Discussion paper: Developing the foundations for an Ontario Risk and Behaviour Surveillance System (ORBSS)

Transcription

1 Discussion paper: Developing the foundations for an Ontario Risk and Behaviour Surveillance System (ORBSS) Prepared by the ORBSS Advisory Committee, July 2010

2 Introduction The surveillance of behaviour and risk plays a key role in managing public health. Since the second half of the 20th century, behaviour and social risk factors have been recognized as major contributors to disease. Studies of the epidemiology of cardiovascular disease, like the Framingham Heart Study, the role of sexual practices in transmitting HIV 1, and environmental and occupational exposures to toxins, such as lead and mercury, have helped to illuminate this association. More recently, smoking has been revealed as the highest populationattributable risk of death. Public health provides evidence-based approaches to help reduce behaviour and risk factors for disease, and surveillance plays a key role in designing and evaluating public health programs. Surveillance is the systematic and continuous collection, collation and analysis of health-related data that is disseminated so appropriate action can be taken. Surveillance plays a fundamental role in predicting, observing and minimizing the harm of emerging health events, and establishing effective public health programs and services. 2 In Ontario and Canada, surveillance is recognized as one of the core functions of public health, but there has long been a need for rapid access to information on priority health topics. Statistics Canada has historically conducted regular surveys of the population, including the Health Promotion Survey, the National Population Health Survey and, most recently, the Canadian Community Health Survey. However, these surveys have been limited to an established set of questions and their results have been released two years post-data collection qualities that have limited their use for real-time public health interventions. In 1999, the Rapid Risk Factor Surveillance System (RRFSS) was piloted in one Ontario health unit to provide timely and relevant data for local public health needs. Now, 19 out of 36 health units across the province participate in RRFSS, which is primarily used to monitor key public health issues, but also to collect information on emerging issues. Results from RRFSS are used to support decision-making for health program planning and evaluation, and to improve community awareness regarding the risks for chronic disease, infectious disease and injury. Although all Ontario health units are invited to take part in RRFSS, those that participate are required to independently support data collection and funding. This has been a limiting factor in some areas. The need for a provincewide 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. The Agency Implementation Task Force 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 1 CP Shah, Public Health and Preventive Medicine in Canada, 5 th edition, Elsevier Press, Ontario Public Health Standards 2008 Discussion paper: Developing the foundations for an Ontario Risk and Behaviour Surveillance System 2

3 Ontario. The need for a provincewide risk and behaviour surveillance system was echoed in Strategic Plan for Action, a document commissioned by the RRFSS Steering Committee. This document identified the need for representative sampling and analysis at the provincial and local level, as well as sustainable base funding for surveillance activities. The recommendation to establish a provincewide risk and behaviour surveillance system was supported by the belief that provincial funding had been designated for the purpose. However, in September 2009, the Ministry of Health and Long-Term Care and the Ministry of Health Promotion identified that funds for this system were not available. As such, a new approach was needed. An advisory committee, led and centrally supported by OAHPP, was established to propose a plan for the Ontario Risk and Behaviour Surveillance System (ORBSS), a provincewide surveillance system aimed at producing estimates of health behaviours, attitudes and other risk factors. Recognizing the importance of this system, OAHPP wants to help facilitate the development of a proposal for ORBSS. The proposed system will build on Ontario s existing surveillance infrastructure and systems to help local health units fulfill the requirements of the Ontario Public Health Standards (OPHS), and to generate quality provinciallevel data for the purposes of surveillance, research, policy development and evaluation. For more information about the ORBSS Project, please visit The ORBSS Advisory Committee has a term of one year. Over the course of this year, the committee will conduct an environmental scan of existing surveillance systems and approaches; articulate potential system models; oversee a provincewide consultation process; make recommendations; assist with the development of a business case for funding; and advise on the implementation of an ORBSS pilot. This discussion paper presents the work conducted by the ORBSS Advisory Committee to date. It summarizes key findings from an environmental scan, which outlines the strengths and limitations of existing risk and behaviour surveillance systems in Ontario and analyzes these systems in relation to the aims of ORBSS. It also provides the committee s initial thoughts on the vision, mission, values and goals of ORBSS. The purpose of this discussion paper is to share and seek comments and insights into the foundational work of the ORBSS Advisory Committee. The committee recognizes that further consultation and articulation of potential system models may require us to refine and enhance the foundational work that has been completed to date. Context Reports have advocated that Ontario needs a sustainable provincewide system to capture local and provinciallevel estimates of health behaviours, attitudes and other risk factors. Presently, RRFSS provides data to approximately half of Ontario s health units. While the data covers approximately 80 per cent of the population, full provincial coverage has not yet been achieved. The Canadian Community Health Survey (CCHS) has expanded its operation over the past few years and now provides a more flexible and timely tool. Ontario also purchases additional sample size for selected areas, such as Toronto, so that the Local Health Integration Networks and health units can use the data. Discussion paper: Developing the foundations for an Ontario Risk and Behaviour Surveillance System 3

