Section 3: Evaluation of the surveillance function at the Public Health Agency of Canada – Findings relevance

3. Findings – relevance

3.1 Continued need

Finding 1. There is a continued need for public health surveillance.

The literature characterizes public health surveillance as “the cornerstone of public health practice”^{Footnote 38} and “the foundation for decision making in public health.”^{Footnote 39} Donald A. Henderson, who led the successful campaign to eliminate smallpox, said that “surveillance serves as the brain and nervous system for programs to prevent and control disease.”^{Footnote 40}

All key informants, both external to and from within the Public Health Agency, agreed that there is a continued need for public health surveillance to enable informed decision making about public health interventions and actions required to respond to the following:

• emergence of new health threats
• re-emergence of some diseases that were believed to be on the decline
• global pervasiveness of chronic disease
• outbreaks of foodborne illness (e.g. listeriosis) and the potential for a pandemic (e.g. H1N1).

Public health surveillance information provides the evidence to support public health action in the prevention and management of communicable and non-communicable diseases. Investments in surveillance can lead to early detection of local epidemics when control is most effective, less costly and involves less loss of life. It can lead to the detection and prevention of diseases that can be cured easily and at low cost, such as tuberculosis and most sexually transmitted infections. Because the treatment of chronic non-communicable diseases, such as heart disease and diabetes is costly, prevention is a key public health strategy. Prevention and control of these diseases require surveillance to identify associated behaviours and risk factors.

The continued need for public health surveillance was further illustrated by the identification of gaps in Canada’s public health surveillance system following the severe acute respiratory syndrome (SARS) outbreak in 2003. Three independent investigations^{Footnote 41,Footnote 42,Footnote 43} concluded that surveillance systems did not adequately communicate or provide consistent information to public health professionals, preventing timely and accurate detection and response to disease threats. The Naylor Report^{Footnote 44} noted that risks associated with the gaps in public health surveillance compromise the ability to anticipate, prevent, identify, respond to, monitor and control diseases and injuries, and compromise the ability to design, deliver and evaluate public health activities.

More recently, the 2009 Report of the Independent Investigator^{Footnote 45} into the 2008 listeriosis outbreak, recommendation 22, Chapter 5, called for improvement of surveillance by federal, provincial and territorial governments and the continued use and support of surveillance and monitoring systems. In the same year, a report of the Standing Committee on Agriculture and Agri-Food recommended that the government enhance national surveillance of foodborne illness.^{Footnote 46}

3.2 Alignment with the priorities of the Government of Canada and the Public Health Agency

Finding 2. The surveillance activities of the Public Health Agency of Canada align with the priorities of the Government of Canada and with the strategic outcome and priorities of the Public Health Agency.

3.2.1 Alignment with the priorities of the Government of Canada

Although not the primary target of federal government budget investments, evidence from the document review with respect to financial allocations indicates that surveillance is an important component of the program funding priorities of the Government of Canada.

Table 5 provides examples of program funding allocations to assist the Public Health Agency in meeting public health challenges that include a surveillance component.

3.2.2 Alignment with the strategic outcome and priorities of the Public Health Agency

Surveillance plays a role in supporting the achievement of the Public Health Agency’s strategic outcome, “Canada is able to promote health, reduce health inequalities and prevent and mitigate disease and injury”.

The role of public health surveillance information in prevention, mitigation and control strategies for infectious and chronic disease is reflected in a statement by the Minister of Health, in the preface to the Public Health Agency’s 2011-12 Report on Plans and Priorities:

“Comprehensive and timely surveillance information is fundamental in strengthening public health in Canada. The Agency will leverage this information to develop, in concert with provinces, territories and other key stakeholders, targeted prevention, mitigation and control strategies for infectious and chronic diseases.”^{Footnote 48}

A common theme throughout Public Health Agency documents is that public health surveillance is an organizational priority and that it plays an important role in supporting public health action. The following evidence further points to the alignment of surveillance with the priorities of the Public Health Agency:

• The Public Health Agency’s Executive Committee reaffirmed surveillance as one of the Public Health Agency’s top six strategic priorities at a priority-setting retreat in January 2011.
• The Public Health Agency’s Reports on Plans and Priorities from 2008-09 to 2012-13 have linked surveillance to operational priorities. The 2012-13 Report on Plans and Priorities^{Footnote 49} identified strengthening the capacity for public health surveillance as an activity under Priority 3: Enhancing public health capacity.
• Objective 2 of the 2007-2012 Public Health Agency of Canada Strategic Plan to “ensure actions are supported by integrated information and knowledge functions”^{Footnote 50}, is supported by public health surveillance through the generation of data that leads to the production of accurate and timely health information. This information supports the Minister of Health and public health decision makers in developing public health policies and actions that promote and protect the health of Canadians.

