Confidence in CervicalCheck has taken a blow but it is still saving lives
A demonstration in Galway City in 2018 in solidarity with the women and families affected by the CervicalCheck scandal. Photograph: Hany Marzouk
Last week, the World Health Organisation (WHO) launched its Recommendations on Best Practices in Cervical Screening Programmes — recommendations they created in collaboration with the HSE, National Screening Service and the Department of Health.
The report has put the work and expertise of CervicalCheck — Ireland’s cervical screening programme — in the spotlight on a world stage.
At the launch, Dr Partha Basu of the WHO’s cancer division, the International Agency for Research on Cancer (IARC), described the report as “Ireland’s gift to the world”. That said, it has come at a significant cost over the last five years.
The genesis of the report was Ireland’s experience of conducting a retrospective audit of invasive cervical cancer as part of a wider Quality Assurance programme. It brought population cancer screening programmes under immense political and public scrutiny and revealed a deep misunderstanding of what screening programmes could achieve, serious and hurtful failures in communicating the outcomes of the audit to affected women, and the lack of a clear legal framework on how to conduct such audits of invasive cervical cancer.
Ireland’s experience is instructive for others and the WHO report outlines how and why. By publishing its recommendations, the WHO seeks to avoid a repetition of Ireland’s experience in other countries. At its heart is a desire to inform and educate — the public, politicians, the media, the legal community, healthcare professionals — about what screening can achieve and perhaps more importantly what it can’t.
Traditionally when countries have introduced population cervical screening, the potential life-saving benefits of screening have tended to overshadow a critical qualifying message. The harsh reality is that it is not possible to achieve zero-error screening. The overwhelming majority of people will benefit from cervical cancer screening, and we have seen that in published reports from the National Cancer Registry with a consistent fall in the incidence and mortality from cervical cancer since the CervicalCheck programme began in 2008.
Cervical cancer screening in Ireland is a proven success. However, what gets less attention is the small minority of women — roughly 5 in every 1,000 women screened — who are ‘failed’ by the programme, some with life-limiting consequences. It is correct that some of these cases will be errors — real mistakes do happen in screening, as they do everywhere in healthcare — but from Irish and international data we know that this is only a small number.
The WHO report also advises on the future of retrospective audits of invasive cervical cancer. It recommends anonymisation of such retrospective audits and its purpose should be clearly explained as an opportunity for improvement from a whole of programme perspective. This would, of course, preclude the identification of individual women and make disclosure redundant. Instead, it recommends that any woman, diagnosed with cervical cancer despite participating in screening should be able to seek a review of their screening history. Such personal cervical screening reviews are now part of the CervicalCheck programme.
This would appear to be a particularly difficult and indeed unique situation facing Ireland with no other country in the world, with similar screening results, facing such potential legal liabilities. The results for cervical screening are likely to stay the same in Ireland and so this presents an ongoing liability.
To any objective outsider, it would appear that the very viability of such programmes must come under careful scrutiny. The likelihood of any new cancer screening programmes in Ireland would appear to be remote under the current legislative landscape. The WHO report does not shy away from this. It recommends that processes must be in place to ensure that the determination of medical negligence incorporates the inherent limitations of cervical cancer screening. The report reiterates that reviews of individual cancer cases are associated with hindsight bias which is known to play a significant role in the evaluation of an antecedent event in both medical and judicial settings.
It has been said that trust is earned by many deeds and lost by only one. There is no doubt that confidence in cervical screening and indeed in all cancer screening programmes was severely damaged by the fallout of the CervicalCheck retrospective audit. Despite the many improvements made to the CervicalCheck programme over the last few years, many of which were brought about by courageous and committed patients and staff, the reality is that the programme will still not find every cancer. But what has held firm throughout is the collective desire to encourage women to keep coming for their screening when invited.
Since the CervicalCheck programme was launched more than 64,000 women were treated for high-grade cell changes. Dr Basu has estimated this equates to many thousands of cases of cervical cancer avoided over that time and he celebrated those women in Ireland who are choosing to come for screening in very high numbers, and the provision of timely access to colposcopy and surgical treatment.
The WHO report makes clear the importance of everyone — policy-makers healthcare professionals, service providers, medical professional bodies, civil society organisations and patient groups, journalists and other media representatives — to get informed about screening, specifically its limitations and the recognition and acceptance, however difficult, that not everyone can benefit. It is a collective leadership approach that will be critical in building and then retaining confidence for patients and the public. Confidence builds trust and trust builds participation and more opportunities to save lives.
CONNECT WITH US TODAY
Be the first to know the latest news and updates
