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How well is the National Cervical Screening Program performing for Indigenous Australian women? Why we don’t really know, and what we can and should do about it L.J. WHOP, BMEDSC, MAPPEPID, PHD CANDIDATE, Menzies School of Health Research, Charles Darwin University, Brisbane, Qld, J. CUNNINGHAM, SCD, SENIOR PRINCIPAL RESEARCH FELLOW, Menzies School of Health Research, Charles Darwin University, Casuarina, NT, & J.R. CONDON, PHD, FAFPHM, PRINCIPAL RESEARCH FELLOW, Menzies School of Health Research, Charles Darwin University, Casuarina, NT, Australia

WHOP L.J., CUNNINGHAM J. & CONDON J.R. (2014) European Journal of Cancer Care 23, 716–720 How well is the National Cervical Screening Program performing for Indigenous Australian women? Why we don’t really know, and what we can and should do about it Since its inception in 1991, Australia’s organised approach to cervical screening, the National Cervical Screening Program (NCSP), has seen a 50% reduction in both incidence and mortality from cervical cancer in Australia. However, Indigenous Australian women continue to experience a disproportionately higher burden of cervical cancer. No national data on screening participation of Indigenous women currently exist, in large part because pathology forms, the primary source of data for Pap Test Registers (PTR), do not record Indigenous status. While including Indigenous status on pathology forms is the obvious solution for producing essential information about cervical screening of Indigenous women, this will require an appropriate consultative process and it will be many years before reliable data are available. One interim option being explored is the feasibility of linking the PTR to another data source which includes Indigenous status, such as hospital data. However, despite its promise, there remain major impediments to obtaining useful linked data in Australia, and it continues to be unclear whether such an approach is viable for routine reporting. If we are to understand and improve cervical screening participation and outcomes for Indigenous women in the foreseeable future, Australia needs to act now to include Indigenous status in pathology forms and (subsequently) PTRs.

Keywords: cervical cancer, Indigenous Australians, Indigenous identification, cervical screening, cervical screening program.

Aboriginal and Torres Strait Islanders, Australia’s Indigenous peoples, experience lower life expectancy and worse health status than other Australians (Australian Bureau of Statistics and Australian Institute of Health and Welfare 2008). The reasons for these health inequalities are

Correspondence address: Lisa J. Whop, Menzies School of Health Research, Charles Darwin University, PO Box 10639, Brisbane, Qld 4000, Australia (e-mail: [email protected]).

Accepted 13 August 2014 DOI: 10.1111/ecc.12244 European Journal of Cancer Care, 2014, 23, 716–720

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complex and multi-faceted but represent, at least in part, the ongoing legacy of colonisation, including such factors as social disadvantage, disposession of land and loss of language (King et al. 2009). The Indigenous population, which represents about 2.5% of the Australian population, is much younger than the total Australian population (median age 21 versus 37 years, respectively). Indigenous people are more likely than other Australians to live in remote or very remote areas (25% versus 2%, respectively), and less likely to be employed, have post-school qualifications or own their own home (Australian Bureau of Statistics and Australian Institute of Health and Welfare 2008).

