Moving Risk and Behaviour Surveillance Forward in Ontario: A Proposal and Recommendations

Moving Risk and Behaviour Surveillance Forward in Ontario: A Proposal and Recommendations Prepared by the Ontario Risk and Behaviour Surveillance System (ORBSS) Advisory Committee May 30, 2011

How to cite this publication Material appearing in this report may be reproduced or used without permission for educational purposes only. Please use the following citation to acknowledge the source: Ontario Risk and Behaviour Surveillance System Advisory Committee; Ontario Agency for Health Protection and Promotion. Moving Risk and Behaviour Surveillance Forward in Ontario: A Proposal and Recommendations. Toronto: Queen s Printer for Ontario; 2011. Publication Information ISBN 978-1-4435-6772-5 Published by the Ontario Agency for Health Protection and Promotion. Queen s Printer for Ontario, 2011 Ontario Agency for Health Promotion and Protection 480 University Avenue, Suite 300 Toronto, ON M5G 1V2 Telephone: 647-260-7100 www.oahpp.ca The opinions, results and conclusions reported in this paper are those of the Ontario Risk and Behaviour Surveillance System Advisory Committee. No endorsement by the Ontario Agency for Health Protection and Promotion is intended or should be inferred. Moving Risk and Behaviour Surveillance Forward in Ontario: A Proposal and Recommendations i

Table of Contents Acknowledgements... iii ORBSS advisory committee... iii Executive Summary... 1 1.0 Introduction... 4 2.0 Background... 5 3.0 Priority Setting... 9 4.0 Vision, Mission, Goals and Values... 10 5.0 Environmental Scan Review... 13 6.0 Achieving the Vision... 13 7.0 Recommendations... 20 7.1 Coordination... 20 7.2 Central analytics... 24 7.3 Funding... 25 8.0 Conclusion... 27 Appendix A: Ontario environmental scan summary of key systems for ORBSS by ORBSS values... 28 Appendix B: Draft terms of reference for the ORBS partnership... 40 References... 45 Moving Risk and Behaviour Surveillance Forward in Ontario: A Proposal and Recommendations ii

Acknowledgements Many individuals and organizations have contributed to the development of this report. First we would like to thank the Ontario public health community which provided valuable feedback during the conceptualization of an Ontario risk and behaviour surveillance system.we would also like to acknowledge the members of the Ontario Risk and Behaviour Surveillance System (ORBSS) advisory committee for their dedication to creating a vision for risk and behaviour surveillance in Ontario. ORBSS advisory committee Ian Johnson (chair) Scientific Advisor, Ontario Agency for Health Protection and Promotion (OAHPP) Natasha Crowcroft Director, Surveillance and Epidemiology, OAHPP (ex-officio) Paul Fleiszer Manager, Surveillance and Epidemiology, Toronto Public Health Liz Haugh Director, Health Promotion, Windsor-Essex County Health Unit Michael King Epidemiologist, Sudbury & District Health Unit Robert Kyle Commissioner & Medical Officer of Health, Durham Region Health Department Carol Paul Senior Health Analyst, Ontario Ministry of Health and Long-Term Care (MOHLTC) Rosana Pellizzari Medical Officer of Health, Peterborough County-City Health Unit Elizabeth Rael Senior Epidemiologist, Ontario Ministry of Health Promotion and Sport Ruth Sanderson Chronic Disease Epidemiologist, OAHPP Linda Stewart Executive Director, Association of Local Public Health Agencies Paula Stewart Medical Officer of Health, Leeds, Grenville, & Lanark District Health Unit (as of May 25, 2010) (Former Director, Chronic Disease Surveillance, Public Health Agency of Canada) Joanne Thanos Senior Epidemiologist, MOHLTC Carol Woods Program Director/Epidemiologist, Algoma Public Health Moving Risk and Behaviour Surveillance Forward in Ontario: A Proposal and Recommendations iii

Executive Summary The Ontario Risk and Behaviour Surveillance System (ORBSS) Advisory Committee formed in 2010 with the purpose of providing guidance to the Ontario Agency for Health Protection and Promotion (OAHPP) on: Potential models and approach to develop a provincial risk factor and behaviour surveillance system that covers all geographic areas of Ontario and builds on existing infrastructure and systems within Ontario. Governance and coordination mechanisms to support the models. Stakeholder engagement process to test and evaluate proposed models. An initial environmental scan and consultation with the field confirmed the lack of a comprehensive risk and behaviour surveillance system in Ontario. To support a common understanding of how risk and behaviour surveillance should move forward in Ontario, the ORBSS advisory committee developed a vision, mission, goals and values which was confirmed through consultation with the field. These were: Vision Public health priorities and decisions are informed by a province-wide risk and behaviour surveillance system. Mission To coordinate a province-wide surveillance system that provides timely and accurate provincial and local health unit-level estimates of health behaviours, attitudes and other risk factors to support public health decisionmaking. Goals Inform program planning by providing data and information so that programs and services can be tailored to address current and emerging public health needs at the provincial and local health unit level. Enhance policy development by allowing policy-makers to have the information required to enable them to develop new policies or amend existing policies that positively impact the public s health. Enable the identification of priority groups for public health action. Inform program performance management by contributing information for key performance indicators. Use resources efficiently by using existing data, generating province-wide estimates, and providing infrastructure support to eliminate duplication of work in order to maximize access to information in a timely fashion. Moving Risk and Behaviour Surveillance Forward in Ontario: A Proposal and Recommendations 1