3.3 Alignment with federal roles and responsibilities

Finding 3. The Government of Canada and the Public Health Agency of Canada have a clear mandate to carry out public health surveillance.

All lines of evidence point to a clear federal role in public health surveillance.

Public health in Canada is a shared responsibility among federal, provincial, territorial and local governments. The federal mandate to carry out surveillance is derived from the powers and obligations conferred on the Government of Canada by a number of acts, including the Department of Health Act^{Footnote 51} and the Public Health Agency of Canada Act^{Footnote 52}. Appendix F provides a summary of the federal, provincial and territorial division of powers and legal authorities for public health and public health surveillance.

The Department of Health Act gives the Minister of Health a broad mandate to protect Canadians against health risks and the spread of disease. The Minister’s duties, functions and powers include investigation and research into public health, including the monitoring of diseases and, subject to the Statistics Act^{Footnote 53}, “the collection, analysis, interpretation and publication and distribution of information relating to public health.”^{Footnote 54}

The Public Health Agency of Canada Act mandates the Public Health Agency, under the leadership of the Chief Public Health Officer and in collaboration with its partners, “to contribute to federal efforts to identify and reduce public health risk factors and to support national readiness for public health threats.”^{Footnote 55} The Public Health Agency of Canada Act recognizes that public health surveillance is one of the public health measures that the Government of Canada undertakes, through the various programs and activities carried out by the Public Health Agency.

The Department of Health Act and the Public Health Agency of Canada Act do not expressly deal with the collection of personal information. However, under Section 4 of the Privacy Act^{Footnote 56}, the Public Health Agency can collect personal information for the purpose of carrying out programs and activities to assist the Minister in exercising her powers, duties and functions relating to public health, if the collection relates to that program or activity.

The Government of Canada also has international obligations related to surveillance. For example, it is a signatory to the International Health Regulations^{Footnote 57} which is a binding international legal instrument that requires that a public health surveillance system be set up in Canada.

The 2008 May Report of the Auditor General of Canada indicated that “threats from infectious diseases are rising, and Canadians expect the Agency to ensure that it is adequately monitoring important public health events to minimize the potential risks to their health and the economy.”^{Footnote 58} Beyond the Auditor General’s support for a robust federal surveillance capability, a wide range of reviews and other federal reports lend further support to the argument for the need for a federal role in public health surveillance. Starting with the Lalonde report in 1981, A New Perspective on the Health of Canadians^{Footnote 59}, many reports have raised the importance of national health surveillance, including the Final Report: Commission of Inquiry on the Blood System in Canada (Krever report)^{Footnote 60} in 1997, Building on Values: the Future of Health Care in Canada (Romanow report)^{Footnote 61} in 2002 and Reforming Health Protection and Promotion in Canada: Time to Act (Kirby report)^{Footnote 62} in 2003.

Finding 4. The Public Health Agency’s mandate and vision for surveillance are not well understood.

While the federal role in public health surveillance has been expressed in numerous reviews and reports, the Public Health Agency’s mandate in surveillance is not well understood. Some Public Health Agency key informants pointed to the Public Health Agency of Canada Act as the expression of the Public Health Agency’s mandate in surveillance, but others argued that the powers under this Act are too broad to provide much definition of the public health surveillance role. Some Public Health Agency key informants anticipated that the current transformation initiative affecting surveillance activities will improve communication within the Public Health Agency regarding its surveillance mandate.

In addition to a mandate, a vision for national surveillance was laid out in the Public Health Agency’s 2007 Surveillance Strategic Plan (Section 2.2)^{Footnote 63}. Most of the Public Health Agency surveillance managers and staff interviewed were aware of the Public Health Agency’s strategic vision for surveillance, but one-third of Public Health Agency survey respondents and the majority of provincial and territorial key informants were not aware of it.

Some Public Health Agency key informants offered an explanation for this lack of awareness of the surveillance strategic vision, suggesting that it has not been widely communicated. One of the strongest expressions of the lack of awareness and common understanding was made by a Public Health Agency key informant who said “We are all sitting around the same table playing cards, but each of us is playing solitaire.” Several Public Health Agency key informants indicated that because people are not aware of the Public Health Agency’s strategic vision for surveillance, program areas have created their own strategic visions for surveillance.

