The pan-Canadian Health Data Strategy: Expert Advisory Group Terms of Reference

The challenges are observed through issues with timeliness and completeness of data for health system, public health and policy decision-making; insufficient granularity of the data to monitor and understand the impact on sub populations; restrictive access to data hampering conversion of data to intelligence through analytics and research; inconsistent standards in data capture, sharing, and reporting; and a lack of identifiers to facilitate data integration and linkage required to innovate and generate deeper insights. There is a window of opportunity for collective action across provincial, territorial, and federal jurisdictions to overcome these challenges together.

Provinces, territories, and the federal government already collect a significant amount of health system, population, and public health data (herein ‘health data'). Further, data are increasingly being created and managed through private sector applications, devices, and other technologies. As COVID-19 emerged and evolved across Canada, it has been apparent that information flows and infrastructure are insufficient to meet current and emerging needs. Collectively, data are not optimally used and they could be better orchestrated to have a greater impact on and benefit for provinces, territories, Canada as a whole, and Canadians.

A pan-Canadian Health Data Strategy (pCHDS) will harness the short- and medium-term data priorities for the COVID-19 response together with the long-term approach to address the systemic issues underlying these challenges. The pCHDS will provide a path to better use of Canada's data and information while ensuring continued effective stewardship of public trust and funding in managing health data assets to improve the health of Canada and Canadians.

When implemented, the pCHDS will:

ensure there is a common understanding among data partners regarding health data priorities to guide data creation, sharing, linkage, and analysis priorities;
monitor progress towards collective health data priorities;
reduce duplication of efforts and build economies of scale across various partners;
address health data access, privacy, exchange, content, and linking standards;
highlight the rich data assets that exist across the public and private sector including provinces, territories, and the federal government and support their integration for insights and action; and,
share intelligence stemming from health data efforts.

Previous seminal frameworks and agreements have laid some important groundwork toward a pan-Canadian approach to data. Broader recognition of data challenges encountered in the context of COVID-19 presents an opportunity to revisit the idea for a pCHDS, learning from past experiences and modernizing for the current context, incorporating new thinking and learning from others. Recognizing the breadth of that challenge, it will be critical to manage the focus of the pCHDS to areas that are most impactful and valuable for Canada and Canada's health systems across care, policy, public health, and population health.

The pCHDS is the evolution of the Government of Canada's COVID-19 Testing Strategy: Data Management Pillar. Provinces and territories have agreed to work on these issues under the Safe Restart Agreement.

Date Terms of Reference finalized: December 9, 2020.

2.0 Mandate

The Expert Advisory Group (EAG) will provide broad strategic policy advice on matters relating to the development of a pCHDS to the Conference of Deputy Ministers of Health (CDMH) by winter 2022.

Specifically, the EAG will provide advice on:

strategic direction for the use of of health system, population, and public health data (including data that is privately held) to improve the health of Canada and Canadians;
principles to guide the creation, collection, storage, and use of data to achieve that direction; and
a practical and phased roadmap for the implementation of measures to sustainably address areas of greatest opportunity and impact.

The EAG will also provide advice on short- and medium-term priorities as part of Canada's response to COVID-19, as requested by the Chair.

The EAG's role is to provide advice and make recommendations. The EAG will have no decision-making authority, policymaking or investigatory responsibilities. Advice will be provided by the Chair of the EAG to the Public Health Agency of Canada (PHAC), which acts as the pCHDS Secretariat.

The Chair of the EAG is accountable to the CDMH via the Deputy Minister's Committee on Data Management.

3.0 Membership

The EAG is chaired by the Federal Health Portfolio's Health Data Champion, Dr. Vivek Goel. Members of the EAG are recruited through a targeted nomination process led by the Federal Data Pillar Assistant Deputy Minister (ADM) Committee (DPAC). The goal of this process is to ensure that together, the EAG members have a range of knowledge, expertise, and experience, reflect a variety of perspectives and represent diverse geographic areas. PHAC promotes diversity and inclusiveness in EAG membership.

The EAG will have no more than 20 members, including a Chair. DPAC, in consultation with the Chair, may adjust the number of members from time to time to ensure the appropriate range of knowledge, expertise, experience, and perspectives. Membership is composed of renowned experts across diverse perspectives, expertise, and lived experience with health, population and public health systems data.

Membership will have knowledge, expertise, and experience in the following areas:

public health, health systems, and population health
acute care, primary care, and pharmacy
health policy, research, and academia
technology, data, and analytic management, and governance
public engagement and community leadership
health data regulation

3.2 Term of Membership

Members are appointed by DPAC for the period of December 2020 to winter 2022. Membership will be reviewed on a regular basis by DPAC to ensure a range of expertise, experience, and perspectives, and continuity of membership on the external advisory body.

3.3 Resignation process

A member may resign from the EAG by providing notice to the pCHDS Secretariat and Chair. It is preferable for a member to provide 14 days' notice of the intent to resign. The notice should state the effective date of the resignation.