Values Equitable Responsive Sustainable Collaborative Accomplishing this vision is a complex undertaking, requiring support from multiple stakeholders made even more challenging in this time of fiscal constraint. To focus our efforts, this report outlines specific recommendations for moving risk and behaviour surveillance forward in Ontario. The recommendations are directed to OAHPP as the ORBSS advisory committee felt that OAHPP was in the best position to receive these recommendations and promote change across the public health system. The final recommendations comprise 15 recommendations in three groupings: coordination, central analytics and funding. Recommendation 1 - Coordination a) OAHPP establishes and provides secretariat support for an Ontario Risk and Behaviour Surveillance (ORBS) partnership, to facilitate relationships among data users, suppliers and funders. b) OAHPP establishes and supports the creation of an ORBS coordinating committee, to facilitate joint planning and integration. c) ORBS partnership identifies existing datasets pertinent to the Ontario Public Health Standards (OPHS). d) ORBS partnership identifies opportunities to gain access to these datasets or tabulated results. e) ORBS partnership investigates the potential to develop new datasets or expand the use of existing ones including the linkages between datasets. f) OAHPP and relevant ministries within the Ontario Government consult with the ORBS coordinating committee/partnership for their collective advice on areas where: collaboration across existing surveillance systems is possible and beneficial new investments in risk and behaviour surveillance would be most efficient. g) OAHPP consults with Aboriginal organizations and the First Nations and Inuit Health Branch of Health Canada on collaborative risk and behaviour surveillance activities for Aboriginal Peoples. Moving Risk and Behaviour Surveillance Forward in Ontario: A Proposal and Recommendations 2

Recommendation 2 - Central analytics a) OAHPP establishes and supports a Central Analytics Advisory Committee (including members from public health units, government, resource centres, and the Association of Public Health Epidemiologists in Ontario (APHEO)). b) OAHPP assumes the role of developing a central analytics program including an electronic platform for risk factor and behaviour surveillance in Ontario. c) OAHPP supports APHEO Core Indicators for Public Health Work Group to define the core indicators for central analytics. d) OAHPP assumes the role of producing the results for a key set of indicators. e) OAHPP examines ways to enhance education and training on the production and interpretation of indicators. Recommendation 3 - Funding a) OAHPP seeks support from Ontario Ministries of Health and Long-Term Care, Health Promotion and Sport and Children and Youth Services for the development of the central analytics program, key indicators and ORBS coordinating committee. b) OAHPP continues their current support of Rapid Risk Factor Surveillance System (RRFSS) including the scientific and technical advice for the development of modules of mutual interest. c) OAHPP works with the ORBS partnership to enhance funding to expand data collection in order to answer provincial time-sensitive/emerging questions. While the ORBSS advisory committee has made recommendations on the major issues, identified gaps remain, particulary in the surveillance systems related to child health and other priority populations. Furthermore, comprehensive province-wide coverage in RRFSS for all health units has not yet been achieved and continues to raise considerable discussion in the public health community. The ORBSS advisory committee encourages others to address these issues while the initial recommendations are acted upon. Moving Risk and Behaviour Surveillance Forward in Ontario: A Proposal and Recommendations 3

1.0 Introduction In Ontario, the public health system is informed by a number of risk and behaviour monitoring systems. Some of these systems provide information on health determinants and status for the general population (e.g., the Canadian Community Health Survey (CCHS) and the Rapid Risk Factor Surveillance System (RRFSS)), while other systems focus on a specific population or behaviour (e.g., Aboriginal Peoples Survey (APS), Ontario Student Drug Use and Health Survey (OSDUHS) and the Infant Feeding Survey). The existing monitoring systems provide needed and relevant data and information for program development and evaluation. However, each system operates independently, guided by its own mandate. With the notable exception of the CCHS, most of the systems are not designed to provide both provincial and local level estimates or produce trends over time. Furthermore, despite Ontario s many sources of information, key information gaps continue to exist. The monitoring of behaviour and risk plays a key role in managing public health. Since the second half of the 20th century, behaviour and social factors have been recognized as major contributors to health. 1,2,3 Within Ontario and more broadly within Canada, public health monitoring or surveillance has been recognized at all levels as a core function of public health. 4 Surveillance is the systematic and continuous collection, collation and analysis of health-related data that is disseminated so appropriate action can be taken. 5 Federal, provincial and territorial ministers of health are committed to enhancing capacity for surveillance of chronic disease risk factors and determinants. To address the gaps in chronic disease surveillance, they endorsed four strategies a to address the gaps in surveillance in Canada. 6 Risk and behaviour surveillance plays an essential role in public health planning, interventions and evaluation. It allows for observing, predicting and minimizing the harm of emerging health threats, and assists with establishing effective public health programs and services. Public health programs should be evidence-informed, using both effective approaches to help reduce risk and behavioural factors for disease, and surveillance to identify the optimal design and evaluation of such programs. The need for a province-wide risk and behaviour surveillance system was articulated in the Agency Implementation Task Force s From Vision to Action: A Plan for the Ontario Agency for Health Protection and Promotion 7 and echoed in Strategic Plan for Action, 8 a document commissioned by the RRFSS steering committee. The strategic plan for action identified the need for representative sampling and analysis at both the provincial and local level, as well as sustainable base funding for surveillance activities. The Agency Implementation Task Force also recommended that the Ontario Agency for Health Protection and Promotion (OAHPP) lead the enhancement of RRFSS and provide a vehicle for addressing pressing surveillance needs in Ontario. The recommendation to establish a province-wide risk and behaviour surveillance system was a The four strategies to enhance capacity are: 1. Enhance federal, provincial, territorial and local/regional capacity to analyze, interpret and use surveillance data; 2. Expand data sources to fill gaps in surveillance knowledge; 3. Enhance collaboration, planning and evaluation for surveillance among all the stakeholders; 4. Build capacity across jurisdictions for congruent public health legislation supportive of chronic disease surveillance. Moving Risk and Behaviour Surveillance Forward in Ontario: A Proposal and Recommendations 4

