National Preventive Health Surveillance in Australia
National Preventive Health Surveillance in Australia:
a guide to understanding governance and coordination
December 2013
Acknowledgements
The Agency’s National Preventive Health Surveillance Working Group which included representation from the Department of Health & Ageing, the Australian Bureau of Statistics, the Australian Institute of Health & Welfare, Food Standards Australia New Zealand and the Public Health Information Development Unit (University of Adelaide) provided valuable advice on the development of this report.
The Agency also consulted with many other stakeholders including the National Health and Medical Research Council, the National Health Performance Authority, the Australian Research Council and the Department of Industry.
Project Management: Dr Helen Cameron and Dr Julia Tresidder
Research: Fatima Ghani
Editorial assistance: Robert Long and Auli Oravala.
© Commonwealth of Australia 2013
This work is copyright. Apart from any use permitted under theCopyright Act 1968, no part may be reproduced by any process without prior permission from the Australian National Preventive Health Agency.
Published by the Australian National Preventive Health Agency
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Contents
Acknowledgements 2
Executive Summary 4
Introduction 6
Scope and purpose 6
International context 7
National context 8
Australia’s arrangements as a surveillance system 10
Governance and coordination 10
1. Health Surveillance Infrastructure 15
2. Resourcing of data collection and collation 17
3. Data collection 17
4. Collation & custodianship of national collections 18
5. Funding for national data analysis 19
6. Stakeholder data access & analysis 20
7. Data reporting 21
8. Surveillance-informed policy 23
Implications 24
Investment for preventive health surveillance nationally 24
Comparative national data for developing and implementing preventive health policy 25
Improved access to data and linked data for further analysis and research 26
Appendix A: Acronyms 27
Appendix B: National Healthcare Agreement Indicators and benchmarks relevant to prevention 29
Appendix C: National Partnership Agreement on Preventive Health performance measures 30
Appendix D: Selected preventive health surveillance data collections 32
References 39
Executive Summary
Introduction
The National Preventive Health Surveillance Forum held in Canberra April 2012 recommended clarity in governance of surveillance as a first step in considering how Australia could achieve improvements in its surveillance for preventive health. Given the complexity of Australia’s preventive health surveillance arrangements, descriptions of the decision-making in surveillance investment, technical operation, coordination between different levels of government and contributions of different sectors are warranted.
This paper describes the national preventive health surveillance arrangements, component parts, and their governance and coordination, intended to assist relevant stakeholders:
· plan and support investment processes for preventive health surveillance nationally
· move towards national consistency of methods to enhance national reporting by amalgamation of state and territory data collections
· improve access to data and linked data for further analysis and research
National system drivers
The framework used for performance reporting on the broad health reform process undertaken since 2008 drove further investment in surveillance and enabled reporting on outcomes for preventive health.
Australia has planned over the last decade for improvements in health surveillance systems and these improvements have enabled greater capacity for preventive health surveillance and monitoring. Recent investment has been realised with new preventive health data from the 2011-13 Australian Health Survey released. These data were used to measure outcomes from previous preventive health efforts and can be used to inform future priorities at both a national and state and territory level.
Regular reviews of surveillance arrangements and investments are required to meet changing needs and technologies. This paper describes the Ministerial committee structure and national agreements that operated for national surveillance governance and currently has responsibility for national issues in 2013.
System components
An effective surveillance system requires:
· regular systematic data collection and analysis to monitor changes over time
· agreed analysis plans which support consistent reporting
· publication of data reports that disseminate surveillance information to inform preventive health policy.
The operational steps undertaken in Australia for surveillance can be described and placed in a cyclical model to indicate that policy processes can lead to review of policy needs and re-investment in surveillance infrastructure and new data standards.
Categories of key participants in these arrangements include:
· national policy drivers, including national committees and agreements
· data collection agencies
· investors
· analysis and reporting mechanisms and agencies
· research organisations, such as universities and non-government organisations.
Essential support includes legislation, ethics and privacy guidelines, scientific and technical expertise and stakeholder consultations.
In addition to national collections that are protected by relevant Commonwealth legislation, there are also surveillance systems that operate separately within states and territories under their respective legislation and according to their policies and investments. National data reporting may comprise collations of state and territory data such as used by the AIHW and ABS, or reports based on national survey collections, such as the National Health Survey and the National Drug Strategy Household Survey. Reports on longitudinal studies can also be of national significance, including those that draw their samples only from within one state or territory.
Key Issues
Key issues regarding investment for national preventive health surveillance including data linkage infrastructure include:
· using administrative data effectively and efficiently that is already collected regularly by the Commonwealth and states and territories.
· continuing to invest in key national survey collections while being mindful of respondent burden, the high cost of collecting detailed health data nationally, and the rate of change in health indicators as factors that guide decision making about investment in data collections relevant to preventive health.
· continuing to invest in analysis of key collections including the next National Health Survey by the ABS which is planned for 2014-2015. This is based on one of the survey modules implemented within the Australian Health Survey during 2011-13.
· assessing the sustainability of national investment in the collection of detailed health risk behaviour and biomedical data remains an area for ongoing discussion. Currently there is no long term ongoing commitment to its regular collection. There is debate about the ideal frequency of data collection, for example detailed nutrition and physical activity data, given that some indicators have a slow rate of change over time.
· new online health data initiatives, such as the current eHealth initiative, which are not currently set up to make any new data available for research or policy and planning purposes. Future generations may benefit from initiatives that could explore potential use of this data while also protecting the privacy of individuals.
Issues affecting comparative national reporting over time include lack of consistent national guidelines and indicators over time, changes in data collection coding practices, methodology and sampling strategies.