Finding 5. Provinces and territories are looking to the Public Health Agency of Canada to play a lead role, including leading a collaborative development of a national approach to public health surveillance in Canada.

Although the respective roles and responsibilities are not clear, the provinces and territories are looking to the Public Health Agency to play a lead role in public health surveillance.

The evidence in Finding 3 underscores the legitimacy and necessity of the Public Health Agency’s role in public health surveillance. However, to fulfill its role the Public Health Agency requires the active and willing participation of the provinces and territories, and the provinces and territories also have specific authorities with respect to public health surveillance. While each respects the others’ authority, the question of appropriate roles for each level of government can occasionally arise.

When asked what the roles and responsibilities the Public Health Agency should have with respect to public health surveillance, the responses from Public Health Agency managers and staff and provincial and territorial key informants aligned closely with the following roles and responsibilities identified by the Surveillance Coordination Unit during recent consultations for surveillance transformation and the 2013-2016 Surveillance Strategic Plan:

National Level Knowledge Development

• serve as the national focal point for the International Health Regulations (i.e. a national centre designated by Canada for urgent communications under the International Health Regulations)
• create national-level public health knowledge derived from provincial, territorial, other government department and non-government organization data and information sources
• provide national-level (multi-jurisdictional) data and evidence and credible information products directed to appropriate stakeholders
• identify risk factors and determinants of health to inform upstream interventions and other prevention and control measures.

Unique Expertise and Resources

• share information and knowledge with the provinces and territories about international standards, guidelines and best practices
• provide support and capacity through unique skills, expertise and resources (e.g. surge capacity, laboratory expertise, lab proficiency testing standards, testing and related activities and field services)
• identify signals for timely identification and coordinated assessment of and response to outbreaks and other events of urgent public health concern by pooling multi-jurisdictional data and scientific expertise at the national level.

Coordination and Leadership

• engage and collaborate with international partners (e.g. setting global targets, outbreak response, health threat assessment and response and lab capacity projects) to safeguard the health of Canadians
• enable joint federal/provincial/territorial processes to facilitate cross-jurisdictional information sharing and decision making
• develop, coordinate and disseminate data standards to ensure high quality data for comparison at local, national and international levels
• engage in surveillance activities with other government departments, provinces, territories, other partners and stakeholders, and share information as appropriate
• facilitate consensus on federal, provincial and territorial surveillance priorities.

The main overarching theme from provincial and territorial key informants was a desire for the Public Health Agency to assume a stronger leadership role in surveillance, including, for example, leading the coordination and development of a framework for surveillance in Canada. More than one-half of provincial and territorial key informants suggested that the shared responsibility for developing a framework should come under federal leadership, and include the development of a uniform national approach to public health surveillance infrastructure, and standardization of processes, case definitions and data standards. In discussing the need for leadership of a surveillance system in Canada, one provincial/territorial key informant stated:

“If we are going to have a surveillance system in Canada that is robust and informative and has regular products then somebody is going to have to coordinate it and be the owner and the conductor…”

In reference to the role of the Public Health Agency, the following represents an expression of the provincial and territorial expectation that the Public Health Agency assume the leadership role:

“The single statement that I would like to make clear is that PHAC could take a leadership and coordinating role and be clear about that, then the jurisdictions would gladly fall in.”

Many Public Health Agency key informants reiterated the views of provincial and territorial key informants with respect to the need for the Public Health Agency to lead the development of a consistent approach to the practice of surveillance. Some Public Health Agency key informants indicated that the Public Health Agency needed clarify its own role in surveillance within the federated context as a prerequisite to leading the development of a national framework.

Although the need to assume a leadership role was clear, key informants identified the following challenges to the Public Health Agency coordinating surveillance activities among partners:

• lack of presence of the Public Health Agency at the collective table when formulating the software requirements for public health
• informal and ad hoc agreements for data and information sharing
• lack of standardization of public health surveillance business processes, such as data standards and protocols for data gathering, custodianship, sharing and dissemination
• disparate surveillance systems across provinces and territories.

The review of other countries and the European Union noted that across the four countries studied and the European Union, national involvement in the surveillance of infectious disease is well defined. Furthermore, three of the four countries examined (Australia, Sweden and the United Kingdom) and the European Union have strong national policy environments, including the adoption of one or more of the following policy instruments related to surveillance:

• legislation to support the sharing of adequate, timely and reliable data between local/regional and national levels of government
• well-defined frameworks for the sharing of data and private health information
• intergovernmental agreements
• national public health policy statements/strategies that include surveillance or are specific to surveillance.