supported by the understanding that provincial funding had been designated for the purpose. However, in September 2009, the Ministry of Health and Long-Term Care and the then Ministry of Health Promotion (now Ministry of Health Promotion and Sport) identified that funds for this system were not available. As such, a new approach was required. An Advisory Committee, led and centrally supported by OAHPP, was established to propose a plan for the Ontario Risk and Behaviour Surveillance System (ORBSS). Recognizing the constraints of the current funding environment within Ontario, the ORBSS advisory committee abandoned the notion of creating a new surveillance system and instead considered ways to better align and build on Ontario s existing surveillance infrastructure and systems to move risk and behaviour surveillance forward in Ontario. The ORBSS advisory committee has, through consultation, identified risk and behaviour surveillance needs and priorities of the public health community, and articulated a vision, mission, goals and values for how to move risk and behaviour surveillance forward in Ontario. This document includes this information and specific sets of recommended actions and approaches for OAHPP in three key areas: coordination, central analytics and funding designed to advance the vision of ORBSS. It is recognized that advancing this vision of ORBSS is a complex undertaking and goes beyond the work of OAHPP itself, requiring multiple stakeholder participation. 2.0 Background Environmental scan The first job of the ORBSS advisory committee was to conduct an environmental scan in order to understand the current status of risk and behaviour surveillance systems in Ontario. The scan included a review and assessment of the strengths and limitations of: Aboriginal Children s Survey (ACS) Aboriginal Peoples Survey (APS) Better Outcomes Registry and Network Ontario (BORN-Ontario) Canadian Community Health Survey (CCHS) Canadian Health Measures Survey (CHMS) First Nations Regional Longitudinal Health Survey (RHS) Infant Feeding Surveys Integrated Services for Children Information System (ISCIS) of the Health Babies Healthy Children (HBHC) program Ontario Student Drug Use and Health Survey (OSDUHS) Rapid Risk Factor Surveillance System (RRFSS) School Health Action Planning and Evaluation System Ontario (SHAPES-Ontario) School Health Environment Survey (SHES). Moving Risk and Behaviour Surveillance Forward in Ontario: A Proposal and Recommendations 5

Appendix A provides a summary of the strengths and limitations of these key systems. The detailed report, including the environmental scan entitled, Discussion paper: Developing the foundations for an Ontario Risk and Behaviour Surveillance System (ORBSS), is available on the ORBSS website. The ORBSS advisory committee also considered other scans and overview documents, including an environmental scan of regional risk factor surveillance 9, an international scan of local-level chronic disease risk factor surveillance systems 10 conducted by the Canadian Alliance for Regional Risk Factor Surveillance, a recently released White Paper on Surveillance and Health Promotion 11 by the International Union for Health Promotion and Education Global Working Group of the World Alliance for Risk Factor Surveillance, and the Centers for Disease Control and Prevention s Behavioural Risk Factor Surveillance System 12 (which operates throughout the United States of America). A number of additional systems, surveys and organizations were considered, but were not included in this summary since they did not focus on the surveillance of risks or behaviours. Specifically these were: intellihealth ONTARIO Ontario Health Study SMARTRISK. From a review of the environmental scan, the ORBSS advisory committee confirmed that Ontario lacks a centralized and comprehensive province-wide risk and behaviour surveillance system. While there are many existing risk and behaviour surveillance systems in Ontario conducting excellent work, there is minimal to no coordination among the various systems. The cultivation of partnerships among these systems and centralized support for others may augment the ability of each system and the systems as a whole. Gaps and challenges within the existing systems Despite the number of available surveys and surveillance systems that capture ongoing population-level risk and behaviour information for Ontario, the ORBSS advisory committee identified a number of gaps in surveillance capacity which exist along a range of dimensions. The following is a summary of these dimensions, including examples or explanations of gaps in Ontario s risk and behaviour surveillance capacity. Framework Current surveillance systems for risk and behavioural factors have developed without an overall conceptual framework. A conceptual model of health would assist with determining the areas of greatest priority and how the indicators would fit together to create a more complete picture of the public health need. Ideally, the framework would be linked to one used for program development and evaluation so the indicators will support such decision-making. Supportive infrastructure The overall development of risk factor surveillance for health promotion and disease prevention for public health in Ontario is driven by the requirements of the Ontario Public Health Standards (OPHS) which include assessment and surveillance. The OPHS outline the expectations for boards of health, which are responsible for providing public health programs and services but does not include consideration of the overall management and Moving Risk and Behaviour Surveillance Forward in Ontario: A Proposal and Recommendations 6