4 In 2008, the OPHS were released. The standards set out requirements for public health programs and services, and outline expectations for boards of health. The OPHS are founded on Principles, a Foundational Standard, and Program Standards. The Foundational Standard consists of four specific areas: (i) (ii) (iii) (iv) population health assessment surveillance research and knowledge exchange program evaluation Health units are required by OPHS to engage in population health assessment and surveillance. ORBSS is intended to support the health units in meeting these requirements by providing local data specific to a broad range of issues of public health importance. Through this data, health units would be able to plan programs and services that are informed by evidence, and respond effectively to current and evolving public health conditions. Ontario Public Health Standards Foundational Standard Public health programs and services that are informed by evidence are the foundation for effective public health practice. Evidence-informed practice is responsive to the needs and emerging issues of the health unit and uses the best available evidence to address them. Population health assessment, surveillance, research, and program evaluation generate evidence that contributes to the public health knowledge base and ultimately improves public health programs and services. Goal Public health practice responds effectively to current and evolving conditions, and contributes to the public s health and well-being. The ORBSS Advisory Committee is committed to exploring options for developing a provincewide risk and behaviour surveillance system that allows for local flexibility and engagement. The committee believes that the system should: Source: Ontario Public Health Standards, 2008: pgs be designed to provide both local and provincial estimates allow for seamless data sharing among key stakeholders be aligned to support applied public health research for policy decisions and provincial data needs play an active role in supporting health units in achieving the Foundational Standard Through a provincial-level risk and behaviour surveillance system, OAHPP would be better positioned to: (i) support health units in strengthening their surveillance and health assessment efforts, (ii) respond to provincial policy and data-related requests and directives, and (iii) provide scientific and technical advice on a range of public health issues. Environmental scan The ORBSS Advisory Committee conducted an environmental scan of risk and behavior surveillance systems in Ontario. The scan included a review of: Aboriginal Children s Survey (ACS) Discussion paper: Developing the foundations for an Ontario Risk and Behaviour Surveillance System 4

5 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 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). Table 1 provides a summary of the strengths and limitations of these key systems. The committee also considered other scans and overview documents, including an environmental scan of regional risk factor surveillance 3, an international scan of local-level chronic disease risk factor surveillance systems 4 conducted by the Canadian Alliance for Regional Risk Factor Surveillance, a recently released White Paper on Surveillance and Health Promotion 5 by the International Union for Health Promotion and Education Global Working Group of the World Alliance for Risk Factor Surveillance, and the Behavioural Risk Factor Surveillance System, 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 as they did not focus on the surveillance of risks or behaviours. Specifically these were: intellihealth Ontario Ontario Health Study SmartRISK The scan confirmed that Ontario lacks a centralized and comprehensive provincewide risk and behaviour surveillance system. However, the many existing risk and behaviour surveillance systems in Ontario represent excellent work that can be leveraged and augmented through the cultivation of partnerships and centralized support. Despite the number of available surveys and surveillance systems that capture ongoing population-level risk and behaviour information for Ontario, a number of gaps in surveillance capacity continue to 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. 3 CARFSS ESI-WG, (October 2009), Environmental Scan of Regional Risk Factor Surveillance Phase 1 Final Report. 4 CARFSS ESI-WG, (August 2009), International Scan of Local-Level Chronic Disease Risk Factor Surveillance Systems. 5 IUHPE WARFS GWG (July 2010), White Paper on Surveillance and Health Promotion DRAFT for IUHPE Geneva Conference. Discussion paper: Developing the foundations for an Ontario Risk and Behaviour Surveillance System 5

