Cervical screening outcomes for Aboriginal and Torres Strait Islander participants
It is known that Aboriginal and Torres Strait Islander women experience lower levels of participation in cervical screening and a disproportionately higher burden from cervical cancer than non-Indigenous women.
In Queensland, a data linkage study under the previous NCSP estimated the 2-year participation rate for 2010–2011 to be 33.5% for Aboriginal and Torres Strait Islander women compared to 55.7% for non-Indigenous women (Whop et al. 2016).
The most recent cervical screening data from the National Key Performance Indicators (nKPIs) Data Collection show that, as at June 2024, 47% of Aboriginal and Torres Strait Islander regular female clients of Indigenous-specific primary health-care services aged 25–74 who had not had a hysterectomy had a cervical screening test recorded at that service within the previous 5 years (AIHW 2025b).
These data and other research studies suggest that Aboriginal and Torres Strait Islander women face ongoing barriers to participating in cervical screening. These barriers include cultural barriers, historical and systemic barriers, as well as barriers associated with remoteness and socioeconomic disadvantage.
While available data provide useful insights, we have not been able to report on cervical screening participation by Indigenous status at the national level because of incomplete data. The source of cervical screening data used to be primarily pathology forms, and not all pathology forms in all states and territories include/d Indigenous status either historically or currently (see Box Indigenous people 1 for further information on Indigenous identification on pathology forms).
This has been considered a failing, as it has long been recognised that reporting cervical screening participation is essential to monitor the success of initiatives introduced to increase participation in cervical screening for Aboriginal and Torres Strait Islander women, and to monitor equity in the program delivery as a whole. It is similarly important to report key cervical screening outcomes for Aboriginal and Torres Strait Islander participants.
Progression towards this has for a very long time been a priority for the NCSP. Cervical screening program managers, the Department of Health, Disability and Ageing, and the AIHW have strived towards this with the support of Aboriginal and Torres Strait Islander peoples, NCSP representatives, researchers, clinicians, and cervical screening experts.
Box Indigenous people 1: COVID-19 and Indigenous identification on pathology forms
The poor Indigenous identification on pathology forms is a longstanding issue.
The COVID-19 pandemic in early 2020 highlighted this as a pertinent issue, as the poor level of Indigenous identification on pathology forms used for COVID-19 testing meant that it was not possible to accurately know how many Aboriginal and Torres Strait Islander peoples were tested for SARS-CoV-2 (the virus that causes COVID-19), and so the true infection rate for Aboriginal and Torres Strait Islander peoples could not be known.
In May 2020, the National Aboriginal Community Controlled Health Organisation (NACCHO) published a submission on the Australian Government’s response to the COVID-19 pandemic, which included a recommendation that the Government 'improve data collection practices in Aboriginal and Torres Strait Islander identification so the information can be used to provide accurate reporting on screening and testing programs, and outcomes of testing, including in pathology' (NACCHO 2020).
In line with this, there has been considerable work undertaken by the states and territories to improve Indigenous identification on pathology forms of both public and private pathology laboratories to address the need to be able to accurately identify Aboriginal and Torres Strait Islander peoples on pathology forms for COVID-19 testing.
While this work was performed in response to the COVID-19 pandemic, improved Indigenous identification on pathology forms will also benefit screening and testing programs that rely on pathology forms to enable accurate reporting of outcomes for Aboriginal and Torres Strait Islander peoples, for example cancer and diabetes.
Identification of Indigenous people in cervical screening data sets
In addition to Indigenous status from Medicare, the National Cancer Screening Register (NCSR) also receives Indigenous status from pathology and colposcopy forms, along with any Indigenous status data that existed in the previous sources of cervical screening data when these were originally migrated into the NCSR in 2017. Indigenous status can also be supplemented from forms used in the bowel cancer and lung cancer screening programs since participants from these programs are also included in the NCSR.
Indigenous status used in this report is based on the most recently reported Indigenous status from Medicare or migrated data, supplemented with historical data. For this derived Indigenous status, the history of an individual’s Indigenous status is used to supplement the most recently reported Indigenous status with a preference for retaining a status of Aboriginal and/or Torres Strait Islander over non-Indigenous/not stated if there are multiple sources, irrespective of the recency of the data.
Reporting key performance indicators for Aboriginal and Torres Strait Islander people
Of the 17 performance indicators reported, 6 are reported by Indigenous status (Table Indigenous people 1).
It is important to note that, while Indigenous status data are considered a sufficient level of completeness to allow some reporting of cervical screening data for Aboriginal and Torres Strait Islander participants, Indigenous status data in the NCSR are not complete. This means that the reported findings may not be representative of all Aboriginal and Torres Strait Islander participants.