coordination of provincial risk factor surveillance. Ideally, other considerations (such as the need for supportive legislation that balances the needs of the public health practice, policy and research) would help embed the use of the information gathered from surveillance into the decision-making process. Coverage Gaps exist geographically, for specific topics, and subpopulations (e.g., children and vulnerable populations). Gaps which exist over time make it difficult to assess changing trends. Some systems, like CCHS and OSDUHS, provide precise estimates at the provincial and regional level. Other systems, like RRFSS, have not yet achieved full provincial coverage, but provide participating public health units with the flexibility to achieve more precise estimates and drill down to information for lower geographic levels. Specific subpopulations and potential priority populations for public health interventions, such as young children and Aboriginal Peoples, are not well served by general population surveys such as CCHS, RRFSS and OSDUHS. Separate targeted surveys, such as ACS, APS and RHS, do exist, but health unit-level estimates for these subpopulations do not. One specific challenge for most survey-based behavioural and risk factor surveillance is the declining response rates. These are now at critical levels (below 60 per cent) which in turn increase the potential response bias. Addressing these declining rates requires innovation in survey methods to ensure the inclusion of subpopulations and validity of the estimates. Content Surveillance systems must be both flexible, to accommodate emerging issues, and consistent, to support trend analysis. Most systems are created with their own specific balance of these two competing parameters. For example, RRFSS is more flexible than other systems such as the CCHS or OSDUHS. RRFSS has the potential to develop, test and implement survey modules or content on particular topics, or to initiate surveys in new geographic areas in a much more timely fashion that these other two surveys. On the other hand, CCHS and OSDUHS have stable estimates that go back over years, allowing for the accurate assessment of trends. Most systems focus on individual risk factor surveillance. With a few notable exceptions 13, systems that monitor a multiple set of community risk factors (such as work, school and built environments, or monitor environmental risks (e.g., noise pollution, contaminants)) remain largely underdeveloped and/or underutilized. Linkages between systems Few opportunities exist for formal linkage between datasets at the individual level and widespread examples of group (ecological) level analysis within Ontario are still rare. Some systems, such as RRFSS, provide postal codes that may permit geographic visualization or neighbourhood-level (including ecological) analysis. Some, like CCHS, permit individual record-level linkage (e.g., using the health card number) for specified users (such as the Institute for Clinical Evaluative Sciences (ICES)), purposes and research projects. No systematic approach exists to link risk factor surveillance data in Ontario and while record linkage is employed by some surveillance systems such as Moving Risk and Behaviour Surveillance Forward in Ontario: A Proposal and Recommendations 7

cancer or diabetes, methodologies for record linkage for the purpose of risk factor surveillance remains largely underdeveloped. Development of plans, principles or an orchestrated approach for linkage or ecological analysis could contribute to evaluation of programs and policies, and to answering in-depth research questions they would enhance public health and health promotion practice in Ontario by making better use of available data. Link to a public health action Ontario s risk and behaviour surveillance systems have historically focused on data collection with a smaller investment in other aspects of surveillance such as the analysis, interpretation and dissemination of the results so as to achieve action. While the ORBSS advisory committee focused solely on surveillance systems that went beyond data collection, it was generally difficult to determine if the data or information were used in decisionmaking. The ORBSS advisory committee noted that there are a growing number of analysis interfaces available on the Internet that aim to add value to data. For example, the CCHS provides a range of data products through the web, OSDUHS provides standard reports with trend analyses using their survey data (also on the web), the Ontario Tobacco Research Unit accesses a variety of data sources for the Tobacco Informatics Monitoring System (TIMS) as well as the Chronic Disease Informatics Monitoring System currently in the development stages 14. In most cases, the ability to analyze, interpret and link to action is determined by the individual public health unit. While centrally RRFSS provides results for a core set of indicators on the web, some public health units produce extensive tailored analyses of RRFSS data, with the result being a documented impact on local decision-making. This means that the onus is on the public health unit to produce detailed results and not all public health units have the same capacity to analyze such data, process the information and interpret it to create public health intelligence and ultimately inform decision-making. Sustainability By their very nature, surveillance systems require long-term stable funding. Cuts to the systems are often accommodated by decreasing the sample size (which leads to unstable rates) or decreasing the number of indicators (which leads to data gaps and an inability to do trend analyses). Other cuts may reduce the ability to produce or interpret the results and sustain the quality of the data collection or the system as a whole which will in turn affect decision-making. This does not even consider the capacity to respond to emerging issues where new funds have to be found or existing ones redeployed. Some systems, such as SHAPES-Ontario, SHES and the IFS, are transient and rely on project-based funding. Other systems, such as RRFSS, rely on decentralized funding by participating health units on a year-to-year basis. As indicated above, secure funding is preferred in order to generate meaningful and useful surveillance products. Developing the plan With all these options and issues in mind, the ORBSS advisory committee made two decisions: 1. Proceed by assessing the priorities of the field and initiating a strategic planning approach to risk and behaviour surveillance. Moving Risk and Behaviour Surveillance Forward in Ontario: A Proposal and Recommendations 8