Importantly, the analysis highlighted three key practices with respect to the national role:

• “Greater consistency is achieved when key surveillance activities are led by a national organization and when there is a significant amount of national-level oversight in developing surveillance infrastructure and capacity.
• In general, a clearly defined governance structure encourages a broader data sharing framework and early response network, which can help with the timely identification of public health concerns.
• Information sharing is almost always facilitated through practices that foster the trust of data providers, including regular feedback and communications and strategies to promote good working relationships.”^{Footnote 64}

Finding 6. The Public Health Agency of Canada must play a role in addressing gaps in the surveillance infrastructure.

All lines of evidence confirm that the ability to undertake public health surveillance and to ensure timely, accurate information depends on the organizational capacity and infrastructure that support the function.

Previous reports and audits across the spectrum of communicable and non-communicable disease have noted gaps in the public health surveillance infrastructure.^{Footnote 65} The May 2008 Report of the Auditor General of Canada identified issues with the adequacy and sufficiency of the Public Health Agency’s surveillance function. It identified four main areas of concern: strategic direction, data sharing, results measurement and information sharing.^{Footnote 66}

The Public Health Agency and its provincial and territorial partners have focussed attention on addressing these gaps and are making progress. In interviews, they pointed to the need for continued efforts to build on the work that has already been done to address remaining gaps. Specifically, they highlighted gaps in the following areas:

• legislative, regulatory and policy framework for surveillance generally, and more specifically for information sharing among the federal and provincial and territorial governments
• standardized and automated surveillance processes
• interoperability of systems
• timely surveillance information.

Information-sharing agreements

The need to improve the sharing of public health information has been noted in many reportsFootnote 67, including the Auditor General’s reports from 1999, 2002 and 2008; the Naylor Report (2003); the Weatherill Report (2008); and the Report of the Standing Committee on Agriculture and Agri-Food – Subcommittee on Food Safety (2009)Footnote 68.

Evidence from the document review and key informant interviews identified the following challenges to information–sharing:

• Transfer of surveillance data between provinces and territories and the Public Health Agency: Parliament did not give the Public Health Agency the authority to require provinces and territories to transfer their public health surveillance data to the Public Health Agency. Furthermore, with respect to reportable diseases, all provinces and territories have their own regulations and measures. For example, very few provincial or territorial regulations specify that information relating to reportable diseases be shared with other provinces, federal public health officials for national surveillance purposes or with international health organizations.
• Privacy considerations: There is no legal impediment to the Public Health Agency sharing de-identified information or information of a general nature (statistical, aggregate, publicly available and anonymous epidemiological results) with its provincial counterparts. However, the internal use and external disclosure of personal information or information that can be re-identified is defined by the federal Privacy Act^{Footnote 69}. The sharing of personal information is allowed under the Privacy Act even without the consent of the person to whom it relates, but must meet one of the specific circumstances outlined in the Privacy Act. One example of such a circumstance would be where the public interest in disclosure outweighs any invasion of privacy that could result from the disclosure. Similarly, the provinces and territories are governed by their respective legislation on privacy and the protection of personal information held by the public sector.
• Reporting requirements due to different provincial and territorial legislation governing reportable diseases: Information sharing is made more complex by a lack of consistency related to reporting requirements. Furthermore, different and incompatible systems, each collecting data of varying quality, contribute to the difficulties that the Public Health Agency faces when attempting to aggregate data at the national level.

Due to these challenges, the Public Health Agency is not assured of receiving timely, accurate and complete information. The Public Health Agency “relies on the goodwill of the provinces and territories”^{Footnote 70}, and a variety of policy instruments and informal arrangements to get the information it needs for national surveillance.

As a consequence of these challenges, the current approach to information sharing can be characterized as ad hoc, resulting from informal historical processes, formal agreements between specific parties for specific purposes, program-specific Memoranda of Understanding, informal collegial relationships between Public Health Agency staff and their counterparts in the provinces and territories and other arrangements. These approaches do not adequately mitigate risk.

The risks associated with not having formal information-sharing agreements are noted in a 2010 statement prepared by the Public Health Agency:

“The Agency’s science and its ability to perform core public health functions are compromised without a clear, consistent and legally binding information sharing agreement for public health surveillance and response to infectious diseases. The Public Health Agency’s credibility is at risk. Canadians’ rights and health are at risk.”^{Footnote 71}

Most provincial and territorial key informants support the development of a formal information-sharing agreement to support a systematic, predictable and efficient federal/provincial/territorial approach to sharing public health data and information. Provinces and territories are seeking clarity concerning the federal use of provincial and territorial surveillance data. They want a shared understanding of the purpose of the collection of surveillance data, and specific information about what data is to be collected, when and how. In addition, they want the federal partners to produce and disseminate timely reports derived from the provincial and territorial data.