6 Framework The overall development of risk factor surveillance for health promotion and disease prevention is driven by the requirements of the OPHS. However, current systems have developed without an overall conceptual framework or strategic policy on surveillance. This includes consideration of the overall management and co-ordination of provincial risk factor surveillance. It also includes consideration of supportive legislation that balances the needs of the public health practice, policy and research, and embeds the use of the information in the decision-making process. Coverage Gaps exist both geographically and for specific subpopulations. Declining response rates require innovation in survey modes to ensure the inclusion of subpopulations. 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 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. Content Surveillance systems must be both flexible, to accommodate emerging issues, and consistent, to support trend analysis. Most systems have established a balance between flexibility and consistency. RRFSS provides more flexibility to add or tailor content on the health unit level than other systems, such as CCHS or OSDUHS. Most systems focus on individual risk factor surveillance. Systems like SHES that monitor community risk factor surveillance in work, school and built environments, or monitor environmental risks (e.g. noise pollution, contaminants), remain largely underdeveloped. Linkage Opportunities for linkage or ecological analysis using multiple systems provide added value for surveillance. Some systems, such as RRFSS, provide three-digit postal codes that permit geographic visualization or neighbourhoodlevel analysis. Others, like CCHS, permit individual record-level linkage for specified users and projects. No overall approach exists to link risk factor surveillance data in Ontario. Action Ontario s risk and behaviour surveillance systems have historically focused on data collection without investing in other aspects of surveillance, such as analysis and interpretation, report dissemination and action. Every system we reviewed incorporated some degree of analysis, dissemination and knowledge exchange. However, it was difficult to identify whether these approaches led to the use of data in decision-making. CCHS provides a range of data products through the web. OSDUHS provides standard reports with trend analyses, whereas RRFSS provides only minimal centralized analysis and reporting of key indicators. On the other hand, some health units produce extensive tailored analyses of RRFSS data, with the result being a documented impact on local decision-making. Discussion paper: Developing the foundations for an Ontario Risk and Behaviour Surveillance System 6

7 Sustainability Surveillance systems must be adequately resourced over time to support decision-making through the monitoring of trends and emerging issues. Some systems, such as SHAPES-Ontario, SHES and the Infant Feeding Survey, 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. Discussion paper: Developing the foundations for an Ontario Risk and Behaviour Surveillance System 7

8 Table 1: Summary of strengths and limitations of key Ontario surveillance systems Surveillance system Overview Strengths Limitations Aboriginal Children s Survey (ACS) Assesses early development of aboriginal children (North American Indian, Métis, Inuit and off-reserve First Nations) on a wide range of topics, including breastfeeding, physical activity, height and weight, fruit and vegetable consumption, and chronic conditions. Administered by Statistics Canada. Developed by Statistics Canada and aboriginal advisors from across the country. Conducted in partnership with Human Resources and Social Development Canada. Conducted in 2001 (for children zero to 14 years of age) and 2006 (for children zero to five years of age). Large, cross-sectional, parentreported survey by telephone or personal interview in remote regions. Sample of 17,000 from across Canada. Survey was designed to address the data gap on aboriginal children, and provide information on the motor, social and cognitive development of young aboriginal children. Questions were translated into seven aboriginal languages. Anticipated to be repeated by Statistics Canada every five years. Survey development included direct participation of parents, front line workers, early childhood educators, researchers, various aboriginal organizations and others. A Technical Advisory Group, consisting of specialists in aboriginal early childhood development, was established to provide guidance on the survey development. Aboriginal people have been hired and trained as interviewers and for other survey-related positions. Documentation and summary results for common health indicators are available on the Statistics Canada website for national, provincial and territorial level. Sample is too small to have health unitlevel estimates. Some community-level data will be available for those areas with large aboriginal populations. Data will be available for each of the four Inuit Land Claim regions. Data will also be available for certain census metropolitan areas in Canada. Record-level data not routinely sought by or shared with health units. Subject to self-reported biases. Discussion paper: Developing the foundations for an Ontario Risk and Behaviour Surveillance System 8

9 Table 1 (continued): Summary of strengths and limitations of key Ontario surveillance systems Surveillance system Overview Strengths Limitations Aboriginal Peoples Survey (APS) General social survey of Aboriginal Peoples (North American Indian, Métis, Inuit and off-reserve First Nations) on a wide range of topics, including health-specific issues such as physical activity, height and weight, smoking and drinking. Aboriginal people are involved in all aspects of the survey, including content design. Many were hired and trained as interviewers or for other survey-related positions. Translated into 20 aboriginal languages and additional interpreters available. Regional supplements incorporated. Sample is too small for health unit-level estimates. Record-level data not routinely sought by or shared with health units. Subject to self-reported biases. Administered by Statistics Canada every five years (1991, 2001 and 2006). Includes aboriginal children and youth (six to 14 years of age) and aboriginal people (15 or more years of age). Large, cross-sectional, selfreported (or parent-reported for children six to 14 years of age) survey by telephone or personal interview in remote regions sample: Canada 48,921; Ontario 7,808. Funded by a consortium of federal departments, including Indian and Northern Affairs Canada, Human Resources and Social Development Canada, Health Canada, the Canada Mortgage and Housing Corporation and Canadian Heritage. Anticipated to be repeated every five years. All provinces and territories included. Documentation and summary results for common health indicators available on Statistics Canada website. Developed by Statistics Canada in collaboration with national aboriginal organizations. A representative from each of the five national aboriginal organizations is part of the survey s Implementation Committee. Discussion paper: Developing the foundations for an Ontario Risk and Behaviour Surveillance System 9

