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UK NSC minutes March 2023

Updated 24 July 2023

These minutes are final and confirmed as a true and accurate record of the UK National Screening Committee (UK NSC) meeting on 10 March 2023.

This was a hybrid meeting held via Microsoft Teams and at Mary Ward House, Tavistock Place, London.

1. Attendees

1.1 Members

• Professor Sir Mike Richards — Chair
• Dr Graham Shortland — Consultant Paediatrician, Cardiff and Vale University Health Board, Noah’s Ark Children’s Hospital for Wales (Vice-Chair)
• Professor Natalie Armstrong — Implementation Scientist
• Eleanor Cozens — Patient and Public Voice (PPV)
• Greg Fell — Public Health Expert
• Professor Chris Hyde — Public Health Specialist, University of Exeter
• Dr Bethany Shinkins — Test Expert
• Professor Anne-Marie Slowther — Reader in Clinical Ethics, Warwick Medical School, University of Warwick
• Dr Ros Given-Wilson — Chair of the Adult Reference Group (ARG)
• Dr Sharon Hillier — Chair of the Fetal, Maternal and Child Health Group (FMCH)
• Professor Sian Taylor-Phillips – Chair of the Research and Methodology Group (RMG) and Data Scientist

1.2 Observers

• Evette Wade — Republic of Ireland
• Rebecca Albrow — National Institute for Health and Care Excellent (NICE)
• Deborah Tomalin — Director of Public Health Commissioning and Operations, NHS England (NHSE)
• Professor Steve Powis — National Clinical Director for NHSE
• Professor Zosia Miedzybrodzka — Clinical Lead of the Scottish Genomics Network
• Clare Walker — Isle of Man
• Nicola Brink — State of Guernsey
• Diane Matthews — State of Guernsey
• Elizabeth Luckett — Senior Screening & Immunisation Manager NHSE South West

1.3 UK Health Department officials

• Ray Smith — Department of Health and Social Care (DHSC)
• Nimisha De Souza — DHSC
• Amy Redhead — DHSC
• Dr Heather Payne — Senior Medical Officer for Maternal and Child Health, Welsh Government
• Peter Jones — Welsh Government
• Helen Tutt — Welsh Government
• Laura McGlynn — Scottish Government
• Chloe Kelly — Scottish Government
• Tasmin Sommerfield — National Screening Oversight (NHS Scotland)
• Dr Carol Beattie — Northern Ireland
• Lisa Cromley — Northern Ireland
• Prof Niall O’Higgins — Chair of the National Screening Advisory Committee, Ireland

1.4 Invitees

• Nadia Permalloo — NHSE
• Dave Wright — NHSE

1.5 Secretariat

• Prof Anne Mackie — Director of Programmes, UK National Screening Committee (UK NSC)
• John Marshall — UK NSC Evidence Lead
• Dr Cristina Visintin — UK NSC Senior Evidence Review Manager
• Rebecca Dliwayo — UK NSC Evidence Review Manager
• Anne Stevenson — National Lead for Screening Feasibility, Evaluation and Development
• Jo Harcombe — National lead, informed choice, professional development and stakeholder engagement
• Mike Harris — Head of UK NSC public and professional engagement, information and knowledge
• Dexter Berridge — Stakeholder Engagement and Information Officer
• Dr David Elliman — Clinical lead for NHS Newborn and Infant Physical Examination Programme and NHS Newborn Blood Spot Screening Programme
• Zeenat Mauthoor — Secretariat Expert Committee and Policy Liaison Manager
• Fabrice Lafronte — UK NSC secretariat support officer

1.6 Apologies from members

• Professor Anneke Lucassen — Professor of Genomic Medicine, University of Oxford and Consultant Clinical Geneticist (present for first half of meeting)

1.7 Apologies from observers/ officials

• Gareth Brown — Director of Screening, NHS National Services Scotland
• Roberta James — Programme lead, Scottish Intercollegiate Guidelines
• Martin Allaby — Consultant in Public Health and Evidence-based Healthcare, National Institute for Health Care Excellence (NICE)
• Angela Timoney — Scottish Government
• Colum Durkan — Isle of Jersey
• Tracey Owen — Consultant in Public Health, Public Health Agency Northern Ireland
• Lisa Douet — National Institute for Health and Care Research
• Meng Khaw — Public Health Director, Public Health Wales
• Dr Tracy Owen — Consultant in Public Health, Public Health Agency Northern Ireland
• Prof Peter Bradley — Government of Jersey

2. Welcome and apologies

The chair, Prof Mike Richards, welcomed all to the meeting and a round of introductions was carried out for those attending in person. A warm welcome was extended to colleagues who dialled in.

The chair reminded attendees of the confidential nature of the discussions, presentations and papers prepared for the meeting and reiterated that these should not be communicated outside the meeting until their publication on the UK NSC website.

The meeting was attended by 11 members and was therefore quorate.

The committee noted committee member Anneke Lucassen’s apologies alongside those listed from officials and observers. Deputies were in attendance.

