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Case study: Health policy needs data sharing

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A story about the benefits of sharing Government-commissioned, publicly-funded data for policy development

By John Glover, Diana Hetzel and Sarah Olesen

Planning for health services in Australia must be based on the needs of our population. Need can only be understood by collecting population-based data. This includes information about the prevalence of health conditions, who uses existing services for those conditions ('met need'), and who does not or cannot access appropriate services ('unmet need'). Further information about where people live is necessary because most health services in Australia are distributed and vary by geographic area.

Met and unmet need for services can differ widely across these areas. Some members of our population still experience significant barriers to accessing health care and long waiting periods for some services. We know that being unable to access timely treatment for health conditions contributes to personal and family suffering, and further worsening of health. Poor outcomes for the community are also likely to occur, namely workplace absenteeism and loss of productivity.

Australian Government agencies routinely collect administrative data on rates of health service use for individuals and service providers; namely, Medicare data. The Government also commissions population surveys to provide an evidence base for health policies. Some surveys assess the prevalence of health conditions; for example, the Australian Bureau of Statistic's National (now Australian) Health Surveys and National Survey of Mental Health and Wellbeing. Others seek information about our education, employment, income circumstances, and the places we live. The Census is a well-known example of the latter.

Health policies refer extensively to findings of survey data to support changes and new programs. Many of these analyses are conducted by researchers outside of Government in the fields of epidemiology, health economics, and clinical practice, who have been able to access the data. These researchers bring expertise to ensure accurate estimates and interpretation of often complex data.

The Social Health Atlas of Australia series is a prime example of the benefits of sharing Government-commissioned, publicly-funded data for policy development. The Atlas was first published by John Glover and colleagues from the Public Health Information Development Unit (PHIDU) in 1992; and is now an online resource that is updated annually. It incorporates data for population demography, social and economic indicators (including early childhood development, education, disability, income and employment), health status and risk factors, life expectancy and deaths, and health service use, which are available in a range of small area geographies. These data are collated as a single and unique source of information about Australia's health – and health inequalities – according to where we live.

Recent advances in Geographical Information Systems and presentation software have allowed PHIDU to develop a facility for users to map their own data. This includes an interactive graphics package that highlights inequalities (both absolute and relative) in health, and the wider determinants of health, across Australia. All data and the analyses of inequality are freely available via the PHIDU website. For example, it provides data that show health service use for specific sub-groups of the population within small areas of Australia, such as people who participate in the National Bowel Cancer Screening Program.

These products are consistently accessed by a wide range of people across Australia and internationally, including: policy-makers, planners, practitioners, managers, civil society groups, students, researchers and community members. They come from sectors as diverse as health, welfare, education and child care, planning, disability, housing, Aboriginal community-controlled organisations, and economics, and across all levels of government.

Via this work, PHIDU has extended the Australian evidence base around:

  • the factors that determine health, development and wellbeing
  • the notions of 'inequality', 'inequalities in health' and 'inequalities in the determinants of health'
  • the relationship between socioeconomic status/position and health across the life course for populations
  • examples of the impact of social and economic inequalities on health.

The overall aim of this work has been to direct attention to areas where we might better address our ameliorative efforts through policy and program development, and the monitoring of population outcomes.

Researchers, practitioners and communities must have access to public, health-relevant information through data-sharing mechanisms such as the Atlas to continue improving the health of all Australians. Access to such data enables these groups to contribute to the evidence base that guides policy and program development, and monitors its progress.

The next crucial piece of evidence needed concerns which specific services people are using in their communities. This would enable service providers to prioritise services that are in greatest demand in their area. However, access to tax-payer-funded data about these services provided via the Medicare Benefit Schedule (MBS) and Pharmaceutical Benefits Scheme (PBS) is not currently possible. Authors of the Social Atlas and other researchers continue to seek access to MBS and PBS data to inform more effective and efficient health service delivery where it is needed.