10 Table 1 (continued): Summary of strengths and limitations of key Ontario surveillance systems Surveillance system Overview Strengths Limitations Better Outcomes Registry and Network Ontario (BORN-Ontario) (formerly the Ontario Perinatal Surveillance System) Integrates data from five maternal and infant-related databases to provide information that helps monitor, evaluate and plan maternal, child and youth health services across the provincial health-care system. Began January Incorporates former Ontario Perinatal Surveillance System. Prescribed Registry under Ontario s Personal Health Information Protection Act using its legacy name, the Ontario Perinatal Surveillance System. Collects information on all hospital and most non-hospital births across the province, including some maternal/child risk factors. Hospital birth capture reached 100 per cent in November 2009, which will allow for analysis within and between health units. Completed summary report for 2008 data and continue to align indicators with OPHS. Children s Hospital of Eastern Ontario provided founding support and sponsorship, while ongoing funding is provided by the Ministry of Health and Long-Term Care. Governance structure includes a scientific advisory committee with one public health representative. Privacy concerns may limit health unit access to real-time record-level data. BORN-Ontario proposing that all public health units be provided with a modified standard dataset. Ability to respond to public health needs, such as enhanced socio-demographics, has not yet been tested. Discussion paper: Developing the foundations for an Ontario Risk and Behaviour Surveillance System 10

11 Table 1 (continued): Summary of strengths and limitations of key Ontario surveillance systems Surveillance system Overview Strengths Limitations Canadian Community Health Survey (CCHS) Designed to collect information related to health status, health-care utilization and health determinants. Includes Canadian household population 12 years and older. Large, cross-sectional, selfreported survey at the health unit level. Complex sample design, stratified by province and health unit. Repeated cross-sectional survey every two years. Changed to continuous data collection in Full provincial coverage by health unit. Primarily funded by Statistics Canada with no additional cost to health unit. Collection began in and is anticipated to continue. Each health unit receives Ontario s recordlevel data (Ontario Share File) annually through the Ministry of Health and Long- Term Care. Summary results for common health indicators available on Statistics Canada website and comparable across Canada. Survey documentation and bootstrap analysis files widely available to facilitate data use at health unit level. Balances ongoing core surveillance needs with episodic population health assessment of areas of interest through four types of content: Core, Theme, Optional and Rapid Response. Collection of health card number can facilitate record linkage with other data systems. Content is relatively fixed, limiting health unit-specific content and response to emerging public health issues. Subjected to self-reported biases. Sample excludes some subpopulations (i.e. children younger than 12 years of age, onreserve, institutionalized, military and some remote populations). Sample size may be too small to report for smaller geographical areas, subpopulations or infrequent events. Sample stratification by health unit creates some difficulty for Local Health Integration Network comparisons. Also, health unit/local Health Integration Network boundary differences have led to provincial-level co-ordination of optional content selection, thus limiting individual health unit flexibility of selection in Ontario. Limited central analysis of Ontario s optional content. Centralized decision-making with limited input into content selection and overall survey priorities through provincial representation on Population Health Surveys Advisory Committee and ad hoc consultation. Discussion paper: Developing the foundations for an Ontario Risk and Behaviour Surveillance System 11