Indigenous Australian women and cervical screening

The availability of statistical data about the Indigenous population has historically been limited because Indigenous people were not always identified as such in various administrative data sets, including even the most basic demographic and health-related data sets such as birth and death notifications and hospital separations (Australian Bureau of Statistics and Australian Institute of Health and Welfare 2008; Australian Institute of Health and Welfare 2013d). Some data collections did not include an Indigenous identifier; others included a question on Indigenous status but the question was not asked consistently (Australian Institute of Health and Welfare 2013d). In some cases, Indigenous people chose not to identify as such for fear of negative treatment (Scotney et al. 2010; Australian Bureau of Statistics 2012). The resulting underidentification of Indigenous people varied from collection to collection as well as over time, but the extent of such under-identification has not always been well characterised (Australian Institute of Health and Welfare 2010, 2013d). There have been considerable improvements in the quality and availability of data over the past decade, but challenges remain (Australian Institute of Health and Welfare 2010, 2013d). Importantly, datasets which are informed by pathology notifications remain largely incomplete with respect to Indigenous status because pathology request forms do not include an Indigenous identifier. This has a direct impact on cancer registries and cervical screening programs (as well as communicable diseases notification programs) across Australia (Australian Institute of Health and Welfare 2013b). Cancer is the second leading cause of death for Indigenous Australians (Australian Institute of Health and Welfare & Cancer Australia 2013). Indigenous Australians are more likely to be diagnosed with high fatality cancers (e.g. lung, liver) (Australian Institute of Health and Welfare & Cancer Australia 2013), to have advanced disease when diagnosed (South Australian Cancer Registry 1997; Condon et al. 2005; Valery et al. 2006), and to have higher mortality and lower survival compared with other Australians (Australian Institute of Health and Welfare & Cancer Australia 2013). Based on available data, they are also less likely to participate in screening programs (Cunningham et al. 2008; Miller et al. 2012). Despite these disparities, cancer has not been widely perceived as a significant health issue for Indigenous Australians until very recently. This is partly because of the high profile of a myriad of other health problems that also occur at greater rates in the Indigenous population than in the non-Indigenous population, such as diabetes, heart disease, kidney disease, infectious diseases, injuries and infant mortality. It is also because, in contrast to cancer, © 2014 John Wiley & Sons Ltd

information about these other conditions has been available for a considerable time and in considerable detail. Such information includes routine public health reports (such as infant mortality and notifiable disease statistics produced by national and state/territory governments), research findings (both quantitative and qualitative), and more recently service utilisation and effectiveness information from health service organisations. For several decades, Australia has had a national cancer registry system which reports detailed information about cancer incidence, mortality and survival. More recently clinical cancer registries and nationally coordinated screening programs have provided reliable information about cancer prevention, diagnosis, treatment and outcomes. Until recently, however, these sources have provided little or no information about cancer control for Indigenous Australians, and some sources are still unable to provide such information. As outlined above, the primary reason for this omission is absent or incomplete identification of Indigenous Australians. While Indigenous Australians with cancer are included in cancer registers and related data collections, data on the Indigenous status of people with cancer is either not recorded or is seriously incomplete, so that reliable statistical information about Indigenous people with cancer could not be produced at the national level. For example, it was only in 2011 that reliable seminational Indigenous cancer incidence statistics, covering 84% of the Indigenous population, became available (Zhang et al. 2011). Cervical cancer provides a good example of the challenges posed by inadequate information. In 1998–2005, the age-standardised cervical cancer incidence rate for Indigenous women was 2.7 times higher (95% CI 2.2–3.2) than that for non-Indigenous women (20 vs. 7 per 100 000) (Zhang et al. 2011). In 2007–2011, based on semi-national mortality data for 90% of the Indigenous population, the age-standardised mortality rate for cervical cancer was more than 4 times higher for Indigenous than nonIndigenous women (9.0 vs. 1.9 per 100 000 women) (Australian Institute of Health and Welfare 2014). These disparities highlight the critical importance of cervical screening for Indigenous women. Regional studies have reported generally lower participation in cervical screening for Indigenous women than for other women, but there has been marked variation from place to place (Coory et al. 2002; Binns & Condon 2006). No national data on screening participation regarding Indigenous women currently exist. Australian women have one of the lowest cervical cancer rates in the world (Ferlay et al. 2010; Arbyn et al. 717

