How to tell the story: a strategy for monitoring sexual and reproductive health data in Australia

This section describes data sources that could be developed to improve the quality, relevance, and coverage of sexual and reproductive health data for the initial priority topics.

This may involve working with data custodians to:

• add new data items
• expand survey modules, or 
• improve data extraction and use from existing systems. 

This approach builds on established infrastructure and supports more consistent and comparable data over time, while minimising the burden on data providers. 

Changes to existing collections can be complex. Constraints may include competing priorities, governance arrangements and the need to maintain consistent time series. Opportunities to add new data items are often limited, and changes may take time to implement and deliver results. Hence, development of existing or planned collections will be targeted and undertaken alongside other strategies to address priority data gaps.

National administrative data

National administrative data are routinely collected as part of health services and government programs. 

They include information recorded during patient care and service use such as:

• hospital records
• MBS services claimed
• PBS data. 

These data support national monitoring of service use, procedures and treatments over time. They provide broad population coverage and are collected routinely, allowing trends to be monitored. However, they are not necessarily designed for population health monitoring. Coverage and data quality can vary, and they may lack clinical detail, as well as information on patient experiences and priority population groups. 

National administrative data collections that contain some sexual and reproductive health data, and which are currently being explored, are included in Table 8.

Survey data and longitudinal studies

Survey data and longitudinal studies collect information directly from people about their health, behaviours and experiences. These data include information not available in administrative data, such as experiences of care and the experiences of people who do not seek care. They can support analysis of changes over time, particularly where surveys are repeated. However, surveys rely on self-reported information and may be affected by recall and reporting biases. They may also have limited sample sizes for some population groups or conditions and are typically collected less frequently than administrative data.

Some large-scale surveys in Australia include sexual and reproductive health questions relevant to the priority topics and may be used to report prevalence. In some cases, they can also act as proxy measures or provide context where high-quality, nationally representative data are not available. These surveys may help to fill part of a data gap – such as indicating prevalence for a condition or experience – but cannot address all data needs. They can be used until more comprehensive, nationally representative data sources are available.

Survey relevance was assessed by reviewing the most recent questionnaires. Surveys that repeat relevant sexual and reproductive health questions over time have been included to support ongoing monitoring. Relevant surveys currently being explored are listed in Table 9.

Opportunities will be explored to expand existing collections by adding data items or through data linkage. However, filling priority data gaps will likely require substantial development across multiple data collections and topics. It is often not feasible to add a large number of new questions to existing surveys because of constraints on survey length and the need to maintain time series. In many cases, existing questions must be removed to accommodate new content. Survey design decisions sit with data custodians and their relevant governance and advisory groups. 

Developing a new survey focused on sexual and reproductive health may be a more effective way to fill many data gaps and incorporate additional priority topics (see National Sexual and Reproductive Health Survey).

National Primary Health Care Data Collection

The lack of nationally consistent primary health care data to support effective population health monitoring, research, policy and planning is well recognised. The AIHW is leading work to fill this gap by developing a National Primary Health Care Data Collection (NPHCDC).

Much sexual and reproductive health care is provided in general practice and community-based settings that are not well captured in existing administrative data sets. The NPHCDC presents an opportunity to understand sexual and reproductive care in primary care settings. 

The NPHCDC aims to establish consistent governance, standards, data collection, quality processes, and reporting across the primary health care sector. Initially, it will focus on collecting, analysing and reporting general practice data, with a view to developing and incorporating other primary health care areas (including nursing, Aboriginal Community Controlled Health Organisations and allied health) as soon as practicable. 

The lack of nationally agreed and implemented data standards is a major barrier to the availability of comprehensive, high-quality primary health care data. 

The AIHW, Primary Health Networks (PHNs) and data extractors are working together on a number of demonstration projects as part of the NPHCDC. These projects test general practice data through assessing data quality, coverage and analytical value prior to national implementation approaches, and harmonising general practice data across extraction systems including aligning clinical terminology and classifications. 

The AIHW will continue to undertake demonstration projects focused on sexual and reproductive health to explore how primary health care data can improve the visibility of selected sexual and reproductive health conditions, management and care pathways, while recognising data limitations. 