There is an opportunity to improve the accessibility of administrative and survey data collections for research and reporting. Future investment in data access protocols could enhance the use of data and dissemination of the results of any analysis undertaken. Stakeholders other than the data custodians have a legitimate interest in gaining access to publically funded data collections for research and reporting purposes and improved data access protocols could improve timely access to such data. There are many sources of data held both nationally and at state and territory level that, if accessed and analysed, can inform policy and intervention strategies to improve preventive health related practice and ultimately improve the health of Australians.
Further investment could ensure that data access protocols can be implemented in a timely manner. In addition, the continued investment in online data access, analysis tools and accredited data linkage providers should enhance the ability of research organisations to gain access to data for research while still maintaining participants’ confidentiality. Additional investment in streamlined data access for research purposes will result in further information being made available and in turn this may inform Australian policy makers about preventive health risk factors and how these are associated with health outcomes. These data could also be used in evaluations of Australia’s significant investment in preventive health initiatives which will assist to further refine Australia’s preventive health strategies and reduce the burden on frontline services of preventable chronic diseases.
.
Introduction
Preventive health surveillance is a fundamental component of population health improvement, as it can provide timely health information to governments, non-government organisations, research organisations and other parties. Ultimately the use of health data can improve Australia’s strategies to reduce the burden of preventable chronic disease.
Planning for and implementing preventive health policy and programs depends on accurate and timely data. Surveillance is useful for identifying the need for policy interventions as well as measuring the effects of policy implementation and to evaluate programs.
There is no single system of preventive health surveillance in Australia. The population data arrangements are a composite of several systems across different levels of government, organisations and sectors. In conjunction with the formal arrangements for intergovernmental coordination through the Australian Health Ministers’ Advisory Council committee structure, the Commonwealth and the states and territories maintain separate processes in many areas, such as in policy development, data collection and reporting arrangements. Information from other sectors such as education, environment, urban infrastructure, social services and law and justice is also relevant to preventive health policy.
Given the complexity of Australia’s preventive health surveillance arrangements, descriptions of the decision-making in surveillance investment, technical operation, coordination between different levels of government and contributions of different sectors are warranted, and are the focus of this paper.
The Australian National Preventive Health Agency’s (the Agency) Preventive Health Surveillance Forum[1] (April 2012) provided an opportunity to reflect on the strengths of Australia’s data infrastructure and reporting systems, the status of recommendations for improvements formulated over the previous decade, and to prioritise further work to drive improvement still thought important. There was consensus that the primary strength of the current surveillance system is the breadth, depth and quality of the data presently available, but the various challenges that were highlighted have proved difficult to resolve. The Forum recommended that understanding the governance and coordination arrangements may assist in overcoming the barriers highlighted.
It was recommended that the Agency develop a paper which maps the current governance and coordination for preventive health surveillance in Australia for better stakeholder understanding. In response, this paper is intended to assist relevant stakeholders:
· maximise the use of Australia’s health data to benefit the health of all Australians
· plan and support investment processes for preventive health surveillance nationally
· move towards national consistency of methods to enhance national reporting by amalgamation of state and territory data collections
· improve access to data and linked data for further analysis and research.
Scope and purpose
This paper focuses on preventive health surveillance relevant to non-communicable diseases (NCDs), related behavioural risk factors and determinants of health. Governance is defined as the way rules are set and implemented in the process of decision making, as applied to investment, coordination and standard setting for surveillance infrastructure, and access to data. Coordination refers to efforts in reducing duplications and enhancing synergy of investments, standardising or harmonising state and territory surveillance for national reporting and development of national indicators and minimum datasets.
This paper describes the national preventive health surveillance arrangements and component parts. The key steps in surveillance are described along with the national committees, agreements and agencies that are integral to their functioning. The arrangements require much collaboration between agencies and between the Commonwealth and states and territories. Examples of national and other significant data collections and the partnerships that underpin them are used to illustrate how the arrangements work in practice. Particular issues are highlighted, including how health research organisations can access the data collections and suggestions are made for further investment that may be required to facilitate more streamlined access to these data.
This is not a comprehensive description of all the data available in national or other significant collections or individual state/territory surveillance activity, but it complements other sources of information on NCDs and associated risk factors for NCDs, including recent national audits of Australia’s tobacco and alcohol data sets.[2] [3] There is also an audit of preventive health data sets in general that was funded by the Department of Health being conducted by the Public Health Development Information Unit at The University of Adelaide[4]. Detailed descriptions of national and state and territory preventive health surveillance data can be found in these and other audits as well as on government websites.
International context
Australia’s challenges for non-communicable diseases are part of a global challenge as recognised by the United Nations General Assembly on the Prevention and Control of Noncommunicable Diseases and translated into a 2013-2020 Global Action Plan[5] adopted by the WHO 66th World Health Assembly[6] in May 2013 (see Box 1).
The World Health Organization (WHO) recommends the integration of tobacco, alcohol and obesity surveillance programs into regional, national and international programs so that data are comparable and can be analysed at the regional and international levels. At the WHO 66th World Health Assembly, Member States unanimously adopted and supported an omnibus resolution making all governments accountable for progress on NCDs, including:
· the endorsement of the 2013-20 WHO global action plan for the prevention and control of NCDs
· the adoption of the global monitoring framework on NCDs, including 9 global targets and 25 indicators
· the development of a global coordination mechanism by the end of 2013 to coordinate activities and promote engagement of stakeholders (including agencies, governments, NGOs, and the private sector where appropriate) to accelerate global progress on NCDs.
All member countries (including Australia) are required to implement, monitor and report on progress of this Plan. Preparation of data for submission requires high-level political commitment, predictable and sustainable resources and the concerted involvement of national governments and society as a whole.