Screening pathway | Performance indicator | Reported |
|---|---|---|
Recruitment | 1 Participation | No |
Recruitment | 2 Response to invitation | No |
Recruitment | 3 Rescreening | No |
Screening | 4 Screening results | No |
Screening | 5 Correlation of screening results | No |
Screening | 6 Screening HPV test positivity | Yes |
Screening | 7 Cervical cancer diagnosed after a low risk screening test result | No |
Screening | 8 LBC test in self-collection participants positive for oncogenic HPV (not 16/18) | No |
Screening | 9 Colposcopy in self-collection participants positive for oncogenic HPV 16/18 | No |
Screening | 10 Adherence to recommendation for follow-up | No |
Screening | 11 Follow-up results | No |
Assessment | 12 Colposcopy rate | Yes |
Assessment | 13 Time to colposcopy | Yes |
Assessment | 14 Biopsy rate | No |
Assessment | 15 Yield of high-grade abnormalities on biopsy among participants who attend colposcopy with higher risk screening results | No |
Assessment | 16 Positive predictive value of colposcopy | No |
Diagnosis | 17a High-grade cervical abnormality detection rate | Yes |
Diagnosis | 17b Cervical cancer detection rate | No |
Outcomes | 18 Cervical cancers diagnosed by time since last screen | No |
Outcomes | 19 Incidence of cervical cancer | Yes |
Outcomes | 20 Mortality from cervical cancer | Yes |
The performance indicators selected for inclusion in this report are key cervical screening performance indicators for the NCSP, and considered highly relevant to the experience of Aboriginal and Torres Strait Islander participants in cervical screening.
It is important that Aboriginal and Torres Strait Islander peoples continue to have agency over their data, which in the future may include additional performance indicators reported by Indigenous status, as well as Aboriginal and/or Torres Strait Islander data presented in a different way that best reflects their needs and aspirations.
Priority Reform 4 under the National Agreement on Closing the Gap aims to improve and share access to regional data and information to enable Aboriginal and Torres Strait Islander communities to make informed decisions (see Box Indigenous people 2).
Box Indigenous people 2: Priority Reform 4 under the National Agreement on Closing the Gap
The National Agreement on Closing the Gap was developed in partnership between the Coalition of Aboriginal and Torres Strait Islander Peak Organisations and Australian governments, with the objective to overcome the entrenched inequality faced by too many Aboriginal and Torres Strait Islander people so that their life outcomes are equal to all Australians.
Under this National Agreement, and following the guidance of Aboriginal and Torres Strait Islander people, four Priority Reforms have been designed to change the way that governments work with Aboriginal and Torres Strait Islander people.
The Priority Reforms will:
- Strengthen and establish formal partnerships and shared decision-making
- Build the Aboriginal and Torres Strait Islander community-controlled sector
- Transform government organisations so they work better for and with Aboriginal and Torres Strait Islander people
- Improve and share access to data and information to enable Aboriginal and Torres Strait Islander communities to make informed decisions.
Priority Reform 4 Improve and share access to data and information to enable Aboriginal and Torres Strait Islander communities make informed decisions
Data and information sharing elements of Priority Reform 4:
- There are partnerships in place between Aboriginal and Torres Strait Islander representatives and government organisations to guide the improved collections, access, management, and use of data to inform shared decision-making for the benefit of Aboriginal and Torres Strait Islander people.
- Governments agree to provide Aboriginal and Torres Strait Islander communities and organisations access to the same data and information on which any decisions are made, subject to meeting privacy requirements, and ensuring data security and integrity.
- Governments collect, handle and report data at sufficient levels of disaggregation, and in an accessible and timely way, to empower local Aboriginal and Torres Strait Islander communities to access, use and interpret data for local decision-making
- Aboriginal and Torres Strait Islander communities and organisations are supported by governments to build capability and expertise in collecting, using, and interpreting data in a meaningful way.
In addition, the Framework for Governance of Indigenous Data will be implemented across the Australia Public Service between 2025–2031. This framework was co-designed by Australian Public Service agencies and Aboriginal and Torres Strait Islander and non-government partners. This Framework places Aboriginal and Torres Strait Islander people at its core, and is a single framework for Australian Public Service Agencies working with Indigenous data.
Implementation of this Framework will be guided by the following four principles:
- Partner with Aboriginal and Torres Strait Islander people
- Build data-related capabilities
- Provide knowledge of data assets
- Build an inclusive data system.
AIHW (2025b) Aboriginal and Torres Strait Islander specific primary health care: results from the nKPI and OSR collections, catalogue number IHW 227, AIHW, Australian Government, accessed 11 June 2025.
NACCHO (National Aboriginal Community Controlled Health Organisation) (2020) The Australian Government’s response to the COVID-19 pandemic, COVID-19 Submission 64, NACCHO, Canberra.
Whop LJ, Garvey G, Baade P, Cunningham J, Lokuge K, Brotherton JM, Valery PC, O'Connell DL, Canfell K, Diaz A, Roder D, Gertig D, Moore SP, Condon JR (2016) The first comprehensive report on Indigenous Australian women’s inequalities in cervical screening: a retrospective registry cohort study in Queensland, Australia (2000–2011), Cancer 122(10): 1560–1569.