12 Table 1 (continued): Summary of strengths and limitations of key Ontario surveillance systems Surveillance system Overview Strengths Limitations Canadian Health Measures Survey (CHMS) Designed to provide reliable estimates at the national level and by age group for selected health conditions (e.g. obesity), characteristics and environmental exposures based on direct health measures; ascertain relationships among risk factors, health promotion and protection behaviours, and health status; and establish a biorepository of biospecimens (urine, blood, DNA) from a representative sample of Canadians to be used for future research and surveillance. Includes Canadian household population six to 79 years of age. Started in Survey includes personal interviews and physical health measures. One of a few surveys in Canada that collects direct measures, thus providing more reliable estimates. Includes environmental exposure data that is largely unobtainable on a population level. Primarily funded by Statistics Canada with no additional cost to health unit. Collection began in 2007 and is anticipated to continue. Summary results for common health indicators available on Statistics Canada website at the national level. Survey documentation is widely available on the Statistics Canada website. Collection of postal code and health card number can facilitate record linkage with other data systems. Little local public health involvement in survey development. Sample size (approximately 5,000 for all of Canada) is too small to report on the health unit level. Sample excludes some subpopulations (i.e. children younger than six years of age, onreserve, institutionalized, military and some remote populations). Discussion paper: Developing the foundations for an Ontario Risk and Behaviour Surveillance System 12

13 Table 1 (continued): Summary of strengths and limitations of key Ontario surveillance systems Surveillance system Overview Strengths Limitations First Nations Regional Longitudinal Health Survey (RHS) Collects information based on Western and traditional understandings to explore factors affecting the health and well-being of First Nations peoples. Includes healthspecific issues such as physical activity, height and weight, smoking and nutrition. Completed two phases in and Includes First Nations peoples living on-reserve (all ages) across Canada. In Ontario, 35 of 134 communities participated (2.9 per cent of population). Longitudinal, self-reported (or knowledgeable person for children zero to 11 years of age) survey by personal interview. Fully directed and controlled by First Nations peoples. Developed to fill information gap, as First Nations peoples living on reserve were excluded from major national health surveys, such as CCHS. National questions included in all participating communities. Additional questions may be incorporated at the regional level. Anticipated to be repeated every four years, with next phases in 2011 and Documentation and summary results on national level available on website. The Assembly of First Nations Chiefs Committee on Health appointed the First Nations Information Governance Committee to provide oversight and governance over the administration of the survey. Ten independent regional partners co-ordinate the survey in their respective regions. Does not yet represent all First Nations communities. Each region is responsible for reporting independently. No Ontario region results currently posted on website. Record-level data not generally shared outside of First Nations or with health units. Primary funding contributor is First Nations Inuit Health Branch of Health Canada. Discussion paper: Developing the foundations for an Ontario Risk and Behaviour Surveillance System 13

14 Table 1 (continued): Summary of strengths and limitations of key Ontario surveillance systems Surveillance system Overview Strengths Limitations Infant Feeding Survey No consistent or overall approach in Ontario health units to capture breastfeeding initiation, duration and exclusivity of breastfeeding. A 2009 Ministry of Health Promotion review showed that 28 of 36 health units had completed an infant feeding survey, with four additional health units anticipating the completion of a survey in Each health unit able to develop its own approach to infant feeding surveillance. A collaborative health unit initiative began in 2007 to develop survey questions that all health units could potentially use for measuring breastfeeding in their area, promoting a standard approach. Currently, no standard approach to infant feeding surveys across health units. Due to the size of the subpopulation, precise health unit estimates are only available for those that can launch their own surveys. Infant feeding surveillance within health units relies on project-based funding or internal resources and expertise. Infant feeding surveys were done in the majority of health units around due to an availability of funding for Early Child Development, but many have not been repeated and do not have any trend data. Discussion paper: Developing the foundations for an Ontario Risk and Behaviour Surveillance System 14

15 Table 1 (continued): Summary of strengths and limitations of key Ontario surveillance systems Surveillance system Overview Strengths Limitations Ontario Student Drug Use and Health Survey (OSDUHS) Supports regional and provincial-level planning in Ontario through the collection of information about health and risk behaviour, attitudes and beliefs of Ontario children and youth, primarily related to alcohol, tobacco and other drug use, as well as indicators of mental and physical health. Includes students in publicly funded schools, grades 7 to 12. Paper-based survey collected every two years within schools. Selfadministered, repeated and cross-sectional. Survey administered by Institute of Social Research, York University, on behalf of the Centre for Addiction and Mental Health. Designed and funded for provincial and gradelevel estimates. Funded by Centre for Addiction and Mental Health (indirectly by Ministry of Health and Long-Term Care). Trend analysis available. A cycle is completed every two years. 17 cycles have been conducted since Balances ongoing surveillance needs with areas of interest through two questionnaire forms. Most of questionnaire based on valid and reliable scales from other student surveys. Well-developed relationship with schools and school boards enables ongoing collection within school systems. Response rate is still high (65 per cent). Attributed to school-based collection. Schools given a report in which provincial data is provided as a comparison. One year after, record-level data is available for public use. In , six health units added public healthspecific content and purchased oversample in order to have health unit-level estimates. Anticipated that four health units will purchase oversample in Central analysis is conducted by Centre for Addiction and Mental Health and summary reports are posted to their website. Lack of health unit-level estimates limits ability to meet health unit needs. Excluded are youth that have dropped out of school, are institutionalized or enrolled in private schools, or are living on reserves, military bases or in far northern regions. Survey available in English and French only. Centralized decision-making processes through Centre for Addiction and Mental Health. Each survey form includes core content and other form-specific content, thus reducing the sample size by half for some content areas. Survey content and documentation is posted on Centre for Addiction and Mental Health website. Discussion paper: Developing the foundations for an Ontario Risk and Behaviour Surveillance System 15