3.4 Reasons for termination

DPAC, in consultation with the Chair, may end a member's appointment for a variety of reasons including: the member's term is complete; the mandate of the EAG has been completed; the EAG's mandate has changed, thus requiring a different membership, etc. DPAC may also end an appointment if a member has not acted in accordance with the Terms of Reference. Examples include if a member breaches his/her confidentiality obligations, or misses three consecutive meetings without a satisfactory reason. The pCHDS Secretariat will notify a member in writing, on behalf of DPAC, about the termination and will provide the member the reason why the appointment is being concluded and the date of termination.

4.0 Roles and Responsibilities of Members

4.1. Members

Members of the EAG have a responsibility to give their best advice. To do so, they must consider all input received that is related to the mandate of EAG.

Other responsibilities include to:

be available and prepared to actively participate in EAG meetings, including Internet meetings, ad hoc meetings, email exchanges, conference calls, and videoconferencing;
be available and prepared to attend a public input activity or public consultation related to the EAG's mandate, if requested and appropriate;
participate in the discussions on the EAG's recommendations, advice, or report(s);
carry out agreed actions set by the EAG;
make recommendations as a collective group and hold joint responsibility for actions taken by the EAG, even in their absence. They are responsible for ensuring that all discussions and recommendations are made in the best interests of the EAG's mandate and that their role is carried out effectively;
maintain the confidentiality of EAG meetings, to support open conversation; and
provide guidance through plenary meetings and ad-hoc working groups / sub-committees that are formed between plenary meetings.

4.1.2 Ex-officio Members

DPAC or the EAG Chair may also appoint ex-officio members who act as representatives of their organization and express the opinions of their organization. Ex-officio members may include representatives of provincial, territorial, or federal government, community organizations, associations, and industry. These members would be recommended by their organizations for a specific period of time, and the organization may rotate the member representative.

4.2 Chair

The Chair has additional responsibilities, including to:

chair EAG meetings;
provide input to DPAC on the selection of EAG members;
facilitate a full and frank discussion among EAG members in fulfillment of the EAG's mandate, including in formulating its recommendations, advice, or report;
seek consensus on the EAG advice among all Members, and if there is not agreement, ensure that this diversity of opinion is noted in the meeting records or report;
ensure the preparation of the meeting records or report and the delivery of the external advisory body's advice;
set the agenda of the EAG, in collaboration with the pCHDS Secretariat, and DPAC;
ensure matters of the EAG, including issues raised by the EAG, are dealt with in an orderly, efficient manner; and
provide advice in the form of a (written or verbal) report, on behalf of EAG, to DPAC, Deputy Ministers Committee on Data Management, and other relevant committees as required and appropriate.

4.3 pCHDS Secretariat

The pCHDS Secretariat is the administrative liaison between EAG members and DPAC and is a resource for Members on business related to the mandate of the EAG.

The pCHDS Secretariat provides DPAC with leadership and strategic advice in the management of the EAG and works closely with the Chair and other personnel. In addition, the responsibilities of the secretariat include to:

coordinate the member appointment process;
coordinate the preparation of materials for EAG members and meetings, observers, and others, and coordinate the timing of their distribution;
assist with the work of the EAG, as required;
provide administrative support to EAG members relevant to the groups' work;
support public access to information regarding the advisory body, as appropriate;
act as a liaison between DPAC and the EAG, including seeking input from scientific, technical, programs, and policies subject-matter experts;
assist the Chair in carrying out the Chair's responsibilities;
carry out any additional duties as appropriate to support the EAG, including a risk assessment and mitigation strategies;
undertake any tasks delegated to it by DPAC or the EAG;
coordinate media inquiries related to the EAG with Communications professionals;
report to DPAC on the activities of the EAG;
assist with a review or audit of the EAG, as required;
provide plenary meeting materials in advance of the meeting;
respond to issues raised by Members in a timely manner, escalating to the Chair or DPAC as appropriate; and
provide meeting minutes of plenary and working group meetings following the meeting.

The pCHDS Secretariat function will be provided by PHAC.

4.5 Affiliations and Interests

EAG members are expected to conduct themselves in an appropriate manner, i.e., the use of their positions cannot be reasonably construed to be for their private gain or that of any other person, company, or organization. Members must refrain from any real or perceived conflict of interest.

EAG members are expected to complete a “Summary of Expertise, Experience and Affiliations and Interests Declaration Form”.

The Chair may check on real or perceived conflicts of interest as part of the regular business of the EAG, as appropriate.

4.6 Confidentiality

The Chair and Members of the EAG, as well as any observers or invitees if applicable, will be required to sign confidentiality agreements. EAG Members are expected to hold in confidence and not disclose any confidential information obtained as a result of their participation on the EAG, except as permitted under the terms of the confidentiality agreement.

The pCHDS Secretariat will mark information according to the level to which it is protected under the Policy on Government Security.

The Chair will ensure that everyone participating in the meeting, telephone discussion, email exchange, or in another form of communication has received clear instructions on the confidentiality of the proceedings.

