Australia’s new national cervical cancer screening program has had a bad week.
But it’s not all bad news. The delay gives the Standing Committee on Screening, which is responsible for implementing the new program, the chance to engage with the public and communicate why the changes are being made and what they mean.
If the online petition is anything to go by, this is badly needed to counter the widespread misunderstanding of the new cervical screening program and the role of human papillomavirus (HPV) in causing cervical cancer.
How did we get here?
Key changes included raising the screening age to 25 and replacing Pap tests every two years with HPV tests every five years. The HPV test is more accurate than the existing Pap test, which looks for abnormal cells on the cervix rather than HPV, and its accuracy means it is safer for women to go longer between tests.
Another important change is setting up a national cancer screening register to record people’s cervical cancer screening histories.
As a result, the new cervical screening test will not be made available on the Medicare Benefits Schedule from May 1; instead, the health department advised women continue to be screened using the existing Pap test.
Online petition shows women want to know more
The past week saw 70,000 people (so far) sign an online petition opposing the changes to the cervical screening program.
The letter accompanying the petition, since removed, unfortunately misrepresented the effectiveness of screening women under the age of 25, the role of HPV as the cause of cervical cancer and the rationale behind the new screening program.
The petition struck a chord and quickly gathered steam.
In an interview, the person behind the petition said she was motivated by “concern and worry”, because “[she] didn’t know about it and no one seemed to know about it”, and because “[she’d] love someone to be able to get down on our level and explain the testing”.
Responses to her petition indicated widespread concern about safety of the new starting age and the wider screening interval. In addition, women perceived the renewed program as a cutback – that less screening is being driven by cost-savings rather than the availability of a better test.
A response from Michael Gannon for the Australian Medical Association provided a large number of facts.
It also portrayed the petitioners as “well-intentioned […] but woefully misinformed and misguided”, but did not respond to the factors motivating the anger in many petition comments.
How to handle concerns?
Petitioners’ concerns should not be dismissed. If the public is “misinformed and misguided” about changes to cervical screening, it is the result of a failure to effectively communicate the changes and their rationale.
An implementation phase was to be undertaken that included engaging with the public to assess acceptability and educating clinicians and women about the changes. No public information has been released about this phase, so it is not clear what has been done or who may have been consulted.
Other countries that have introduced HPV testing to their cervical screening programs have noted the importance of responding to women’s concerns around screening changes, especially when and how they receive information about HPV. Research also highlights some people’s reluctance to accept less-frequent screening.
How do we communicate change?
Screening programs generally change because the evidence about screening changes. It’s a good thing for screening programs to be responsive, to make adjustments when it becomes apparent harms may be occurring, or that benefits can be retained with less burden on participants and the health system.
Now, with the delay to the cancer screening register, there is an opportunity to take seriously the responsibilities of a screening program to communicate well with the population it serves.
The epidemiology that guides screening is complex, but its simple communication is a vital part of any public health program. Good communication and understanding what matters to stakeholders are as important as the scientific evidence that programs are based on.
In this case, a reasonable message to take from the petition opposing the renewal is that communication and consultation have not been sufficient or effective.
Meaningful public engagement and communication are neither easy nor cheap, but shying away from them is not an acceptable response.
Authors: Jane Williams, Researcher at the Centre for Values, Ethics and the Law in Medicine (VELiM), University of Sydney