The Committee produced a discussion paper which included a draft vision, mission, goals and values. This paper was shared with the public health community and other stakeholders for consultation and comment. 2. Focus surveillance activities for two main audiences: the local public health units and the provincial public health system as a whole. This meant that the needs of other interested public health partners such as Local Health Integration Networks (LHINs) would be considered but the needs of the public health system (both local and provincial) would take priority. 3.0 Priority Setting To help to establish the needs and priorities for risk and behaviour surveillance, the ORBSS advisory committee conducted an online survey in August 2010, which helped to inform the development of this proposal for ORBSS. The online survey was designed to collect feedback on the preliminary vision, mission, goals and values of ORBSS, and to gather the key priorities for risk and behaviour surveillance in Ontario. The invitation to participate in the online survey was distributed to public health units and interested persons/groups who had indicated an interest in ORBSS by signing up to receive updates from the ORBSS email list. A total of 25 out of 36 public health units (69 per cent) submitted a formal response on behalf of their public health unit. An additional 42 respondents completed the general stakeholder survey for an estimated response rate of 55 per cent. A full report of the online consultation is available on the ORBSS website 15. The main results of the online consultation indicated: Strong support for the vision, mission and values as stated. Some areas were identified as requiring changes to word choice. Subsequently, the term province-wide was clarified to mean covering and available to the whole province, both at the health unit and at the provincial level. Strong agreement that the primary audience should be health units and provincial government ministries. Existing data gaps and data needs for key populations are not covered by the current surveillance systems. In particular, surveillance systems for children and youth as well as priority populations (such as new immigrants and Aboriginal Peoples) were identified. In addition, information on policies and programs in specific settings, and specific environmental factors or organizational environments were identified. Population health assessment could be improved by making more datasets available to public health units and by using existing datasets to provide detailed reports on selected topics that relate to the OPHS. A final suggestion was to develop online tools to facilitate data analysis at the local level. Moving Risk and Behaviour Surveillance Forward in Ontario: A Proposal and Recommendations 9

Based on the online consultation the ORBSS advisory committee amended the vision, mission, goals and values and identified three key proposed directions for ORBSS related activities, specifically: 1. Central analytics 2. New data or information acquisition 3. Support for the Rapid Risk Factor Surveillance System (RRFSS). These three directions were shared in subsequent focused discussions with APHEO and government stakeholders. Two additional consultations augmented the results from the online consultation. The first, with APHEO, was held on September 21,2 010, and involved approximately 50 to 60 public health epidemiologists and others interested in public health epidemiology. The themes from this consultation were similar to those expressed in the online survey but some additional themes arose. These themes included: Continue to clarify that ORBSS is a planning project for a comprehensive surveillance strategy in Ontario and not meant to replace RRFSS by creating a new data collection system. Seek to align efforts with APHEO s Core Indicators for Public Health in Ontario project. Focus on efforts which raise the capacity of all health units to meet the OPHS. The third consultation was held on October 13, 2010, with representatives from the Ontario Ministries of Health and Long-Term Care, Health Promotion and Sport, and Children and Youth Services. Participants, who included senior management, suggested that, in addition to health units and government, ORBSS would also be of interest to Local Health Integration Networks. The participants indicated that there is a need for an overall coordinated approach to risk factor surveillance in Ontario and that they are looking forward to receiving a detailed proposal to which they could respond. 4.0 Vision, Mission, Goals and Values The environmental scan and consultation with the field confirmed the lack of a comprehensive risk and behaviour surveillance system in Ontario. In addition, despite informal and sporadic communication between systems, there was a notable absence of any formal coordination among existing systems. To come to a common understanding of how risk and behaviour surveillance should move forward in Ontario, the ORBSS advisory committee developed a vision, mission, goals and values which were modified to reflect feedback from the public health community during the first consultation. Figure 1 provides an overview of the vision, mission, goals and values of ORBSS. Moving Risk and Behaviour Surveillance Forward in Ontario: A Proposal and Recommendations 10

