Discussion

This study presents comments and concerns about the 2017 changes to the Australian NCSP expressed by one of Australia’s largest petitions on ‘Change.org’. Many comments about women’s health, politics and cost displayed significant misconceptions and misinformation about the rationale for the screening changes. Underpinning most comments in these themes was the idea that under the renewed screening programme, an increased number of cervical cancers would be missed or diagnosed at an advanced stage, and that the rationale for changes was based on reducing government healthcare costs. Many commenters voiced concerns about the increased screening interval (from 2 to 5 years) and the later age of onset of screening (from 18 or 20 to 25 years of age). We noted a lack of opposition to a change from Pap smears to HPV testing itself. This may be reflective of the information and education material provided to the community in promoting the change, which focused on explaining HPV, or reflective of the lack of understanding regarding the differences between cytology and HPV testing that lead to the changes in screening interval and age.29 Another contributing factor to the significant opposition may have been news media coverage which highlighted safety concerns expressed by opposing government ministers and community members about increased screening intervals and later age of screening onset.19 30 31

Previous studies conducted in Australia prior to the announcement of the changes have identified women’s concerns about age of first invitation to screen, screening intervals and cost-cutting, so these issues could have been addressed in advance through better communication.32–34 A potential for cancer to be missed and a suspicion that an increased screening interval was related to cost were major concerns for women described in these publications, and are concerns shared by many commenters in our study. Internationally, publications similarly report that while HPV testing is generally accepted by women, longer screening intervals face opposition.35 It is therefore essential to educate women about the rationale for the change to screening intervals and age of first invitation to screen, namely the increased sensitivity of the HPV test and the harms of overdiagnosis and overtreatment.

Increasingly, these concerns are relayed over social media, as shown by a similar ‘Change.org’ petition in the UK attracting over 300 000 signatures in January 2017.36 While the petition was focused on early screening options for symptomatic or high-risk groups, many comments expressed that cervical screening should be available from age 18 for all women. Concerns about increased screening intervals have also been raised by consumers in relation to other cancer types. In the USA, recommendations for later starting age of breast cancer screening and prolonged screening intervals attracted public accusations that the new proposals were politically motivated and ‘anti-woman’.37 38

Opposition to the screening changes may reflect status quo bias, and general opposition of people to change.39 A significant challenge is how to present a new screening programme with major changes so that confidence in the current programme is not undermined. Patients and the public often hold the view that ‘more is better’ in medical care.40 This is because many patients have been socialised to fear rare, life-threatening events,41 and hold fatalistic views of cancer.42 Patients also have a widespread enthusiasm for cancer screening, reflecting a lay logic that prevention and early diagnosis is universally beneficial, which is not always the case.43 The relationship between sensitivity and specificity of screening tests is a difficult concept to communicate, and public health practitioners in the past have mainly focused on sensitivity in promoting screening to the public.44 We believe much greater efforts are required by public health practitioners to better educate the public about the relative benefits and harms of screening.

There are discrepancies between benefits to the public and benefits to the individual from cancer screening. Personal experience of illness tends to be far more salient for patients than general notions of healthcare spending for society as a whole.45 Public information from government websites regarding the changes have also mentioned the harmful effects of the current Pap smear screening programme, for example, treatments for abnormal cells which can lead to increases in premature birth.29 While this approach is more effective than discussing collective waste in communicating low-value care to patients, most healthy patients still have difficulty envisioning how screening could be harmful to them.46 Our recommendations for issues to address with patients concerned about the changes are outlined in table 2.

Despite the initial announcement of the changes by the Australian government in April 2014, the changes did not garner significant publicity until 2017. The rollout of the renewed NCSP was planned for May 2017, but was delayed until December, as a component of the renewed programme, the National Cancer Screening Register, was not ready for implementation. An implementation phase was to be undertaken which included engaging with the public to assess acceptability and educating clinicians and women about the changes.47 A summary of the Medical Services Advisory Committee application for NCSP changes described limited community consultation through 2012–2013.48 Feedback was sought from, ‘clinical service providers, pathology service providers, consumers, professional bodies for health professionals and pathologists, and industry’, but results of these consultations are not described. While limited education has been provided to GPs through research initiatives such as the Compass trial in Victoria,49 and online education modules for clinicians were released in late 2017,50 a 2015 article in the Australian Doctor magazine reported that ‘very little information has been distributed to GPs [about the changes]’.51 Ideally, clinicians would be an important group to engage and educate the public about cervical screening. The Australian Government website outlining the cervical screening changes encourages women to speak with health professionals about any concerns.29 A 2016 systematic review of 35 publications demonstrated that healthcare provider recommendation was positively correlated with improved screening rates.52

To the best of our knowledge, this is the first study to analyse reasons in the wider population for opposition to the 2017 Australian cervical screening changes since their announcement and public discussion. The study is based on 2000 randomly selected original comments from a sample of almost 20 000, and comments were on average 22 words long, providing sufficient detail to identify reasons for opposition. The importance and reach of the petition can be estimated by subsequent responses to it from the President of the Australian Medical Association, the Australian Government Minister for Health and Australia’s Chief Medical Officer.18

It could be argued that these commenters are not representative of the majority of Australian women, but simply a vocal minority. However, this petition was one of the biggest petitions on ‘Change.org’ in 2016 and 2017, indicating high public interest. Evidence supports the notion that public information exposure through social media has tangible impacts on health practices.53 Although the comments may not be representative of the majority of Australian women, we cannot disregard the impact that public opposition such as this can have on changes to public policy, for example, where the recommendations for changing the US breast screening programme received such a backlash that the US Preventive Services Task Force was forced to reword the recommendations.37 38 The strong views of a minority of vocal community members can be very powerful in the area of cancer screening.

Nevertheless, a limitation of this study is the absence of demographic information about petitioners, including age, gender and ethnicity. It is therefore unknown whether this sample represents women or men with lower, average or higher health literacy or educational status. If this is the case, more appropriate information targeting this demographic is required. However, it is more likely that the petition attracted responses from persons with a greater interest in health policy or women’s health and may also represent a group with increased personal or family history of cervical cancer.37 It should also be noted that three commenters (<1%) self-identified as healthcare providers opposed to the changes, which may indicate that concern is spread across socioeconomic and educational status, and that there is a need to address both professional and public concerns.

This study has practical and international implications for informing the significant challenge of rolling out future screening programme changes; in particular, changing from cytology to HPV-based cervical screening. It highlights the importance of effective communication to the public, of changes which involve longer screening intervals, later age of first invitation to screen and change in screening technology. Developing an understanding of the public’s awareness of the benefits and harms of screening is crucial in the development of information about these changes. Communication must acknowledge emotions involved in this screening change, should anticipate the public’s known concerns, and must engage them in the decision-making process of screening changes. Future research will explore the optimum time to involve the public in screening policy. If the public is ‘misinformed and misguided’, as suggested by the President of the Australian Medical Association in opposing the renewed cervical screening programme, then this could be seen as a reflection of a failure to effectively communicate the changes and their rationale.18 GPs, gynaecologists and other healthcare professionals who will discuss cervical screening with patients should be aware of public concern, and be prepared to discuss the reasons for the change in technology from cytology to HPV testing which result in the longer screening interval and older starting age to screening.