Transparency data

UK NSC minutes November 2023

Updated 28 December 2023

These minutes are draft and will be ratified at the next UK National Screening Committee (UK NSC) meeting.

This hybrid meeting was held on 10 November 2023 at 39 Victoria Street, London, and via Microsoft Teams.

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, 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

• Rebecca Albrow – National Institute for Health and Care Excellence (NICE)
• Martin Allaby – Consultant in Public Health and Evidence-based Healthcare, NICE
• Peter Bradley – Government of Jersey
• Nicola Brink – State of Guernsey
• Suzanne Crowe – Ireland
• Lisa Douet – National Institute for Health and Care Research (NIHR)
• Colum Durkan – Isle of Jersey
• Dr David Elliman – Clinical lead for NHS Newborn and Infant Physical Examination Programme and NHS Newborn Blood Spot (NBS) Screening Programme
• Roberta James – Scottish Intercollegiate Guidelines Network (SIGN)
• Elizabeth Luckett – Senior Screening and Immunisation Manager NHS England South West
• Diane Matthews – State of Guernsey
• Professor Zosia Miedzybrodzka – Clinical Lead of the Scottish Genomics Network
• Steve Powis – National Medical Director, NHS England (NHSE)
• Angela Timoney – SIGN
• Deborah Tomalin – Director of Public Health Commissioning and Operations, NHSE
• Joanne UiChrualaoich – Ireland
• Hugo van Woerden – Isle of Man

1.3 UK Health Department officials

• Dr Carol Beattie – Northern Ireland
• Gareth Brown – NHS Scotland
• Alexander Cruickshank – Scottish Government
• Nimisha De Souza – Department of Health and Social Care (DHSC)
• Peter Jones – Welsh Government
• Meng Khaw – Public Health Wales
• Chloe Kelly – Scottish Government
• Lynn Larkin – Northern Ireland
• Laura McGlynn – Scottish Government
• Laura Parkhill – Northern Ireland
• Laurie Hayward – Welsh Government
• Dr Heather Payne – Acting Deputy Chief Medical Officer, Welsh Government
• Jack Price – DHSC
• Ray Smith – DHSC
• Dr Tasmin Sommerfield – National Screening Oversight (NHS Scotland)
• Helen Tutt – Welsh Government

1.4 Secretariat

• Prof Anne Mackie – Director of Programmes, UK National Screening Committee (UK NSC)
• Dr Cristina Visintin – UK NSC Principal Evidence Review Manager
• Silvia Lombardo – 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 – Head of UK NSC Information and Engagement Management
• Mike Harris – Head of UK NSC transparency and public understanding
• Zeenat Mauthoor – Secretariat Expert Committee and Policy Liaison Manager
• John Marshall – Evidence Lead

1.5 Apologies from members

• Professor Natalie Armstrong – Implementation Scientist

1.6 Apologies from observers / officials

• Angela Timoney – Scottish Government
• Colum Durkan – Isle of Jersey
• Diane Matthews – State of Guernsey
• Silvia Lombardo – Secretariat
• Suzanne Crowe – Ireland

2. Welcome and apologies

The chair, Prof Sir Mike Richards, welcomed all to the meeting and a round of introductions was carried out for those attending in person.

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 Natalie Armstrong’s apologies alongside those listed from officials and the observers’ list. Deputies were in attendance.

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 15 June 2023 meeting as a true and accurate record of the meeting and noted the Chair’s Action taken on MLD and anorectal malformations.

There were 12 actions identified from the June 2023 meeting which were noted as being in hand and/ or completed:

• Action 1: UK NSC secretariat to develop recovery plan – on the agenda

• Action 2: Heather Payne to enquire with MBRRACE-UK if potential queries relating to postnatal depression had triggered increased activity on the UK NSC web page for this condition – completed

• Action 3: Timeline for the publication and review of the UK NSC’s 2022/23 annual report to be shared with UK NSC Chair, 4 nations representatives and NHSE – completed and shared. See UK National Screening Committee annual report 2022 to 2023

• Action 4: Evidence map and consultation comments on vasa praevia (VP) to be referred to the FMCH expert group to consider further and explore what more research is needed to help progress this as a possible targeted screening programme – completed and on the agenda

• Action 5: Heather Payne to raise VP with MBRRACE to gather data and share with FMCH and RMG expert groups to gain a better understanding of current clinical practise in order to consider areas for research – completed

• Action 6: Screening for VP be added to a future UK NSC agenda (possibly November) – completed and on the agenda

• Action 7: Coversheet and evidence map on neonatal diabetes mellitus (NDM) to include a line that signals the UK NSC’s acknowledgement of the 2 studies ongoing in NDM – completed

• Action 8: UK NSC secretariat to write back to the 2021 submitter of neonatal diabetes screening submission and share the outcome and evidence map for their information – completed

• Action 9: Edit to the evidence map document on craniosynostosis page 6 to state that ‘there is clinical guidance/ standards on NIPE’ (rather than previous wording that there is not) – completed