To address the challenges associated with the sharing of information, the Public Health Agency has been working with its provincial and territorial partners within the Pan-Canadian Public Health Network towards a multi-lateral federal/provincial/territorial information-sharing agreement. In 2009, the Conference of Deputy Ministers of Health approved the inclusion of the Multi-lateral Information Sharing Agreement into the Pan Canadian Public Health Network work plan. The agreement was proposed by the Pan Canadian Public Health Network as a means of addressing the recommendation in Annex C of the Memorandum of Understanding on Information Sharing during a Public Health Emergency, which called for parties to “collaborate in developing or providing definitions, protocols, guidelines and agreements to share information between and among the parties during a public health emergency and a communication strategy to be specified to ensure their effective implementation.”^{Footnote 72}

Once the Multi-lateral Information-Sharing Agreement is signed by Ministers, it will be a legal agreement on the collection, use and disclosure of public health information and biological substances. While the agreement will not provide the “lawful” authority required for sharing personal information, or the authority to compel the provinces and territories to share information, it is intended to strengthen the sharing of public health information in Canada and to address some of the challenges in the current system. It is a framework agreement that sets standards for what type of information can be shared by whom and when.

Standardization and automation of surveillance processes

Provincial, territorial and Public Health Agency key informants agreed that common case definitions, data standards and standards and processes for data management are needed.

Both internal and external key informants frequently identified a national role for establishing data standards − an agreed-upon, common and consistent way to record information. Data standards are necessary so that data can be exchanged among different information systems, and for the data to have consistent meaning from system to system, program to program, and among federal, provincial, territorial and local levels. Key informants also identified a national role in areas such as core and minimum data sets, case definitions and standards and processes for the effective management of data (including data acquisition, data storage, privacy protection and release of information). One provincial/territorial key informant suggested that “if the Public Health Agency made the tough decisions about core data sets and case definitions, particularly around notifiable diseases, the provinces/territories would step in line.”

Key informants indicated that the role of the Public Health Agency in setting standards is not well articulated or operationalized. According to internal key informants, the Public Health Agency has no internal standards, method or guidelines for standardizing common data elements (such as province codes, sex and ethnicity) and lacks the authority to set or impose the use of standards even if they are created. Some provincial and territorial key informants expect that the Public Health Agency should play a stronger role in developing electronic systems for sharing surveillance information.

Public Health Agency key informants describe the importance of strengthening internal coordination to increase consistency in data management. For example, Public Health Agency staff expressed a need for a consistent approach to data collection that ensures that data collected meet the principles of comparability, coherence and quality. The Public Health Agency has not taken a lead in defining common core attributes and therefore risk factor data are not consistently integrated in disease reporting.

Interoperability of systems

Public Health Agency staff and provincial and territorial key informants frequently mentioned the need for a more robust surveillance system with linked data (including sub-regional data, determinant of health data, employer and school absentee data, health care and pharmacy data), better and updated case definitions, an expanded core data set and strategies to harness new sources of information about chronic and infectious disease.

Experts believe that the Public Health Agency should invest in surveillance system infrastructure (i.e. data platforms), advising on surveillance system design including developing and disseminating guidelines for best practices for all elements of a surveillance system. Some provinces and territories expressed a desire for the Public Health Agency to take a clear stand on data platforms and to show leadership in identifying how such innovations should be put into practice.

Public Health Agency key informants pointed to the need for greater interoperability among surveillance systems within programs. Historic patterns of categorical funding have led to the development of disease-specific systems, which has impeded the development of a basic surveillance infrastructure that focuses on a broad range of threats.

Need for timely surveillance information

Evidence from all sources indicates that the Public Health Agency is not fulfilling its role as a source of timely national surveillance data and information. Provincial and territorial key informants, experts and Public Health Agency managers and staff indicate challenges in providing timely, responsive information and signals. Because the Public Health Agency cannot provide timely information in most surveillance areas, it cannot assume a lead role in surveillance.

Although the Public Health Agency is seen as doing well in basic surveillance and monitoring disease trends, several key informants identified the need to move towards “risk and behavioural surveillance” for information to answer questions such as “why do we have aboriginal populations with high levels of diabetes?”

See section 4.2.3 of this report for more discussion about the issue of the Public Health Agency as a source of credible and timely information.