Value Goals Mission Vision Figure 1: Overview of ORBSS vision, mission, goals and values Public health priorities and decisions are informed by a provincewide risk and behaviour surveillance system A coordinated province-wide surveillance system that provides timely and accurate provincial and local public health unit-level estimates of health behaviours, attitudes and other risk factors to support public health decision-making Inform program planning Enhance policy development Enable the identification of priority groups Inform program performance management Use resources efficiently Equitable Responsive Sustainable Collaborative Vision Public health priorities and decisions are informed by a province-wide b risk and behaviour surveillance system c The vision affirms that establishing and maintaining effective public health programs and services depends on the availability and use of timely, valid and reliable information. Public health programs and services are a vital component of the health system. They help people stay healthy through the protection and promotion of health and the prevention of illness. The need for a comprehensive risk and behavioural surveillance system in Ontario is b Province-wide refers to having data available at both the local and provincial level. c Surveillance includes not only data collection and analysis, but also data integration, interpretation, preparation of reports, dissemination of reports, management and coordination, and supportive legislation. Moving Risk and Behaviour Surveillance Forward in Ontario: A Proposal and Recommendations 11

shaped by the need of local health units, OAHPP, the Government of Ontario and others to have accurate and upto-date information on behaviour and risk factors in Ontario to allow for informed public health practices and decisions. Mission A coordinated province-wide surveillance system that provides timely and accurate provincial and local public health unit-level estimates of health behaviours, attitudes and other risk factors to support public health decision-making. To achieve the vision that public health practices and decisions are informed by a province-wide risk and behaviour surveillance system, a comprehensive risk and behavioural surveillance system will help public health units, OAHPP, the Government of Ontario and others plan and implement programs and services that meet the OPHS requirements by providing relevant evidence. Goals The ORBSS advisory committee identified the following primary goals for a comprehensive risk and behavioural surveillance system in Ontario: Inform program planning by providing data and information so that programs and services can be tailored to address current and emerging public health needs at the provincial and local health unit level. Enhance policy development by allowing policy-makers to have the information required to enable them to develop new policies or amend existing policies that positively impact the public s health. Enable the identification of priority groups for public health action. Inform program performance management by contributing information for key performance indicators. Use resources efficiently by using existing data, generating province-wide estimates, and providing infrastructure support to eliminate duplication of work in order to maximize access to information in a timely fashion. Values Equitable, responsive, sustainable and collaborative have been identified as the four values of moving risk and behavioural surveillance forward in Ontario. As the key, underlying qualities that will guide the ORBSS advisory committee in developing a proposal and recommendations, these values support criteria for decision-making, particularly when resources are scarce. Moving Risk and Behaviour Surveillance Forward in Ontario: A Proposal and Recommendations 12

Equitable Ensure that the all public health units in Ontario are represented in the surveillance system and that all public health units have access to surveillance information and related products in order to address the public health needs of Ontario s diverse and vast population. Responsive Respond to current and emerging public health events and the needs of health units by providing high-quality data in a flexible manner. Sustainable Build the foundation for a surveillance system that can continue to meet the needs of public health units and the Government of Ontario. Collaborative Work effectively and efficiently with other surveillance systems, and to mutually build on existing sources. 5.0 Environmental Scan Review The ORBSS advisory committee returned to the surveillance systems and surveys considered in their environmental scan and reviewed them in the context of stated values - responsive, equitable, sustainable and collaborative (see Appendix A). The review highlighted that no individual system or survey exhibits strength in all four value areas, but that each system possesses individual strengths and limitations. When considered collectively, the overall system presents strengths across all areas. 6.0 Achieving the Vision With the overall strategic vision set, the ORBSS advisory committee moved on to the methods of achieving this vision. The following steps were taken: Creation of an overall conceptual model for health on which to base the surveillance system. Examination of the flow of data to intelligence within a surveillance system and application of this approach to identify areas where investments in the system may be most effective and efficient. Review of the options where investments would have the most effect so as to map out a plan of action. At the same time as ORBSS was exploring an approach to achieving its vision, RRFSS was also moving forward independently with some major changes including: Examination of the feasibility of creating a provincial sample for RRFSS through a one year pilot study. Moving Risk and Behaviour Surveillance Forward in Ontario: A Proposal and Recommendations 13

Reduction of the number of questions in the survey s core content (those questions common to all public health units). Studying the use of multimodal data collection methods to improve response rates and move away from only using telephone interviewing. To accomplish these changes RRFSS participating public health units agreed to jointly fund a 2011 pilot project of provincial data collection. Conceptual model of health Having a theoretical basis or conceptual model about health and its determinants is important for ORBSS, since it underpins the development of the content and scope of the surveillance system. 16 The conceptual model helps define the underlying assumptions of causation and relationship, which in turn indicate what information would be required. The model can also guide how the indicators will be assembled into the final reports. The ORBSS advisory committee chose a conceptual model of health first proposed by Dahlgren and Whitehead (Figure 2) and described in a paper by the World Health Organization (WHO) 17. An advantage of this model is that it is linked to action since the authors focus on policy options for the WHO that could reduce inequity and promote health. The model is also supported by the chief public health officer of Canada who used it in his 2008 report on the state of public health in Canada 18 and it has been used by many other public health jurisdictions within Ontario and around the world. The implications of the adoption of this model include the following: Inclusion of a broad range of risk factors and determinants of health that impact on those risk factors. Factors such as income, culture and ethnic origin are all envisioned to contribute to the populations health and are included as part of ORBSS. In addition, the model opens the door to non-traditional sources of information, such as measures of agriculture and food production, since these factors do impact on health. The broader conceptual model is therefore permissive, in the sense of allowing for a broader scope of contributing factors to be included in the surveillance system. Inclusion of a continuum of individual-based measures (such as traditional risk factor surveys) to more community-based and environmental measures such as housing, food production, physical environment and employment. Many of these factors may be available at an ecological level and imply the use of more recent analytic techniques such as geographic information systems (GIS) and analyses over time and space. One example of such an application is the work by Glazier and Booth 19 on the availability of transportation and grocery store access on diabetes rates in Toronto neighbourhoods. New data sources that will assist in providing ecological analyses should thus be considered. Moving Risk and Behaviour Surveillance Forward in Ontario: A Proposal and Recommendations 14

