Terms of Reference

Statement of Need

In early 2016 seven First Nations health service organizations representing 68 Northern Ontario First Nations communities came together in recognition of a common need. The communities we serve do not have access to timely, comprehensive, high quality health-related information specific to our communities. This lack of information leaves First Nations leadership unable to detect emerging issues, assess trends in health status, conduct evaluations, or make evidence informed planning, programming and policy decisions.

Our alliance has grown to eleven First Nations governed health services organizations serving 78 communities. We work in partnership to build shared capacity to generate local information to use in evidence informed decision making in the region. The alliance submitted a Health Services Integration Fund application to establish Mamow Ahyamowen as the Northern Ontario Indigenous Health Information Partnership. This Terms of Reference documents the governance arrangements for Mamow Ahyamowen.

Vision

To be a trusted Northern voice providing the health information our communities need to achieve health equity.

Mission

We are First Nations communities, Tribal Councils and Health Authorities in Northern Ontario who follow a culturally respectful path to use available data resources so we can share meaningful information to support evidence-based decision making for health and wellbeing.

For more information see: Mission, Vision & Values.

Goals

  1. Use data to develop and sustain alliances to build shared voice to strengthen community wellbeing
    • Maintain strong communication within Mamow Ahyamowen
    • Continue to share our progress and results with external partners to support development of alliances
  2. Measure the health and determinants of health our communities experience
    • Measure health outcomes and access to health services
    • Measure social determinants of health and how they relate to and influence health outcomes
    • Identify health inequities that need to be resolved
  3. Build community capacity for using data to achieve health equity
    • Increase data literacy at the community level
    • Support communities to use data in funding proposals and advocacy work

Membership

Each member of the alliance has two named representatives to the Steering Committee. Both representatives are encouraged to attend as many Steering Committee meetings as possible. When decisions are made each organization will be represented by one individual with priority given to the primary representative. Organizations may update their named representatives as required from time to time.

Steering Committee Members

Scope

This alliance does not create a new legal entity. It is designed as a mechanism to facilitate collaboration, learning, and pooling of resources. This alliance was established to conduct public health epidemiology. The alliance will prioritize surveillance and population health status reporting that supports First Nations communities and organizations with their program planning, implementation, and evaluation needs.

From time to time the alliance may engage in advocacy where gaps are identified that are important to the success of the alliance but may not be the direct responsibility of the alliance. For example, the alliance may advocate for organizations to be funded so that that all communities have electronic health information tools in their health centers and nursing stations while recognizing that funding for such tools should flow to the individual organizations along with responsibility for implementation and operation of the tools.

The alliance will strive to identify and prioritize initiatives that are of interest to all partners. At the same time we recognize that not all organizations will consider all the initiatives undertaken by the alliance to be a priority. Organizations will not be compelled to participate in any specific initiatives.

Principles and Values

  • OCAP®(Footnote 1): We recognize the importance of the First Nations principles of Ownership, Control, Access and Possession and we will act in accordance with these principles.
  • Respect: Data represent people’s stories. We will treat these stories with respect. This includes being respectful of privacy and being respectful of how reports are developed and disseminated.
  • Accountable: We work for the 75 First Nations that make up our alliance. We are accountable to their leadership and our decision making will be guided by their needs and priorities.
  • Innovative: We recognize that the information management status quo for Northern First Nations is unacceptable. We will explore new ways of producing meaningful information for our communities.
  • Collaborative: We will work together in a strong partnership. We will also seek out key organizations that we can collaborate with to bring meaningful information to our communities.
  • Credible: We will be a trusted source of health information. This means that we apply rigorous and objective methods in our work and we produce high quality products that First Nations leaders can confidently use to inform their decision making.

Roles and Responsibilities

All organizations agree to a core set of expectations. These include:

• Organizations represent the First Nations communities they serve. The most critical role of our members is to provide the voice of our communities in all our discussions and decisions.

• All organizations respect the diversity of the alliance. We embrace respectful discussion, debate, and differences of opinion as these are essential to refining our ideas and making the right decisions.

• Organizations commit to review materials that are circulated prior to Steering Committee meetings so they arrive prepared to provide constructive feedback and move alliance initiatives forward.

• From time to time working groups may be needed to develop specific deliverables. Organizations are expected to identify representatives from their organization or from the communities they serve who can participate in such working groups.

Financial Management

One or more organizations may receive funding to support the activities of the alliance at any given time. Organizations who manage funds on behalf of the alliance are expected to do so in an equitable and transparent fashion. Applications for alliance funding will be approved by the Steering Committee. The Steering Committee will then support successful applicants to deliver on the resulting contractual obligations that the funding recipient has agreed to on the alliance’s behalf. Note that this support does not compel any organization or the First Nations they represent to participate in any data analyses that were proposed unless adequate community level approval was obtained prior to proposal submission.

