By Susan Donlon, Communications Team, National Screening Service
The World Health Organization’s International Agency for Research on Cancer (IARC) met with the HSE’s National Screening Service, the Department of Health, and project stakeholders in Dublin on 5 July 2023 to discuss the CervScreen project process and outcomes.
Irish and international experts and academics gathered to discuss and launch a new report on best practice recommendations for cervical screening programmes globally. The Royal Irish Academy, steeped in its own history of encouraging discussion and debate between experts of the sciences, provided the backdrop for the meeting.
Welcoming everyone to the event on behalf of the Department of Health, Kate O’Flaherty said “our Minister and our government are committed to the agenda that this important work we’re launching here today contributes to.” Speaking about Ireland’s work implementing our national cancer strategy, our cancer screening services and, more specifically, cervical cancer screening, Kate said our work in Ireland and elsewhere is now being reshaped under the common global goal of the elimination of cervical cancer as a public health problem.
Talking about the collaborative 2-year project and its process, Kate paid tribute to the team in IARC, the Technical Working Group chairs, Irish and international experts, the time and commitment given by the team in the National Screening Service (NSS), and all the various stakeholders who brought different expertise and experiences to the project. These included clinical, scientific, technical, communications, and patient and public representatives and advocates who brought their lived experiences and wisdom to the project. Citing the many challenges and complexities a collaborative process can encounter, Kate lauded “the respectful and open inclusion of so many different and passionate views and feelings” throughout the process with the project drawing strength from diversity, enhancing the final outcomes.
Opening address
In her opening address, Director of IARC, Dr Elisabete Wiederpass, said the development of the best practice recommendations for cervical screening programmes is “critical” to meet the WHO cervical cancer elimination targets “by ensuring that these programmes are effective, efficient, and safe for all participants”. While the document builds on the lessons learned from the project developed for Ireland, it deals with the objectives set up in a global context “to support all countries in their future initiatives to implement quality-assured cervical cancer screening programmes”.
Panel discussions
Two panel discussions provided an overview of the development of the best practice guidance, the process and the challenges encountered, and its effect and application in an Irish context. Panels were facilitated by Clement Chauvet, Strategic Engagement and Resource Mobilization Specialist with IARC and National Screening Service Chief Executive, Fiona Murphy. Specific components of the report were discussed: programmatic audit in a cervical screening programme; legal and ethical frameworks; communications and stakeholder engagement; and interval cancers.
Programmatic audit in cervical screening programmes
Prof Peter Sasieni, Professor of Cancer Prevention in King’s College London and the National Screening Service’s Director of Public Health, Dr Caroline Mason-Mohan discussed programmatic audit. Speaking about the importance of programmatic audit for evaluating and improving the effectiveness of cervical cancer screening programmes, Prof Sasieni said: “If you’re going to introduce something at scale, as a public health activity, there is an ethical imperative to make sure that it is working, that it’s doing what you hope it’s going to do, and learn from what was done well, learn from mistakes, and continuously improve the programme.”
Dr Mason-Mohan provided the Irish context: “We have a quality assurance framework which standardises our approach to quality assurance across all of our 4 programmes, and audit is embedded within that framework.” Dr Mason Mohan said we have a programme of work from the framework to strengthen quality assurance, and welcomed the new best practice guidance saying it will add to what we already do on a systematic and regular basis in the NSS.
Recommended within the new report, individual case reviews are important to understand why a woman gets cancer after screening, Prof Sasieni explained, saying that cervical screening aims to prevent cervical cancer or to find pre-cancers and treat them with the aim of stopping them developing into cancer.
Clinical Director of the NSS’s CervicalCheck programme, Prof Nóirín Russell, welcomed the inclusion of individual case reviews in the new report and provided an overview of the new personal cervical screening review process available in the NSS since April 2023. Developed in consultation with a wide range of stakeholders, Prof Russell particularly acknowledged the valuable input and contribution from patients who have experienced cervical cancer after screening including members from the 221+ group and our patient and public partnership network.