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2011), and this is largely attributed to Australia’s organised approach to cervical screening through the National Cervical Screening Program (NCSP). The NCSP is responsible for implementing and maintaining Pap Test Registers (PTR) in each state/territory. These registers record the screening histories of women and provide a recall and reminder function for them and their health care providers (Australian Government Department of Health 2013). Since the NCSP’s inception in 1991, there has been a 50% reduction in both incidence and mortality from cervical cancer in Australia (Australian Institute of Health and Welfare 2013a). Unfortunately these benefits have not been experienced by all Australian women. As noted above, Indigenous Australian women experience a disproportionately higher burden of cervical cancer, which is a readily preventable and highly treatable cancer (Australian Institute of Health and Welfare 2013a). Despite the importance of screening in reducing the burden of cervical cancer, we do not currently have adequate information to assess such vital performance measures as the level of participation of Indigenous women in the NCSP or the adequacy of treatment of Indigenous women with abnormal Pap tests. We can say very little about how things are at any one point; we can say even less about changes over time. Without such information, it is difficult to initiate improvements and to monitor progress in screening participation and outcomes for Indigenous women, and, consequently, it is difficult to make any real change to the burden of disease experienced by Indigenous women. The main reason for the lack of information about Indigenous women is that, as noted above, most pathology forms, which are the primary source of data for PTRs, do not record Indigenous status (Australian Institute of Health and Welfare 2013a). A recent business case developed by the Australian Institute of Health and Welfare following extensive consultation stated that ‘to improve Indigenous identification in the national health registries for cancer, communicable disease and cervical screening, the inclusion of Indigenous status on pathology request forms is key’ (Australian Institute of Health and Welfare 2013b). However, adding Indigenous status to pathology report forms is not as straightforward as it might sound. A range of issues need to be taken into account, including (but not limited to) the need for legislative amendments and system changes, ensuring health practitioner compliance, and identifying funding to support implementation (Acumen Alliance 2007). Perceived barriers in identifying as Indigenous which may exist for Indigenous Australians include (but again are not limited to): mistrust and suspicion surrounding data collection (justifiable given Austral718

ia’s historical context); past negative experience, which may arise from previous experience of and exposure to racism; clinical and cultural stereotyping and fear of being treated differently (Acumen Alliance 2007; Kelaher et al. 2010; Scotney et al. 2010; Australian Bureau of Statistics 2012). A critical factor is the acceptance and support of the Indigenous community, which will require ongoing consultation and community engagement (Miller et al. 2012). Thus, while including Indigenous status on pathology forms is the obvious medium- to long-term solution for producing essential information about cervical screening of Indigenous women (as well as for cancer registrations and communicable disease notifications for Indigenous people), it will be many years before reliable data are available. So, what can be done in the meantime? One attractive option is to link PTR data to another data source with high-quality data on Indigenous status. One such source is hospital inpatient data, for which Indigenous status was estimated to be correct for 88% of Indigenous patients in 2011–2012 (Australian Institute of Health and Welfare 2013c). An example of such a data linkage study is the National Indigenous Cervical Screening Project (NICSP), which is currently being conducted by ourselves and others at the Menzies School of Health Research with funding from Australia’s National Health and Medical Research Council. Within each state/ territory, PTR data is being linked to hospital data to obtain Indigenous status and co-morbidity data, as well as to cervical cancer registration data from Cancer Registries to identify women diagnosed with cancer. A similar study, currently underway in the state of Victoria, involves linking PTR data and hospital data for both Culturally and Linguistically Diverse and Indigenous women (Victorian Cytology Service 2011). Early results from the NICSP for the state of Queensland indicate that this method of linkage can overcome the lack of Indigenous status on the PTR. The millions of women who will be included in the NICSP far exceed the sample size that could be achieved in a research project that involved individual contact with, consent from, and tracing of, participating women, at a fraction of the cost. Even with its enormous promise, there are major impediments to obtaining linked data in Australia at present. For example, in the NICSP, it took 18 months to acquire the approvals necessary to link the three data sources for Queensland and an additional 5 months for the data to be linked by the relevant data linkage agency; the process is still underway in other jurisdictions. The lengthy delays have resulted from a range of factors including: perceived risks, particularly around privacy concerns; duplication of processes, especially in projects that involve more than one © 2014 John Wiley & Sons Ltd