Some attendees who joined the meeting virtually had difficulty hearing all the discussions because of issues with the venue’s audio system.

3. Call for any new declarations of interests

Members were asked to provide an update on any new declarations of interest which may be relevant to this meeting. No new interests were raised.

4. Minutes of the last meeting

The committee approved the minutes from the 4 November 2022 meeting as a true and accurate record of the meeting.

An action from the June 2022 UK NSC meeting remained open and in hand:

• June 2022 – UK NSC to look into agreeing cost effectiveness thresholds and guidance as part of wider work to develop the new committee processes – in hand

Sixteen actions were identified from the November meeting. All actions were in hand, completed or superseded. Actions were for:

• Secretariat to add Recommendation 4 on NICE/ Scottish Intercollegiate Guidelines Network (SIGN) to the UK NSC March 2023 agenda – in hand

• UK NSC to send comments on the feasibility paper of Chief Medical Officers’ (CMOs’) recommendations to the UK NSC secretariat by 1 December 2022 – completed

• Paper on feasibility addressing CMOs’ recommendation 5 to be brought to the UK NSC meeting in March 2023 – in hand

• Paper on the role of Patient and Public Voice members (PPVs) approved for publication and recommendation to be marked as complete – completed

• An interim formal report on non-invasive prenatal testing (NIPT) to be added to the UK NSC March 2023 agenda – completed

• An interim formal report on severe combined immunodeficiency (SCID) to be added to the UK NSC March 2023 agenda – completed

• Report on international consensus on informed choice to be brought to a future UK NSC meeting once work has been completed – in hand

• UK NSC to develop a supportive clear, concise plain English document explaining the screening offer, who will benefit and the ethical principles behind the decision for newborn screening for tyrosinaemia – completed

• Secretariat to review responses on the coversheet for autism spectrum disorder (ASD) and to share this with the FMCH group alongside the suggestion to archive recommendation on ASD – completed

• ASD to be archived if the FMCH group agrees with the proposal – completed

• Prof Taylor-Phillips to share comments on pre-eclampsia with Cristina Visintin – completed

• Cristina Visintin to review the response provided in the iron deficiency anaemia (IDA) in children’s coversheet before publishing – completed

• UK NSC secretariat to share the proposal to archive recommendation on IDA in children with FMCH group – completed

• UK NSC secretariat to archive IDA in children recommendation with FMCH support – completed

• Secretariat to work on the coversheet and share the human t-lymphotropic virus type 1 (HTLV) post consultation papers with FMCH to consider whether the group supports the proposal to archive this topic – completed

• If FMCH supports, the UK NSC’s decision on HTLV this topic should be archived – completed

5. Matters arising – Director’s update

A verbal update was provided by Prof Anne Mackie for the following items.

5.1 Breast screening risk stratification workshop

The UK NSC held a workshop to hear from academic modellers on risk stratification in breast screening on 9 December 2022. The aim of the event was to bring together modelling work undertaken by 6 academic bodies and to explore the various directions each model had taken to consider the benefits and harms of introducing risk stratification into the breast screening programme. The event was well attended with fruitful discussion.

A commentary article focusing on the outcomes of the meeting is in development for potential publication in a scientific journal as well on the UK NSC blog.

5.2 DHSC work on change to cervical screening intervals

This item was initially presented at the March 2022 UK NSC meeting.

DHSC continues to work closely with NHSE on developing an implementation and communication plan to extend cervical screening intervals in England from 3 to 5 years that considers a variety of issues, including the required essential IT infrastructure. A feasible and practical plan will then be presented to ministers to facilitate a decision on the extension of screening intervals in the NHS Cervical Screening Programme.

5.3 Targeted lung cancer screening update

At the UK NSC meeting in June 2022, the committee recommended that a targeted screening programme for lung cancer should be introduced for people aged 55 to 74 identified as being at high risk of lung cancer. This has now been noted by ministers. As part of its recommendation, the committee suggested that the Targeted Lung Health Check (TLHC) programme should be used as a practical starting point for the implementation of the targeted screening programme in England. The committee also proposed aligning the screening programme with smoking cessation services within and beyond the eligible population. As further modelling work was needed, a task group was set up by the ARG. Work is currently under way, with members considering questions that should be included in the model.

5.4 Tyrosinaemia update

At its November 2022 UK NSC meeting the committee made a positive recommendation to introduce a newborn screening programme for Tyrosinaemia Type 1 (TYR1). A task group chaired by a leading expert in inherited metabolic diseases in the newborn has been set up to start work on the implementation of this recommendation. The terms of reference for this task group are currently in development.

5.5 Vasa Praevia

The committee was reminded that the public consultation on screening for vasa praevia is open and will close on the 3 June 2023.

6. UK NSC commercial engagement event

The chair presented this item.

