, or BC Vital Statistics Agency data on vital events, or other public health or health research data, to produce First Nations Client File (FNCF) Data.
FNCF Data, either aggregated or record-level data, may be generated through data linkages with the FNCF and other Ministry of Health administrative databases or public health data. The database used would depend on the purpose of the data matching (e.g., for population health surveillance, public health practice, program evaluation, or to answer a specific research question). Possible databases for data linkage include, but are not limited to: Discharge Abstract Database (DAD), Registration and Premium Billing (R&PB), Diabetes Surveillance System, Pharmanet, BC Reportable Communicable Disease data or the BC Cancer Registry
Each data request/subsequent linkage will be vetted and approved by the Tripartite Committee. The Ministry’s Data Steward is a member of this Committee.
Information for external research requests may require disclosure of personal information in an anonymous form. In this case, an ISA would be created between the researcher and the Ministry of Health Data Steward to ensure ethics reviews have been complete, and that the information will be stored in a secure location.
Ultimately, any interested party (e.g. First Nation, government department and agency or university researcher,) will be able to request access to data sets created pursuant to this Agreement. All requests will be screened and reviewed by the Tripartite Committee in accordance with established, transparent criteria. Processes for internal and external data access requests are still being developed.
The Parties to the Agreement recognize that current capacity of First Nations communities for managing this work is limited. The Agreement designates the BC Ministry of Health as the interim Data Steward, responsible for the data (FNCF and linked datasets), until a First Nations governance entity has the capacity to become a data steward. First Nations health and personal information will be used appropriately according to applicable provincial and federal privacy legislations and for the unanimously agreed upon purposes only.
Parties to the Agreement can request data by filling out a data access request and submitting it to the Tripartite Committee. The request for data will be subject to Committee review.
When communities decide that they would like to request data, they will have to submit what is called a “Data Access Request”. This new process for First Nations communities requesting data is not yet in place. Soon communities will be able to submit these requests to the First Nations Health Society, who will then submit their requests to the Tripartite Committee on their behalf.
It is difficult to estimate how long it will take for data access to be granted. However, individuals or groups submitting requests for data should make their requests months in advance of the date on which the data would be required.
Use of the data is subject to the terms of an Agreement created for a specific data access request. The Agreement outlining the use of the data would reflect this specific data request. This means that data provided could be used only for the purposes for which it was intended, and as communicated in the current data access request. Use of the data in other ways would be subject to an additional data access request.
Additional information will be made available on the FNHC website (http://www.fnhc.ca). This information includes a data dictionary and an FNCF Framework, outlining the overall context, history and purpose of the FNCF, as well as answers to other questions applicants may have regarding its use.