Legal and ethical frameworks
Dr Arunah Chandran, Public Health Specialist for IARC, and NSS Public Health Specialist, Dr Alan Smith, discussed the challenges when developing recommendations for legal and ethical frameworks. “Screening is not a diagnosis of treatment,” Dr Chandran said, and legal and ethical frameworks mostly existed in the clinical areas of diagnosis and treatment.
Dr Smith discussed the recommendations for providing a clear legal framework for screening and Dr Chandran said the report recommends processes be put in place to ensure that the determination of medical negligence incorporates the inherent limitations of cervical cancer screening.
Informed consent was explored in-depth, keeping in mind that “participation in a screening programme should always be voluntary” Dr Chandran said. “If a woman gives consent to screening, that does not automatically translate to her data being used subsequently for research or a programmatic audit.” One of the key data protection recommendations in the report is the anonymisation and de-identification of data for programmatic audit. Dr Chandran added that “consent is definitely necessary for screening and we recommend de-identification of data for programmatic audit.”
Communications and stakeholder engagement
Prof Anne Mackie, Programme Director for the National Screening Committee in the UK, and NSS General Manager of Communications, Engagement and Information Development, Fiona Ness, discussed the importance of context for effective communications, providing trusted information in a format that people can understand and can engage with, and getting the balance right communicating the benefits, harms and limitations of cervical screening that allows people to make an informed choice. Recommended in the new report, knowing your stakeholders and mapping them is an important exercise, Prof Mackie said, to facilitate effective stakeholder engagement and to build trust.
Fiona outlined how the NSS has prioritised developing information around the benefits, harms, risks and limitations of screening since 2020. “Providing this information in an equal and equitable way, and clearly communicating that screening is a choice for people” is also a priority, Fiona said, “and we are developing decision-making aids to help people understand the decisions they make as part of the screening journey.”
Fiona added that we’ve co-created an engagement framework with our stakeholders which will be published shortly, and we’re developing an equity framework in the NSS which we will use to mobilise our messages in the community, and support specific communities to engage and communicate with their service users.
Interval Cancers
A definition of interval cancers is included in the new report which Prof Sasieni said “should be adopted by everyone”, saying that it’s tied to the screening interval used in each country. Prof Russell welcomed the definition saying the clarity and guidance is helpful to differentiate between those who are screen-detected and those who are diagnosed in between routine screening episodes.
The report recommends that measuring interval cancer rates gives a good indication of whether a screening programme is performing within standards and in line with international programmes. Dr Mason-Mohan said we’ve been working with the National Cancer Registry of Ireland to calculate an interval cancer rate, but that it’s important to do that within a framework where it can be benchmarked with our international colleagues.
Cervical Cancer Elimination
Before closing the meeting, Dr Partha Basu, Deputy Branch Head Early Detection and Prevention with IARC presented on the WHO’s global initiative to eliminate cervical cancer, providing the Irish context on our HPV vaccination programme, screening coverage data and compliance with colposcopy for screened-positive women.
“Ireland is well aligned with the EU commitment to eliminate cervical cancer,” Dr Basu said. “When I look at the Irish data it gives me a lot of confidence in the programme in Ireland. We hope the best practice document will further strengthen the programme.”
Adding that the collaboration has been a wonderful opportunity for IARC, Dr Basu said: “I consider this best practice document as a gift to the world from Ireland and we want to continue with this collaboration in other projects.”
Closing remarks
Responding to Dr Basu, Kate O’Flaherty welcomed the invitation for further collaborative opportunities. “While Ireland has its own unique local context and story around cervical screening, globally we have so much in common, and we look forward to working with the IARC team again.”
Closing the discussion, Fiona Murphy thanked IARC for the collaboration and all stakeholders who participated in the workshops when developing the best practice guidance. In particular, Fiona thanked patients for “their willingness to come and work with us and share their expertise and lived experience”. Fiona added, “their input will bear a legacy for what some of them have been through in the past few years and will now be in a document that will be seen to have a global impact. For the record, a huge thanks to them.”