Interval Cancer Expert Reference Group Reports
Implementation update - March 2022
Background
The National Screening Service (NSS) welcomed the publication by the HSE of the Expert Reference Groups'(ERG) Interval Cancer Reports in October 2020 and continue to work towards the implementation of the recommendations. The recommendations of the ERGs provide a design for interval cancer review (patient-led and programmatic review) which supports quality assurance within each programme and which is in line with international best practice for cancer screening programmes.
To implement the recommendations of the ERG reports, a steering group and five working groups have been established. The groups are CervicalCheck; BreastCheck; BowelScreen; Legal Framework; and Communications. The steering group communicates progress to the NSS Quality, Safety and Risk Management (QSRM) Committee and HSE management.
Membership of our groups is diverse, including representatives from patient and public advocacy groups, primary care, cancer screening experts, public health, legal experts, communication specialists, medical ethics and health economics.
March update
Our working groups continue to progress their specific implementation plans.
The CervicalCheck group are focusing largely on the design of patient-requested reviews and disclosure processes. The process of patient-requested reviews has two parts. Part one includes determining eligibility and reviewing programme relevant documentation which will be managed by the CervicalCheck programme. Part two involves review of cytology, colposcopy and histology. Resourcing requirements of part two pose the most difficulty and challenge as this will involve staff and expertise outside of the CervicalCheck programme. Dedicated workshops are being conducted to expedite agreement of patient-requested review and disclosure processes.
Additionally, consultation has recently concluded with women diagnosed with an interval cervical cancer. The consultation process has resulted in recommendations for improving audit and disclosure processes. The recommendations will be presented to the Interval Cancer Steering Group meeting in May 2022 and incorporated into the review and disclosure design process.
The BreastCheck group continue to strengthen established patient-requested review processes. Data retention and disposal policies have been set up to comply with GDPR. Recommendation seven of the BreastCheck ERG report has been fully implemented and is now closed.
The BowelScreen group has implemented recommendation three and four arising from the BowelScreen ERG report. All national endoscopy units have been informed of the new form to record PCCRCs from non NCRI sources and the memorandum of understanding between BowelScreen and the endoscopy units has been updated to note same. This group continues to collaborate with the Communications group to develop patient information to enable informed choice and consent.
All above implementation groups continue to work closely with the NCRI / NSS Strategic Planning Group to progress the calculation of interval cancer rates.
The Legal Framework group are finalising an interim legal report which details key findings and recommendations concluded by this group. Three pieces of research are ongoing in the areas of law, health ethics and health economics. The outcomes of this research will provide the evidence base to support the groups’ decision-making process in the development of the final recommendations and will allow for the final legal report to be produced.
The Communications Interval Cancer Implementation Group has concluded its three-stage qualitative and quantitative research to determine the attitudes and knowledge of the public towards screening. Stage one of the research comprised of interviews with healthcare professionals engaged in the provision of screening services. Stage two involved the execution of a large-scale online questionnaire targeting 2,000 service users across all screening programmes. The final stage involved the conduct of focus groups to explore more deeply some of the findings of the large scaled questionnaire. A summary report of all research findings has been developed. An action plan has been created and is currently being implemented through NSS communications work to build trust and confidence of the public in screening. The actions support the wider HSE’s Trust and Confidence Action Plan.
We are planning a series of engagement exercises with the aim of enhancing the general understanding of cancer screening services, improving trust in HSE cancer screening services and ensuring resilience of our screening programmes into the future.
Collaboration with International Agency for Research on Cancer
Aligned to the Interval Cancer Implementation Project, the NSS, Department of Health, and the International Agency for Research on Cancer (IARC) (part of the World Health Organisation), have formed a collaboration to prepare strategic guidance on best practices related to cancer screening implementation. The collaboration aims to:
- Develop best practices for conducting cancer audits in cervical cancer screening programmes
- Emphasise good practices and key considerations including a checklist for transparent & pragmatic communication with the public, service providers & other stakeholders (related to benefits, inadequacies & harms of cervical cancer screening)
- Develop best practices and a legal framework that will better safeguard the interests of screening participants, providers, and managers
Three working groups along with a stakeholder advisory forum have been established to progress the initiative. Initial meetings have taken place with the working group leads and the stakeholder advisory group co-chairs. The working groups met for the first time in early March to consider the objectives of the collaboration and what are the specific elements to be included in each working group.
Members of the Interval Cancer Project implementation groups are participating in the IARC/NSS/DOH collaboration to promote alignment and build on the significant work already under way.