Applicability of the model to public health planning and evaluation. Many of public health programs and particularly those with health promotion requirements acknowledge social and environmental factors. Including these factors in the surveillance system should support better overall public health planning, delivery and evaluation. Figure 2: Conceptual model of risk factors for health Source: Adapted from Dahlgren & Whitehead (1991) It should be noted that the conditions provided in the figure are examples and not meant to be an exhaustive list. It is also acknowledged that some factors may interact directly. For example, exposures in the work environment (second outermost shell) may have a direct impact on health and are not mediated by social and community networks (third outermost shell). Indeed the list of determinants included originally by Dahlgren and Whitehead is slightly different and may be considered more inclusive than those listed by the 2008 report by the chief public health officer in Canada. Examples of the indicators in the different levels of the conceptual model are summarized in Table 1. Moving Risk and Behaviour Surveillance Forward in Ontario: A Proposal and Recommendations 15

Table 1: Conceptual model factors and examples Conceptual model risk factor Examples Age, sex, hereditary/constitutional factors Individual lifestyle factors Social and community networks Living and working conditions Age, sex, ethnic origin Diet, exercise, sexual practices, environmental exposure (e.g., suntanning), etc. as experienced by the individual Lifestyle factors of friends (e.g., proportion of friends who smoke or binge drink alcohol), social support, etc. Many of these are interrelated (e.g., income and education, income and unemployment) o Income Relative and absolute income o Education Education (> grade nine, professional training, etc.) o Unemployment Short-term, long-term unemployment o Work environment Work exposures, stress, etc. o Housing Housing, type of housing, or lack thereof o Health services Access to health services (both treatment and preventive) o Agriculture and food production General socio-economic, cultural and environmental conditions Measures of local versus imported food production, levels of fat in diet, etc. Distinct from the examples above, these refer to the overall economic conditions of the state (i.e., economic status of the community as a whole) and cultural norms of particular groups. The environmental conditions can refer to increased environmental exposures in one area versus another (e.g., increased heat in a city due to the canyon effect ). Moving Risk and Behaviour Surveillance Forward in Ontario: A Proposal and Recommendations 16

Conceptual model of data, information and intelligence Most surveillance systems start with the collection of raw data (Figure 3). These data points typically include individual attributes (such as age or sex), dates of events or practices, and descriptions of the outcomes of interest. These data points by themselves must be aggregated or summarized as indicators and turned into information through the use of analytical techniques. An example of the latter is the calculation of rates and presentation of rates over time, age, or other analytical dimension. The information is then interpreted in the context of what is known from the scientific literature and local characteristics to create intelligence. The vision of ORBSS is to support the creation of this intelligence and thereby improve decision-making so that it will ultimately lead to actions that improve health outcomes. Figure 3: Conceptual model of data to information to intelligence Synthesis level Intelligence Information and interpretation Audiences/ Users Policy-makers, decision-makers, health professionals and public Epidemiologists, program managers, directors, and staff Public reports Information Indicators Pre-set analysis e.g. dashboard Aggregated datasets Epidemiologists and analysts Epidemiologists and analysts Raw data files Admin data Vital stats Surveys e.g. RRFSS CCHS Census Epidemiologists, analysts, and other specialists Moving Risk and Behaviour Surveillance Forward in Ontario: A Proposal and Recommendations 17