These demonstration projects provide a practical way to:

• explore priority sexual and reproductive health data gaps
• refine data definitions and counting rules
• assess fitness for purpose. 

Evidence from recent projects indicates that this staged approach:

• supports shared learning with PHNs and data partners
• informs future data standards and governance
• reduces risk by focusing early investment on areas of highest value. 

Further information on the NPHCDC, governance framework, data standards and demonstration projects is available on the AIHW website.

National Primary and Acute Care Data Linkage Project

This project is a partnership by all Australian, state and territory government health departments; the AIHW; Primary Health Networks; general practice; and Aboriginal Community Controlled Health Organisations. It developed a proposal to link de-identified data from general practices with other health data, to improve understanding of patients’ journeys across the health system. It is subject to funding; cost-sharing arrangements are being discussed with states and territories. 

My Health Record

My Health Record (MHR) has the potential to provide longitudinal sexual and reproductive health information from multiple care settings. 

MHR contains a range of clinical documents, including:

• shared health summaries
• pathology and diagnostic imaging reports
• prescription and dispensing information
• hospital discharge summaries
• specialist correspondence.

Internal scoping has identified potential use cases focused on understanding patterns of presentation, diagnosis and management for selected sexual and reproductive health conditions and symptoms across care settings and over time. Currently, MHR data are not available for research or public health purposes. Under the My Health Records Act 2012, secondary use for research and public health requires specific governance arrangements to be established, including an independent data governance board, with the AIHW as the legislated data custodian.

Australian Burden of Disease Study

The Australian Burden of Disease Study (ABDS) produces estimates of the health impact of more than 200 diseases and injuries on the Australian population, including the proportion attributable to selected modifiable risk factors. A separate study produces burden of disease estimates for First Nations populations. The ABDS draws on data from multiple data sources to estimate incidence, prevalence, severity and mortality for included conditions. 

The latest study (Australian Burden of Disease Study 2024) includes several sexual and reproductive health conditions, such as STIs, endometriosis, infertility and early pregnancy loss. The 2026 study, planned for release in December 2026, is expected to expand coverage to include menstrual cycle disorders and termination of pregnancy.

The ABDS will be a key data source for outcome measures within the sexual and reproductive health work program going forward.

Australia’s Disease Expenditure Database

Australia’s Disease Expenditure Database provides estimates of health system spending by condition, age group and sex. It includes expenditure on hospital services, primary health care and referred medical services. The database uses the ABDS condition groups and provides estimates for ‘well care’, including family planning. 

The database captures spending from all funding sources across the health system, including state and territory governments, private health insurance and out of pocket payments by individuals. Estimates are derived from multiple data sources, including the National Hospital Morbidity Database and the Health Expenditure Database. 

These data could be used to:

• examine spending on sexual and reproductive health conditions and ‘well care’ across a person’s life and over time
• assess how costs are distributed between government, private health insurers, and individuals, including where care disproportionately relies on private insurance or out-of-pocket payments.

Standardise existing data and establish data standards

A data standard is an agreed way to collect and record information so that it means the same thing wherever used. It sets out how data items are defined, coded and reported. For example, it can define how a condition is recorded or how a service is counted. 

Establishing national data standards for sexual and reproductive health would support the use of consistent terminology, definitions and coding across primary, tertiary, public and private health settings. This would enable more accurate, comparable and complete data to be collected. Standardised data elements and classifications systems (such as the International Classification of Diseases and Related Health Problems, 10^th Revision – ICD-10 and ICD-10-AM):

• reduce variability
• improve data quality
• support linkage across data sets
• enable consistent monitoring of trends, equity and outcomes.

This consistency strengthens the evidence for policy, service planning and research, and supports targeted interventions to improve health outcomes.

Australian Clinical Data for Interoperability

The Commonwealth Scientific and Industrial Research Organisation (CSIRO) is developing the Australian Clinical Data for Interoperability (AUCDI). This task focuses on developing data groups and data elements that reflect clinical care (patient care) requirements for data entry, use and sharing, including for sexual and reproductive health. AUCDI aims to make the collection, sharing and reuse of clinical information more consistent across tiers and sectors of Australia’s health system.