16 Table 1 (continued): Summary of strengths and limitations of key Ontario surveillance systems Surveillance system Overview Strengths Limitations Rapid Risk Factor Surveillance System (RRFSS) Supports health unit-level public health planning through the collection of information on healthrelated conditions, behavioural risk factors, attitudes, awareness, perceptions and knowledge. Includes household population 18 years of age and older. 20-minute household telephone survey, selfreported, cross-sectional, at the health unit level. Survey conducted by Institute of Social Research, York University, on behalf of each participating health unit. Ongoing monthly data collection changed to four month cycles (three per year) in Health unit-specific content that is flexible and relevant for local public health planning. Any participating health unit can develop a module on a topic of interest. Rapid development of content permitted during emergencies. Dataset every four months. Balances ongoing core surveillance needs with areas of interest to specific health unit through two types of content: Core/Rotating Core and Optional. Range of sample size available per health unit depends on health unit s ability to fund. Typical sample 1,200 per year. Each participating health unit receives recordlevel data, including all other health units data. Decentralized, collaborative processes facilitate shared decision-making among participating health units, as well as local autonomy. Survey content and documentation (i.e. data dictionaries) is collaboratively developed and posted on RRFSS website. Innovation is informally shared by health unit representatives at regional group meetings, and more formally shared at workshops and conferences. Collection of three-digit postal codes can facilitate linking with other data, as well as mapping and spatial analysis. Incomplete provincial coverage. 19 of 36 Ontario health units participate, or approximately 80 per cent of Ontario s population. Survey available in English and French only. Central analysis funded equally by participating health units and summary results for core content posted on RRFSS website. Analysis of optional content completed by health unit, with limited comparisons between jurisdictions. Health unit participation has varied by year since initial pilot in Lack of provincial sample limits ability to meet provincial needs. Funded by participating health units, with equal contributions for central support, including the RRFSS co-ordinator. Many health units challenged by resource needs for collection costs, as well as the time and effort required to complete analysis and sustain collaborative processes. Declining telephone response rates and cell phone usage indicate need for multimodal approaches. Process for ongoing validation and reliability testing of modules required. Discussion paper: Developing the foundations for an Ontario Risk and Behaviour Surveillance System 16

17 Table 1 (continued): Summary of strengths and limitations of key Ontario surveillance systems Surveillance system Overview Strengths Limitations School Health Action Planning and Evaluation System Ontario (SHAPES- Ontario). Designed to provide evidence for populationbased intervention planning, evaluation and field research on youth. Modules focused on smoking, physical activity, healthy eating, mental fitness and school environment. Included individual, machine-readable questionnaire validated for grades 5 to 12 and some organizational-level data through a school administrator survey to assess school policies and programs. Incorporated a number of knowledge exchange activities with health units and schools. Open to the creation of new modules that deal with other areas of interest (e.g. bullying). School-specific, computer-generated feedback report provided to each participating school. Health units able to access reports and data for schools within their districts. Aggregated data disseminated with all identifying information (student and school level is removed). Central analysis conducted by University of Waterloo. Conducted in only a small number of health units in Ontario. No overall provincial estimates generated. Funding was project-specific and timelimited. Project is not currently funded in Ontario. Funded by Canadian Institutes of Health Research and the Sociobehavioural Cancer Research Network. Little trend analysis available. May include students and their schools, grades 5 to 12. Specific grades may vary. Created by the Propel Centre for Population Health Impact at the University of Waterloo. Discussion paper: Developing the foundations for an Ontario Risk and Behaviour Surveillance System 17

