NDSS - NDSS Description - The Governance Structure

The Governance Structure

The NDSS governance structure includes a multi-stakeholder Steering Committee, several working groups, Aboriginal community groups, national coordination and technical support based at Health Canada, and technical staff within each province and territory.

Steering Committee

The Steering Committee is the main decision-making body of NDSS. The Steering Committee reviews all NDSS activities, including recommendations by working groups, and coordinates the publication and dissemination of information products directly resulting from NDSS activities. This body also acts as gatekeeper for NDSS national data, determining under what conditions NDSS-related data are to be made available to partners and third parties, with appropriate input and direction from data originators and custodians.

Any private-sector sponsors of NDSS may have observer status on the Steering Committee but do not have voting rights.

Steering Committee membership

Provincial/Territorial Governments
Yukon
Northwest Territories
Nunavut
British Columbia
Alberta
Saskatchewan
Manitoba
Ontario
Quebec
New Brunswick
Prince Edward Island
Nova Scotia
Newfoundland and Labrador

Aboriginal Groups
Assembly of First Nations
Congress of Aboriginal Peoples
Inuit Tapiriit Kanatami
Métis National Council
National Aboriginal Diabetes Association

Non-Government Organizations
Canadian Diabetes Association
Canadian Institute for Health Information
Canadian Institutes of Health Research
Diabetes Council of Canada

Federal Government
Health Canada - Centre for Chronic Disease Prevention and Control
Health Canada - First Nations & Inuit Health Branch
Statistics Canada

Academia/Clinicians (2)

NDSS Working groups

Six working groups meet independently as needed and report to the NDSS Steering Committee. Working group activities and responsibilities are presented below.

Working groups and areas of responsibility

External Management Working Group

• guides interactions with key external stakeholders
• oversees efforts to obtain non-federal funding
• manages all other aspects of public relations
• developed agreements between governments for data activities
• developed a duality of interest policy
• developed guidelines for fundraising and sponsorship

Data Access and Publications Working Group

• develops policies around conditions of NDSS data access, ownership, and publication
• develops an annual publishing plan

Aboriginal Diabetes Working Group

• promotes the development of the Aboriginal component of NDSS
• provides technical leadership
• provides guidance in relation to Aboriginal data ownership, access, and privacy
• guides the development of a Memorandum of Understanding (MOU) between Aboriginal partners, respective provinces/territories and Health Canada

Validation Working Group

• advises the NDSS Steering Committee on standardization of the surveillance case definition
• determines which variables are to be collected
• decides on methods to be used for database validation

Scientific Working Group

• provides support and advice to the Steering Committee on research initiatives/approaches to improving diabetes surveillance and analysis of NDSS data
• focuses on the state-of-knowledge of diabetes

Technical Working Group

• focuses on the methods and algorithms for data development and programming
• is responsible for the evolution of the NDSS software
• translates into practice the scientific ideas proposed by the validation and scientific groups
• fosters innovations for generating improved data products

Technical Consultants

• responsible for the implementation of the NDSS software and hardware
• documents the unique characteristics of the provincial/territorial databases

Partnerships

Partnerships are central to the NDSS, which has set a number of precedents in this area. Agreements are in place with some Aboriginal groups, the Canadian Institutes of Health Research, Health Canada, and the provinces and territories.

During 2000 to 2002, Health Canada and each of the 10 provinces and 3 territories signed Memoranda of Understanding (MOUs), which set forth the terms for administering federal funding for NDSS under the direction of the Steering Committee and through Health Canada's Operating and Maintenance (O&M) financial mechanism. The form of the MOUs is contained in Appendix E.

Three-way partnership activities among Aboriginal groups (First Nation, Métis, Inuit or other Aboriginal people in rural and/or urban locations), Health Canada and the respective provincial or territorial health ministry began in 2001. So far, MOUs have been signed in two regions - all First Nations in British Columbia and those in one area of Quebec.

Responsibilities

Health Canada

Under the MOUs, Health Canada agrees to provide the resources needed to coordinate NDSS activities nationally. These include, but are not limited to, monitoring of national NDSS-related staff, infrastructure support of national NDSS-related personnel, participation on committees and working groups as appropriate, coordination of standardized data extraction and linkage, and establishment and maintenance of the central database of aggregate data from the provincial/territorial/Aboriginal partners. Coordination also involves liaising with the various working groups, providing secretariat support, and promoting a coordinated work plan. In addition, Health Canada liaises with non-governmental partners with regard to private-sector funding for activities approved by the Steering Committee.

Provinces and territories

As signatories to the Memorandum of Understanding, all 13 provinces and territories are responsible for administering NDSS activities in their area, notably the maintenance of required software and the transfer of aggregate data to Health Canada. Provinces and territories also monitor regionally located NDSS-related personnel, provide infrastructure support of regional NDSS-related personnel, and participate on committees and working groups as appropriate. Provinces and territories are responsible for submitting resource allocation information for each year to the Steering Committee.

Aboriginal groups

The Aboriginal partners in NDSS have several roles. Initially, Aboriginal partners facilitate identification of their members in NDSS datasets prepared by the provinces and territories. Subsequently, Aboriginal partners contribute knowledge about and network within their membership to support data interpretation, use of appropriate communication styles, and dissemination. Aboriginal partners also anticipate a leadership role in applying NDSS findings to plan, implement, and evaluate diabetes strategies and to develop policy.

Guidelines

Duality of interest

Within the context of membership on the Steering Committee, a situation involving duality of interest may arise in two ways: first, if a member has the opportunity to influence the business decisions of the Steering Committee in a way that could lead to personal financial gain for the member or his/her family; and second, if a member's interests are opposed to the interests of the Steering Committee.

Disclosure of duality of interest is an agenda item for all meetings, and such disclosures are recorded in the minutes. A member shall not vote on, approve or recommend approval of a transaction or contract with which he or she is associated. Therefore, members with a conflict of interest are required to absent themselves from the meeting during discussion of any items pertaining to the conflict.

Fund-raising and sponsorship

A unique aspect of NDSS is the opportunity for private-sector sponsorship. One of the roles of the Canadian Diabetes Association (CDA), a non-governmental founding partner, was the mobilization of private sector sponsorship, most notably that of GlaxoSmithKline Inc. in 1999.

Principles for fund-raising have been established to ensure an open and transparent process. Private sponsors have no influence on the decisions and activities of NDSS, and cannot directly benefit from public knowledge generated by NDSS. Eligible sponsors are required to provide long-term commitment and to have an appropriate fit between NDSS and corporate business priorities.

Data access and publication

This policy outlines the procedures believed necessary to process research requests efficiently while ensuring both consideration of the public interest and full compliance with legislation. The policy covers data collected, linked and/or analyzed with the assistance of NDSS resources. Data and data products that can be accessed are unpublished aggregate data that reside at Health Canada, person-level data that reside at provincial and territorial sites, and NDSS programming codes.

The guidelines for data access cover

• guiding principles (e.g. that the provinces, territories, and Aboriginal groups must be in agreement with any and all uses of their respective data);
• uses of data and products;
• ethical review for access;
• requirements to request access;
• disclosure (i.e. before release, reports containing any data requested through NDSS, or reports generated using NDSS data will be reviewed);
• protection of privacy and confidentiality, and
• destruction.