4.7 Security clearance

Based on the mandate of the EAG, it is not required that members undergo security clearance.

If the mandate or approach to the EAG changes, all members may be required to undergo a security clearance, based on the reliability status level of the EAG.

4.8 Legal Assistance and Indemnification

PHAC undertakes to provide volunteer members with protection against civil liability provided the volunteer member acts in good faith, within the scope of the EAG mandate, does not act against the interests of the Crown and does not have available to him/her such protection.

The volunteer Member shall give prompt notice to PHAC of any claim, action, suit or proceeding brought against the member. If the volunteer member is eligible for protection against civil liability, PHAC must consent to the legal counsel selected to represent the volunteer member and any associated costs, or PHAC will not provide coverage to defend the claim, action, suit or proceeding. PHAC will, at its own expense, participate in the conduct of the defence of any such claim, action, suit or proceeding, and any negotiations for the settlement of the same. PHAC shall not be liable to indemnify the member for payment of any settlement, unless it has consented to the settlement.

4.9 Travel and expenses

Members serve as volunteers and are not remunerated for their services. Members will be reimbursed for expenses incurred on approved travel to attend EAG meetings, such as transportation and accommodation, in accordance with Government of Canada policies, including the Treasury Board's Directive on the Management of Expenditures on Travel, Hospitality and Conferences.

5.0 Media and communications

All media requests related to the EAG should be directed to the pCHDS Secretariat who will work with PHAC/Health Canada (HC) Communications. All media responses will be coordinated by PHAC.

When appropriate, PHAC may request the Chair or a member of the EAG to address a question raised by the media. The media request must first be directed to the PHAC/HC Communications or the pCHDS Secretariat, and PHAC must decide to ask a member of the EAG to respond to the question. PHAC will provide guidance to the member on how to address the question.

Members must avoid expressing any opinions on behalf of the EAG or PHAC, or providing information that would be considered Confidential Information under the Confidentiality Agreement. If asked by the media to discuss the EAG or discuss how the EAG has examined certain issues, committee members should refer the media to PHAC/HC Communications or the pCHDS Secretariat.

6.0 Management and Administration

6.1 Transparency

PHAC is committed to transparency as an operating principle. Transparency of the EAG is served by posting EAG materials, with confidential and personal information removed, on the PHAC or equivalent website. These materials include the following:

Terms of Reference
Membership
Biographies of members
Statement that the member has completed a Confidentiality Agreement form
Report(s) from the EAG as appropriate.

6.2 Meetings

Meetings will take advantage of virtual collaboration tools where possible (e.g., videoconferencing and teleconferencing).

6.2.1 Meeting frequency

The EAG is expected to hold plenary meetings on an at least quarterly basis through to delivery of the pCHDS. It is likely that in early stages, meetings will be more frequent.

Between plenary meetings, members will be asked to participate in working groups to perform deeper analysis and create advice on specific topics (such as issues associated with the short- / medium-term response to COVID-19, data access & privacy, or interoperability). Frequency of those working groups will be determined by working group members, in consultation with the Chair.

These working groups may add individuals with specific expertise to support their work.

6.2.2 Meeting Attendance and invitations

Meetings may be limited to members and ex-officio only or may be opened to other staff, presenters, and observers by invitation. The pCHDS Secretariat or the Chair will send meeting invitations.

6.2.3 Meeting agendas

The Chair, in consultation with DPAC and the pCHDS Secretariat, sets the meeting agenda, including identifying questions and issues for discussion. The pCHDS Secretariat will strive to canvass for relevant agenda items in a timely manner, and at least two weeks before regularly scheduled meetings.

Members generally receive the agenda and briefing material one week in advance and presentations 3-4 days before a meeting.

6.2.4 Quorum, Recommendations and Voting

The EAG must have quorum when making recommendations or providing advice to the Chair. Quorum is one half of the members plus one; Chair must be present to have quorum.

The EAG is encouraged to reach a consensus in providing advice whenever possible. When a consensus is not possible, the meeting minutes will reflect the diversity of opinions.

6.2.5 Deliberations and Reports

Advice from the EAG will be provided by the Chair who will provide advice directly to DPAC, Deputy Ministers Committee on Data Management, and other committees as required and as appropriate. Periodic updates will be provided by the pCHDS Secretariat in the form of meeting minutes.

Meeting minutes will summarize the proceedings to effectively reflect the advice offered. Remarks are not attributed to individuals in the minutes or records of proceedings.

Meeting minutes will be prepared by the secretariat and circulated to members for review and confirmation.

The EAG, through the Chair and pCHDS Secretariat, will create report(s) summarizing its advice.

Summaries of meeting minutes, will be posted on PHAC's website as appropriate.

6.3 Review

DPAC and the Chair will review the mandate, activities, terms of reference, and relevance of the EAG annually to ensure that it continues to meet ongoing needs and/or if it has completed its mandate.

DPAC retains the prerogative to disband the external advisory body following any such review.

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Date modified:: 2021-03-25

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