18 Table 1 (continued): Summary of strengths and limitations of key Ontario surveillance systems Surveillance System Overview Strengths Limitations School Health Environment Survey (SHES) Designed to assist schools in further promoting healthy eating and physical activity, as well as to support Ontario s Action Plan for Healthy Eating and Active Living. Assessed aspects of the school environment, including promotion of healthy eating and physical activity, as important aspects of health promotion in schools. Developed in collaboration with health units and in consultation with other public health professionals. Intended to represent sample of 500 elementary and secondary schools. Included a feedback report to support continuous improvement in the school community. Survey content, documentation and overall results are posted on University of Waterloo SHES website. Central analysis conducted by University of Waterloo. Survey designed to facilitate a partnership between schools and public health units. Incorporated a number of knowledge exchange activities with health units and schools. Funding was project-specific and timelimited. Project is not currently funded in Ontario. No trend analysis available. Developed by the Public Health Research, Education and Development (PHRED) Program (Sudbury & District Public Health) and the Centre for Behavioural Research and Program Evaluation at the University of Waterloo, with one-time funding from the Ministry of Health Promotion. Discussion paper: Developing the foundations for an Ontario Risk and Behaviour Surveillance System 18

19 Draft vision, mission, values and goals of ORBSS Vision Public health practices and decisions are informed by a provincewide risk and behaviour surveillance system. The ORBSS 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 idea of ORBSS is to provide local health units, OAHPP, the Government of Ontario and others with information on behaviour and risk factors in Ontario to allow for informed public health practices and decisions. Mission A co-ordinated provincewide 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. To achieve the vision that public health practices and decisions are informed by a provincewide risk and behaviour surveillance system, ORBSS will help health units, OAHPP, the Government of Ontario and others plan and implement programs and services that meet the OPHS requirements by providing relevant evidence. Values Equitable, responsive, sustainable and collaborative have been identified as the four values of ORBSS. As the key, underling qualities that will guide the operation of ORBSS design and implementation, these values present priorities for decision-making, particularly when resources are scarce. Equitable ORBSS will strive to ensure that the all health units in Ontario are represented in the surveillance system and that all 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 ORBSS will strive to respond to current and emerging public health events and the needs of health units by providing high-quality data in a flexible manner. Sustainable ORBSS will strive to build the foundation for a surveillance system that can continue to meet the needs of public health units and the Government of Ontario. Discussion paper: Developing the foundations for an Ontario Risk and Behaviour Surveillance System 19

20 Collaborative ORBSS will strive to work effectively and efficiently with other surveillance systems, and to mutually build on existing sources. Goals Given the context for the planning and development of ORBSS (described above in Context ), the advisory committee has identified the following primary goals for ORBSS: 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 provincewide estimates, and providing infrastructure support to eliminate duplication of work in order to maximize access to information in a timely fashion. Discussion paper: Developing the foundations for an Ontario Risk and Behaviour Surveillance System 20

21 Strategic plan overview Vision Public health practices and decisions are informed by a provincewide risk and behaviour surveillance system Mission A co-ordinated provincewide 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 decision-making Goals Inform program planning Enhance policy development Enable the identification of priority populations Inform program performance management Use resources efficiently Values Equitable Responsive Sustainable Collaborative Analysis of existing risk and behavior surveillance systems in Ontario The ORBSS Advisory Committee evaluated the surveillance systems and surveys reviewed through their environmental scan in the context of ORBSS 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 in all areas. Discussion paper: Developing the foundations for an Ontario Risk and Behaviour Surveillance System 21

22 Next steps The ORBSS Advisory Committee is seeking input to guide the development of their proposal for a model for ORBSS. An electronic survey will be posted from late-july to mid-august 2010 on the ORBSS website to gather feedback on the draft vision, mission, values and goals of ORBSS. Health units are also being asked to complete a survey on their needs and priorities in relation to risk and behavior surveillance. The results of these surveys will help guide the advisory committee in exploring models for a provincewide risk and behavior surveillance system that allows for local flexibility and engagement. Once the committee has put together their proposal for a model for ORBSS, it will be shared with the community and input will be sought through another survey. The ORBSS website will continue to provide updates regarding the work of the advisory committee. The website can be accessed at Discussion paper: Developing the foundations for an Ontario Risk and Behaviour Surveillance System 22

