Establish new data collections

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Introduction National Sexual and Reproductive Health Survey National Pregnancy Loss Register Sexual and Reproductive Health Pharmacy Data Collection Health Care Provider Workforce Survey Benefits and limitations of proposed new data collections 

A new data collection may need to be established where no suitable data exist, where there are a substantial number of identified information gaps or where it is not feasible to adapt existing sources to address priority data gaps without substantial changes.

Four new data collections are proposed: 

New collections can capture information that is not available in administrative or service level data, such as experiences of care, unmet need and outcomes across the broader population. 

This approach supports more comprehensive and nationally consistent reporting over time, particularly for areas where current data are limited or do not exist. However, establishing new data collections requires considerable time and resourcing as well as governance arrangements, including those to do with privacy, consent and data quality.

National Sexual and Reproductive Health Survey

A National Sexual and Reproductive Health Survey, conducted every 3 years, has been identified as a key data development activity.

A national survey enables comprehensive, consistent and comparable data collection across multiple sexual and reproductive health topics, in a single data collection. This makes it a cost-effective approach to address a large number sexual and reproductive health data gaps. In contrast, smaller, targeted studies do not necessarily support population-level or time-series insights for ongoing monitoring, though may be cheaper to conduct.

A national survey could support monitoring over time of a large breadth of sexual and reproductive health priority topics and data gaps for men, women, trans and gender diverse people in Australia, to inform and evaluate policy.

Types of information to be collected include (but are not limited to):

  • prevalence and severity of symptoms, conditions and events (including pregnancy loss)
  • comorbidities with sexual and reproductive health conditions, including other chronic conditions/disease
  • preferences and use of sexual and reproductive health-related products, services or treatments 
  • affordability, availability and quality of care 
  • unmet need in relation to sexual and reproductive health products, services or treatments 
  • sexual and reproductive health literacy 
  • health-seeking behaviours
  • impacts on economic productivity, quality of life and a person’s physical and mental health 
  • fertility intentions, outcomes and impacts on family planning, including involuntary childlessness 
  • stigma in sexual and reproductive health care.

It would be developed in consultation with experts and stakeholders, including government and non-government organisations, academic and research experts, consumer and lived experience groups, community organisations and priority populations.

A self-report survey would enable data to be collected from people who do not seek health care. This would be particularly valuable for people who have experienced pregnancy loss or symptoms related to menstrual disorders, perimenopause and menopause, but who have not had contact with a health care service. 

The survey would be designed to be representative of the Australian population and different geographic areas. It would aim to improve representation of key priority populations such as multicultural communities and First Nations peoples. Some priority populations, however, are unlikely to be well-represented or face barriers to accessing this type of survey (such as people experiencing homelessness). 

The survey could be designed to monitor sexual and reproductive health issues relevant to policy, including:

The survey cannot replace hospital data, primary care data, pharmaceutical data or other administrative and clinical data. New collections would be developed in a staged way and used alongside existing data sources, where feasible, to address priority data gaps.

National Pregnancy Loss Register

There is no routine national collection and monitoring of pregnancy loss information in Australia. Existing data sources provide only a partial view of pregnancy loss and associated care, as described in Pregnancy loss in Australia: a data scoping study.

A National Pregnancy Loss Register would draw on and link existing administrative and/or clinical data sets containing data items relevant to pregnancy loss. 

Data sets under governance development (such as My Health Record) and undergoing pilot processes (such as the National Primary Health Care Data Collection) are also in scope for future linkage. The register would be similar in concept to the AIHW COVID-19 Register, with the important addition of a self-report arm.

A national register would provide greater visibility of care occurring for pregnancy loss before 20 weeks’ gestation beyond hospital data, to include primary care and community service organisations. 

This would support improved insights into: 

  • pregnancy loss prevalence, types and gestation
  • clinical information, including associations with other (reproductive) health experiences and outcomes 
  • contact with the health system and care pathways, including counselling and supportive care
  • quality of care and waiting times
  • disaggregation by patient, provider and service characteristics and geography, as well as future data linkage opportunities.

A register that links across multiple data collections is particularly relevant given the broad range of conditions associated with pregnancy loss, and the important role of primary and community care pathways for pregnancy loss. A linked register is an efficient way to obtain improved insights into pregnancy loss before 20 weeks’ gestation, as it avoids placing extra burden on health care providers and services by automating data collection. Further, it reuses data that already exist.

Data on experiences of care and support for pregnancy loss currently rely on separated research and community organisation surveys. The self-report arm of the register would collect new data, allowing data on experience and outcomes to be collected from people who:

  • engage only with primary care (with linkage to their corresponding administrative and/or clinical data with consent)
  • have no contact with the health system in relation to their pregnancy loss.

Sexual and Reproductive Health Pharmacy Data Collection

A national aggregate collection of pharmacy data would improve monitoring of access to sexual and reproductive health medications. As well as data on PBS-subsidised prescriptions and sales, the collection would include data on private or non-subsidised and off-label prescriptions and sales that were not recorded in national administrative data sets. This extra data would support monitoring of the use, affordability and geographic accessibility of sexual and reproductive health related medications and commodities over time. These data would provide important evidence to inform and evaluate policy. 