The UK NSC held an information-sharing commercial event on multi-cancer early detection tests (MCEDs) on 21 February via MS Teams. This event gave commercial organisations an opportunity to familiarise themselves with how the UK NSC operates and they were informed about the type and quality of evidence required to support recommendations for a screening programme. A total of 12 companies from around the world attended the virtual event. They had all developed, or were in the process of developing, MCEDs to look for 2 or more cancers. Each commercial organisation gave a brief presentation on their product to UK NSC representatives in confidential MS Teams sessions. The products presented used a wide range of technologies and scientific approaches and were at varied stages of development, with some having already recruited participants to large clinical trials. The event was successful and produced mutually valuable information.

A blog article, Engaging with industry gives fascinating insight into potential of multi-condition tests for screening has been published about the event.

6.1 UK NSC website and blog analytics

Dexter Berridge, the Stakeholder Engagement and Information Officer for the screening team in the Office for Health Improvement and Disparities (OHID), provided a verbal update on the number of visitors engaging with the UK NSC website, the recommendations web app and blog. His presentation focused on illustrating the volume and trends in the level of public engagement with the UK NSC’s online presence, which will help identify future areas of development.

Members made several suggestions for further improving the analytics update for future meetings.

Action:

• Secretariat to speak to Nimisha De Souza regarding including data from the screening policy inbox in the analytics update
• Secretariat to get in touch with Deborah Tomalin offline to discuss possible collaboration with NHSE screening helpdesk over analytics data to include in future reports

7. UK NSC Annual Call (2022)

The chair presented this item.

The annual call for topics 2022 closed on 5 December 2022. Following the expansion of the UK NSC’s expanded remit, 30 submissions were received, the most ever received during an annual call. For the first time, following the committee’s expanded remit, submissions included proposals for targeted and risk stratified screening in addition to proposals for new population screening programmes, early updates, and programme modifications.

Decisions on next steps for the submissions received were made by the evaluation group on 11 January and supported by the relevant reference groups. The evaluation group agreed that a total of 19 topics, covering antenatal, newborn and cancer topics fell within the remit of the UK NSC to consider further. Nine topics were found to be outside the UK NSC’s remit and 2 proposals were reverted back to the submitters to ask for further information before a decision on next steps can be taken.

On 17 February, outcome letters were issued to the submitters. The UK NSC is now considering how best to progress the successful submissions that were shortlisted and incorporate them into the developing UK NSC’s 2023/24 workplan.

8. 18-month update presentation on non-invasive prenatal testing (NIPT) into the existing screening pathway for Down’s Syndrome, Edwards’ Syndrome and Patau’s Syndrome as part of the NHS fetal anomaly screening programme (FASP)

Nadia Permalloo and Dave Wright joined the meeting to provide a verbal update on the evaluative roll out of NIPT that started in the 1 June 2021.

It was confirmed that colleagues from the in-service evaluation team are developing a framework for evaluative questions to be answered and this will be shared with NHSE colleagues to report to the UK NSC by the summer of 2023.

UK NSC thanked NP and DW for their presentation. It was agreed that a full report will be presented at the FMCH meeting in May before being presented to the UK NSC.

9. 18-month report on the in-service evaluation for severe combined immunodeficiency (SCID)

David Elliman provided a verbal update on the evaluative roll out of SCID that started in September 2021.

The committee was informed that colleagues from the in-service evaluation team are developing a framework for evaluation questions to be answered and this will be shared with NHSE colleagues to report on.

The committee thanked DE for the presentation, and it was agreed that a full report will be presented for the May FMCH meeting before being presented to the UK NSC.

10. Fetal, Maternal and Child Health (FMCH) minutes

Dr Sharon Hillier presented a summary report of confidential developments following the FMCH meeting on 19 January 2023.

The UK NSC was informed that the 4 commissioning documents from the 2021 annual call for topics – on anorectal malformations, craniosynostosis, metachromatic leukodystrophy (MLD), and neonatal diabetes – have all been signed off by FMCH and external reviewers would be awarded through open and fair competition.

The group supported the UK NSC’s suggestion to archive 3 topics from the November UK NSC meeting – IDA in children, Autism and HTLV.

Blood spot task group work is progressing well. Following the UK NSC’s decision to look at the preterm pre-eclampsia questionnaire to stakeholders, the group provided constructive comments which enabled the secretariat to finalise the questionnaire.

11. Adult Reference Group update

Dr Given-Wilson provided a confidential verbal update of developments following the ARG meeting on 25 January 2023.

12. Research and Methodology Group (RMG) update

Prof Sian Taylor-Phillips provided a verbal update following the first meeting of the RMG on 17 January 2023.

The aim of the meeting was to introduce members of the group to one another, to the terms of reference, and to start discussions on the workplan and priorities of the group. The group is developing an application form for stakeholders to fill in when seeking formal advice. This form is currently being piloted. Work is ongoing to establish all of the processes and systems for interacting with other UK NSC committee members and secretariat.

13. Any other business

The next UK NSC meeting will be held on the Thursday, 15 June 2023.