Although this data-information-intelligence model describes the output, there are approximately nine main components to the surveillance process. These are: 1. System design (decisions on the overall structure of the surveillance system) 2. Content selection (what measures or data will be collected) 3. Data collection (how the data is collected in a complete and unbiased fashion) 4. Data collation (how the data is stored and brought together in an appropriate manner) 5. Data analysis (how the data is turned into indicators and information) 6. Report writing (the creation of intelligence relative to the questions that need to be addressed/decisions that need to be made) 7. Dissemination of results (how the reports are distributed to those who need to know) 8. Quality assurance (assuring that the processes described above are appropriate and done well) 9. Training and education (enhancing the skills of persons involved in risk and behavioural surveillance). Underlying these, and implicit in them, was the recognized need for management and coordination. The ORBSS advisory committee examined these nine components relative to the existing risk factor surveillance systems (listed in the environmental scan) and tried to assess the relative needs for investment as well as return on investment of new resources. The results were as follows: Content selection Existing surveillance system should realign their content selection so as to maximize coverage and minimize duplication. As an example, some of the content that is routinely collected by RRFSS is identical to that collected by the CCHS. While duplication of selected demographic data is required, the degree of duplication should be minimal so that greater efficiencies can be found. Data collection Many public health units indicated that the priority area for new or additional data collection was child health (aged 0 to 11 years) since public health is responsible for significant programming in this area but have fewer systems collecting data about this population. However, creating a new surveillance system or building on those that already exist in order to better understand the risk and behaviours of children would require significant investments. There was agreement that this is an overall priority for Ontario and it would require significant work to create such a system. Data collation There was widespread support for the creation of a data warehouse for risk factor data, similar to that of intellihealth ONTARIO. There was recognition that, in comparison to this extensive collection of clinical administrative records of health service delivery, there is no similar approach for the collation of Moving Risk and Behaviour Surveillance Forward in Ontario: A Proposal and Recommendations 18

risk factor, chronic disease, and environmental health surveillance data. The creation of such a warehouse or repository would support an overall system. However, the logistics of doing so were considered beyond the scope of the ORBSS advisory committee. As indicated earlier, the exploration of new data sources and their application to geographic and community level analysis was considered as a potential area for improvement in risk factor surveillance. Data analysis The idea of centralized analysis of CCHS, RRFSS and other datasets by one central provincial agency was seen as both efficient and effective. Such reports would standardize the outputs and ease the workload on public health epidemiologists particularly in smaller health units. It would allow epidemiologists to take on other types of work, such as interpreting and applying the results. APHEO s Core Indicators for Public Health in Ontario Working Group indicated their strong interest in OAHPP supporting their development of indicators to assist with this aspect of ORBSS. One of the emerging areas identified where central analysis may be helpful was the use of geographic information systems (GIS) and spatial analysis. Report writing While the ORBSS advisory committee believed that the writing of detailed surveillance reports should be left to the appropriate local and provincial authorities, there was agreement that ORBSS should explore the creation of a dashboard or other similar format for creating a standard report with a small set of key indicators. These indicators would need to be chosen relative to the requirements of the OPHS, and then made operational in the form of standard reports. Guides to aid in the interpretation of these reports (including documentation on the data sources and methods used) should also be produced. Dissemination and quality assurance The ORBSS advisory committee recognized that through dissemination, feedback to data funders and suppliers would be gained and changes could be made in the development process. In turn, more purposeful, multi-directional, knowledge exchange processes should be fostered. Training and education There was general agreement that ORBSS had to include training and education components at all levels. This would include education or resources on the advantages and disadvantages of each source of data, methods of analysis and the limitations of interpretations. Training on new forms of analysis such as geographic information systems (GIS) should also be included. Moving Risk and Behaviour Surveillance Forward in Ontario: A Proposal and Recommendations 19

7.0 Recommendations A draft set of recommendations for ORBSS was developed and reviewed by the ORBSS advisory committee. The ORBSS advisory committee chose to direct the recommendations to OAHPP as they felt that OAHPP was in the best position to receive these recommendations and promote change across the public health system. To garner feedback on the draft recommendations a second stakeholder consultation was undertaken including a series of focused discussions and an opportunity for email feedback. A PowerPoint presentation including background on ORBSS and the draft recommendations was created for use during the second round of consultations and later posted on the ORBSS website for feedback. Four different consultation meetings were held, one for each key group of stakeholders, including the Council of Ontario Medical Officers of Health (COMOH), RRFSS, APHEO, and the Ontario Ministries of Health and Long-Term Care, Health Promotion and Sport and Children and Youth Services. An email was sent to all persons who had signed up to the ORBSS email list inviting them to review the presentation and submit comments directly to a designated project email address. The results of these consultations can be grouped into three main areas. These are: 1. Coordination of existing surveillance systems 2. Provision of central analytical support 3. Funding including support for RRFSS. Each of these sets of recommendations will be discussed and presented below. Results of the consultation will be presented after each of the recommendations. 7.1 Coordination ORBSS as a system of systems - Coordination of existing surveillance systems: Integration and joint planning At many points during the initial and second round of consultations, there were instances when participants requested clarification of the meaning and use of the term system within the name ORBSS. From their perspective, a surveillance system was one that went through all the steps from data collection to analysis, interpretation, preparation and dissemination of reports. In contrast, other respondents agreed with the concept of ORBSS as a system that would provide better integration of the existing surveys and smaller systems. As the ORBSS advisory committee reflected on the existing political context and fiscal environment, the members shifted away from the idea of ORBSS replacing existing surveys or systems. A more pragmatic view emerged, that of a partnership and coordinating committee. Figure 4 shows a schematic view of the Ontario Risk and Behavioural Surveillance (ORBS) partnership including the coordinating committee. Moving Risk and Behaviour Surveillance Forward in Ontario: A Proposal and Recommendations 20