The AIHW is exploring a pilot project to assess data quality, feasibility, supply mechanisms, governance and ethics of such a collection. Development of the National Medicines Record will be monitored to prevent duplication.

Health Care Provider Workforce Survey

A Health Care Provider Workforce Survey would help to monitor the provision of sexual and reproductive health care, including:

  • self-reported sexual and reproductive health literacy
  • training in, and provision of, culturally safe and trauma-informed care
  • confidence in diagnosis, treatment, prescribing, procedures, screening and other care practices, where relevant
  • barriers to providing sexual and reproductive health care
  • workplace culture and supports for the provision of sexual and reproductive health care.

It could include an audit of skills and training and assess whether health care providers are working to their full scope of practice, including their ability to perform the activities and responsibilities for which they are educated and trained, and legally authorised, to undertake. Such a survey could provide insight into whether practice aligns with clinical guidelines, and/or how conscientious objection affects practice (or the role of conscientious objection).

Benefits and limitations of proposed new data collections

Table 16 summarises the rationale for each of the 4 proposed new data collections and outlines their potential strengths and benefits. It also documents limitations, including development timeframes, resource requirements, data quality and comparability issues, reporting burden on services, and governance and privacy considerations.

Table 16: Benefits and limitations of proposed new data collections

New data source

Benefits and strengths

Limitations and contingencies

National Sexual and Reproductive Health Survey (repeated at regular intervals, for example, every 3 years)

Nationally representative; includes priority populations not captured in other collections (including trans and gender diverse people, people who do not access health services, migrants and people without access to Medicare).

Supports monitoring over time for many sexual and reproductive health topics (not only the 5 initial priority topics) and enables tracking of trends and changes over time.

Provides information on sexual and reproductive health topics either not captured, or poorly captured, in existing administrative and clinical data sets.

Enables consistent, comparable national reporting across multiple priority topics using a single data collection.

Provides data on experiences, behaviours, needs and outcomes that cannot be measured through existing health system data.

Responds directly to strong and consistent stakeholder feedback on the need for a national sexual and reproductive health survey.

Has cost and resourcing requirements.

Some priority populations would still not be captured through a survey and ensuring representative samples of small groups may not be possible.

May have limited statistical power for rare outcomes or small population groups, even with oversampling. Some disaggregation may not be possible due to data quality or to maintain confidentiality.

Relies on self-reported data, which are subject to reporting biases and interpretation of questions.

Requires careful management of participant burden and sensitivity.​​

National Pregnancy Loss Register / linked data asset

Nationally representative when fully established, drawing on national data sets such as hospitals collections.

Reduces clinician burden, with no requirement for additional manual data entry.

Lower cost, by using existing data.

Can be accessed for government policy development and reporting as well as for research purposes.

Has a self-report option that allows:

  • capture of data from people who engage only with primary care or do not engage with the health system for their pregnancy loss
  • collection of data items not available in existing administrative or clinical data sets.

Can be linked to administrative data sets to obtain insights on patient care pathways and care experiences over time.

The register relies on existing data items, which may have their own limitations.

There may be potential variability in data accuracy due to differences in coding practices across administrative data sets.

The timeliness of reporting may be affected by delays in the availability of some administrative data sources.

The self-report option coverage may be limited, as it relies on awareness of, and voluntary completion by, individuals (and would require promotion).

It is subject to governance arrangements and funding.

Sexual and Reproductive Health Pharmacy Data Collection

Includes data on all prescriptions dispensed by panel pharmacies and is not limited to PBS-subsidised prescriptions.

Can allow data to be disaggregated by PBS status, enabling the visibility of off-label and private prescribing.

Enables quantification of over-the-counter product sales, such as emergency contraception.

Provides proxy data to support the estimation of out-of-pocket costs across prescription and over-the-counter products.

Pharmacy panel data do not include all retail pharmacies in Australia.

The collection does not capture products supplied directly to clinicians or clinics.

The collection has reporting limitations where dispensing quantities are low.

The collection is subject to governance arrangements and funding.​​​

​Health Care Provider Workforce Survey

Would fill a major evidence gap in sexual and reproductive health care relating to workforce capability and capacity, which was raised consistently by stakeholders across most priority topics.

Could capture self-reported confidence, knowledge and experience in diagnosing and managing sexual and reproductive health conditions and identify awareness of, or lack of, validated tools, clinical guidelines and care pathways.

Supports workforce planning and service capacity by enabling assessment of whether health care providers are working to their full scope of practice. It could also identify gaps in skills and training and support targeted investment in education, training and professional development programs.

Would improve understanding of quality and consistency of care and may contribute to identifying unwanted variations in care.

Would allow assessment of workforce capability to provide culturally safe and inclusive sexual and reproductive health care.

Relies on self‑reported data, which would be subject to recall and social desirability bias.

May have a low completion rate, or response rates may vary by profession, setting or region.

Adds to the clinical/health care provider reporting burden, which the AIHW is trying to minimise.

Requires sensitivity in questions relating to confidence, skills and conscientious objection.

Subject to governance arrangements and funding.

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