The organization administering the funding will receive the administrative fees associated with the funding. In turn they will use their corporate policies, procedures, and services to execute the successful funding proposal. From time to time this may include the recruitment of staff or consultants who would be managed according to the hiring organization’s policies and procedures.

Chair and Secretariat

The Project Manager shall chair Steering Committee meetings while resources permit or until such time as the Steering Committee chooses to have an alternate Chair for the meetings. The Project Manager shall also provide Secretariat services to support the day-to-day functioning of the Steering Committee for the duration of the funding term.

The Secretariat function includes preparing and circulating agendas and meeting materials in advance of Steering Committee meetings and for circulating draft minutes following the meeting. Minutes will be confirmed at the subsequent Steering Committee meeting. The Project Manager is a non-voting member of the Steering Committee. From time to time the Steering Committee may need to discuss sensitive matters. If requested by the Steering Committee the Project Manger will leave Steering Committee meetings to allow for such discussions to occur in their absence.

Decision Making

Meetings

The Steering Committee shall meet monthly at a consistent time chosen by Steering Committee members. Meetings will be block booked so Steering Committee members can book the times early in their calendars. Members may invite guests to join Steering Committee meetings. Invited guests should be introduced at the start of a Steering Committee meeting and may be asked to leave a meeting if the Steering Committee is discussing sensitive topics.

Changes to Membership

Membership may be amended from time to time. Organizations may choose to leave the alliance at any time by written notice to the Chair. New organizations may ask to join the alliance at any time. Prospective organizations may be asked to submit a letter of interest or make a brief presentation to the Steering Committee stating why they would like to participate and how they feel they can contribute to the alliance’s goals. Steering Committee members will review any statements of interest at a subsequent meeting and must agree unanimously to the addition of new members to the alliance. New members will have the same voting privileges as existing members. The membership of the Steering Committee may include a minority of non-First Nations organizations.

Decision Making Process

The approval process related to decisions on whether and how to use First Nations data are outlined in the Data Governance section below. For other decisions the alliance will use a consensus based decision-making process. Where consensus cannot be reached the Chair may choose to hold a vote. Quorum for a vote is considered to be attendance by 50% or more of the Steering Committee organizations at the start of the meeting. A simple majority in favour of a motion will carry the motion.

Data Governance

The alliance uses an opt-in approach to determine which communities would like to participate in a data analysis exercise. Communities are provided with an analysis plan that provides information on what analysis is being proposed and how results will be communicated. This process relies on the existing governance arrangements that organizations have with the communities they serve.

All organizations recognize that individual organizations may choose not to participate in a data initiative of the alliance without expressing opposition to the initiative. The decision of an organization not to participate in an initiative will mean that none of the First Nations represented by that organization will participate in the initiative. The decision of an organization to participate in an initiative does not mean that all First Nations represented by that organization will necessarily participate. If a First Nation chooses not to participate in an initiative, then their data will not be used in that initiative. The alliance recognizes the authority of individual First Nations to control their data as outlined in the OCAP® principles.

Data governance requirements specific to any initiative will be defined in the documentation associated with the initiative. The following principles shall appear in most documentation governing the use of First Nations data:

  1. Individual First Nations will be adequately informed of the purpose of the proposed initiative and will be given the choice of whether or not they would like to participate in the initiative. This will include reviewing the agreement that governs the specific initiative. Different organizations use different methods to document such approval including Band Council Resolutions or Resolutions from Chiefs in Assembly.
  2. Steps will be taken to adequately protect individual privacy in any initiatives, analyses, or reports produced by the alliance.
  3. Results of initiatives will be reported back to participating First Nations communities.
  4. Plans for dissemination of results of any data initiatives will be clearly articulated in the agreement that governs the initiative. Changes to the proposed dissemination plan requires the unanimous approval of the Steering Committee for aggregated results. Organizations will be responsible for dissemination of any analyses at the level of the organization. Individual First Nations will be responsible for determining the level of dissemination of community level data. Organizations will be responsible for providing communities with their community level results. Permission to access individual First Nations data analyses may be sought from the individual First Nations after the analyses have been completed.

Financial Sustainability of the Alliance

All organizations are expected to monitor for new potential sources of funding to sustain the alliance. Funding opportunities often have short application periods and may require special ad-hoc Steering Committee meetings or email based review processes in order to submit a successful application.

When a potential funding opportunity is identified the Steering Committee will review the opportunity and decide whether to pursue the funding or not. If the Steering Committee decides to pursue the funding then an organization will be selected to lead the application. Typically the organization chosen to apply for the funding will be the organization that will have the greatest chance of success at obtaining and implementing the funding. Support for the final application will be sought through a Steering Committee meeting or by email prior to submission of the proposal. Attempts should be made to get approval from all organizations prior to submission.

Footnote 1: OCAP® is a registered trademark of the First Nations Information Governance Centre (FNIGC). Click here for further information.

Back to Top