Indigenous Australian women and cervical screening

state/territory, such as the need for multiple ethics approvals; competing priorities of government agencies, and the resulting staffing levels of data linkage units; negotiation of linkage costs, which vary markedly by jurisdiction; and variations in the process for obtaining approval from multiple data custodians. In addition, while it would be extremely valuable to use data linkage to record Indigenous status on the PTR permanently, this is not possible through the NICSP because the records in the linked research dataset have been de-identified. Thus, while the NICSP is valuable as a one-off research project, it is not yet clear that data linkage is a viable approach for routine reporting in the short- to medium-term. Despite the lack of information on the performance of the NCSP for Indigenous women, there is some preliminary evidence of improvement in outcomes over time. Between 1998 and 2005, there was an estimated decrease of 3% per year in the cervical cancer incidence rate for Indigenous women, based on data covering 84% of the Indigenous population (Zhang et al. 2011). Although this estimate did not reach statistical significance, it does suggest the possibility that efforts to prevent cervical cancer may be having a positive effect for Indigenous women, even if we are unable to measure their impact directly. While such data provide grounds for optimism, they also help to highlight the limitations in what we can know without adequate data. Although we are now in a position to track trends in cervical cancer incidence over time for the majority of Indigenous women, we are not yet able to ascertain whether any changes in incidence relate to participation in the NCSP and/or to the adequacy of follow-up of abnormal Pap test results. We therefore lack the necessary evidence base to make the NCSP more effective for Indigenous women and provide them with the same level of benefits that have been experienced by other Australian women. Ultimately, the availability of consistent and reliable data on the health and wellbeing of Indigenous Australians depends on embedding the collection of Indigenous

REFERENCES Acumen Alliance (2007) Aboriginal & Torres strait islander identifier on pathology forms: feasibility study into increasing the completeness of the Aboriginal and Torres Strait Islander identifier in ACT government registries. Canberra, ACT: ACT Health. Arbyn M., Castellsague X., De Sanjose S., Bruni L., Saraiya M., Bray F. & Ferlay J.

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status into routine practice, with the full support of key stakeholders. This has already occurred for birth and death registrations, and for hospital inpatient data, although there are certainly gains to be made in terms of data quality and completeness in some jurisdictions. Finally, if we are to monitor cervical cancer screening (and other key collections such as cancer registrations) and improve health system performance and outcomes for Indigenous people, it is imperative that Indigenous status be included in pathology forms as soon as a sound and inclusive process will allow. The Australian Institute of Health and Welfare’s business case (Australian Institute of Health and Welfare 2013b) is an important first step, one that we hope will provide a springboard for the action that is urgently needed.

ACKNOWLEDGEMENTS LJ Whop is supported by a Sidney Myer Health Scholarship and a Menzies Enhanced Living Top-up scholarship funded by the Lowitja Institute. J Cunningham was supported by a National Health & Medical Research Council (NHMRC) Research Fellowship (#1058244). The National Indigenous Cervical Screening Project is funded by an NHMRC Project Grant (#104559). This study was undertaken under the auspices of the Centre of Research Excellence in Discovering Indigenous Strategies to improve Cancer Outcomes Via Engagement, Research Translation and Training (DISCOVER-TT CRE, funded by the NHMRC #1041111), and the Strategic Research Partnership to improve Cancer control for Indigenous Australians (STREP Ca-CIndA, funded through Cancer Council NSW (SRP 13-01) with supplementary funding from Cancer Council WA). We also acknowledge the ongoing support of the Lowitja Institute, Australia’s National Institute for Aboriginal and Torres Strait Islander Health Research. The views expressed in this publication are those of the authors and do not necessarily reflect the views of the funding agencies.

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How well is the National Cervical Screening Program performing for Indigenous Australian women? Why we don't really know, and what we can and should do about it.

Since its inception in 1991, Australia's organised approach to cervical screening, the National Cervical Screening Program (NCSP), has seen a 50% redu...
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