23 APPENDIX A: Ontario environmental scan summary of key systems for ORBSS by ORBSS values Surveillance system Overview ORBSS values Responsive Equitable Sustainable Collaborative Aboriginal Children s Survey (ACS) Overall assessment Assesses early development of aboriginal children (North American Indian, Métis, Inuit and offreserve First Nations) on a wide range of topics, including breastfeeding, physical activity, height and weight, fruit and vegetable consumption, and chronic conditions. Administered by Statistics Canada. Conducted in 2001 (for children zero to 14 years of age) and 2006 (for children zero to five years of age). Large, cross-sectional, parent-reported survey by telephone or personal interview in remote regions. Survey was designed to address the data gap on aboriginal children, and provide information on the motor, social and cognitive development of young aboriginal children. Questions were translated into seven aboriginal languages. Documentation and summary results for common health indicators are available on the Statistics Canada website for national, provincial and territorial level. Sample is too small to have health unit-level estimates. Some community-level data will be available for those areas with large aboriginal populations. Data will be available for each of the four Inuit Land Claim regions. Data will also be available for certain census metropolitan areas in Canada. Record-level data not routinely sought by or shared with health units. Developed by Statistics Canada and aboriginal advisors from across the country. Conducted in partnership with Human Resources and Social Development Canada. Anticipated to be repeated by Statistics Canada every five years. STRENGTH LIMITATION STRENGTH STRENGTH Survey development included direct participation of parents, front line workers, early childhood educators, researchers, various aboriginal organizations and others. A Technical Advisory Group, consisting of specialists in aboriginal early childhood development, was established to provide guidance on survey development. Aboriginal people have been hired and trained as interviewers and for other survey-related positions. Discussion paper: Developing the foundations for an Ontario Risk and Behaviour Surveillance System 23

24 Surveillance system Overview ORBSS values Responsive Equitable Sustainable Collaborative Aboriginal Peoples Survey (APS) General social survey of Aboriginal Peoples (North American Indian, Métis, Inuit and offreserve First Nations) on a wide range of topics, including healthspecific issues such as physical activity, height and weight, smoking and drinking. Administered by Statistics Canada every five years (1991, 2001 and 2006). Includes aboriginal children and youth (six to 14 years of age) and aboriginal people (15 or more years of age). Aboriginal people are involved in all aspects of the survey, including content design. Translated into 20 aboriginal languages and additional interpreters available. Regional supplements incorporated. All provinces and territories included. Documentation and summary results for common health indicators available on Statistics Canada website. Sample is too small for health unit-level estimates. Record-level data not routinely sought by or shared with health units. Funded by a consortium of federal departments, including Indian and Northern Affairs Canada, Human Resources and Social Development Canada, Health Canada, the Canada Mortgage and Housing Corporation and Canadian Heritage. Anticipated to be repeated every five years. Developed by Statistics Canada in collaboration with national aboriginal organizations. A representative from each of the five national aboriginal organizations is part of the survey s Implementation Committee. Aboriginal people are involved in all aspects of the survey. Many were hired and trained as interviewers or for other survey-related positions. Large, cross-sectional, self-reported (or parent-reported for children six to 14 years of age) survey by telephone or personal interview in remote regions sample: Canada 48,921; Ontario 7,808. Overall assessment STRENGTH LIMITATION STRENGTH STRENGTH Discussion paper: Developing the foundations for an Ontario Risk and Behaviour Surveillance System 24

25 Surveillance system Overview ORBSS values Responsive Equitable Sustainable Collaborative Better Outcomes Registry and Network Ontario (BORN-Ontario) (formerly the Ontario Perinatal Surveillance System) Integrates data from five maternal and infant-related databases to provide information that helps monitor, evaluate and plan maternal, child and youth health services across the provincial health-care system. Prescribed Registry under Ontario s Personal Health Information Protection Act using its legacy name, the Ontario Perinatal Surveillance System. Ability to respond to public health needs, such as enhanced sociodemographics, has not yet been tested. Collects information on all hospital and most nonhospital births across the province, including some maternal/child risk factors. Hospital birth capture reached 100 per cent in November 2009, which will allow for analysis within and between health units. Completed summary report for 2008 data and continue to align indicators with OPHS. Children s Hospital of Eastern Ontario provided founding support and sponsorship, while ongoing funding is provided by the Ministry of Health and Long-Term Care. Governance structure includes a scientific advisory committee with one public health representative. Privacy concerns may limit health unit access to realtime record-level data. BORN-Ontario proposing that all public health units be provided with a modified standard dataset. Overall assessment LIMITATION STRENGTH STRENGTH LIMITATION Discussion paper: Developing the foundations for an Ontario Risk and Behaviour Surveillance System 25