• Action 10: UK NSC secretariat to write back to the 2021 submitter of craniosynostosis proposal and share the outcome and evidence map for their information – completed

• Action 11: UK NSC secretariat to share slides from the confidential presentation and paper on the in service evaluation (ISE) of HPV self-sampling with committee members to help further with the understanding of the ISE work – completed

• Action 12: UK NSC to discuss each component of the role/ offer of ISE at a future meeting to understand the purpose of each one – ISE to be added to a future UK NSC agenda – ongoing

Ongoing open actions were noted as follows:

• 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
• November 2022 – Secretariat to add Recommendation 4 on establishing a closer working relationship with NICE/SIGN to the UK NSC March 2023 agenda – in hand
• November 2022 – Paper on feasibility, addressing chief medical officers’ (CMOs’) recommendation 5 to be brought to the UK NSC meeting in March 2023 – in hand
• November 2022 – Report on international consensus on informed choice to be brought to a future UK NSC meeting once work has been completed – in hand

5. Matters arising – Director’s update

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

5.1 Nordic Screening Network meeting

On 28 September, the UK NSC hosted the annual meeting of the Nordic Screening Network in London welcoming screening colleagues from Denmark, Iceland, the Netherlands, Norway and Sweden. Delegates discussed and compared current screening practices, challenges and future developments in screening. See the UK NSC blog article Our friends in the north: UK NSC hosts annual Nordic Screening Network meeting. 

5.2 Cervical screening intervals change

There was no new update on this matter.

5.3 AI activity

The UK NSC noted the growing interest around the use of artificial intelligence (AI) in screening with recent calls for its use in lung cancer screening for nodule surveillance.

The UK NSC is in talks with NICE and the Royal Colleges about how to assess the effectiveness of this technology. There are also calls to look at the use of AI in the diabetic eye screening programme and the secretariat is liaising with the Health Technology Assessment (HTA) programme around the merits of a prospective study. In breast screening, a large prospective study The use of AI for image interpretation in breast cancer screening is being sponsored by the UK NSC. Both the UK NSC and NHSE are working with the National Institute for Health and Care Research (NIHR) on this.

The committee was made aware of recent correspondence from a manufacturer about this study and is keen for all interested manufacturers to take part in this multi-site multi-vendor study. Submission for stage 1 applications is due by 15 November 2023. Applications to be considered by the HTA funding committee will take place in January 2024.

6. UK NSC website and blog analytics

Mike Harris provided a verbal update on this item alongside confidential slides. It was reported to the committee that overall engagement with the UK NSC web pages remains consistent with most visits originating from within the UK but noting there had been considerable international engagement from the USA, Canada, Europe, India and Australia. The most viewed condition was lung followed by the 3 other recommended cancer screening conditions.

The committee was informed that a survey would soon open to all users to gather views on the UK NSC’s web pages. The survey would run for a few weeks, closing on 10 December 2023.

7. Stakeholder engagement

Jo Harcombe provided the committee with a verbal update on key stakeholder engagement items which included:

• the UK NSC’s collaborative module with the University of Warwick on health screening starting later this month
• publication of new dates for the screening masterclass: New screening masterclass dates announced
• launch of the new UK NSC seminars with the UK NSC hosting web-based events to enable stakeholders to learn together from leading experts and discuss important screening topics. Members and stakeholders are encouraged to check the web page and sign up to events for free

Additionally, there had been numerous face-to-face stakeholder meetings and correspondence about screening, which were all in hand.

8. Abdominal aortic aneurysm screening effectiveness work

Rad Latinovic was invited to the meeting to present this workstream to the committee for information and a confidential presentation was given. An effectiveness report on abdominal aortic aneurysm (AAA) screening was being undertaken following the programme’s 10-year milestone as a national NHS screening programme. The report will cover topics such as programme standards, mortality, incidence and prevalence rates, hospital admissions, acceptability, cost effectiveness and the effect of the COVID-19 pandemic, all underpinned by programme data. It is expected that the report will be completed in around 6 to 9 months’ time and will then be peer-reviewed and published.

The committee thanked Rad for the presentation and looked forward to seeing the report.

Action 1: AAA effectiveness report to be brought to a future UK NSC meeting once completed (expected in June or November 2024)

9. Blood spot task group

David Elliman presented this item to the committee and acknowledged progress to date. Key deliverables from this group included the publication of the EURODIS-UK comparison manuscript in The Lancet Regional Health – Europe in August: Policy-making and implementation for newborn blood spot screening in Europe: a comparison between EURORDIS principles and UK practice. In addition, the committee was pleased to hear that work on the NBS decision analytic model had now commenced and that the group had successfully appointed 3 PPVs to assist on this project. See UK NSC blood spot task group meeting notes.

10. SMA update

The committee heard that work was under way to develop the 2-fold recommendation for the spinal muscular atrophy (SMA) screening evidence review project. This project involves developing a new comprehensive and flexible cost effectiveness SMA screening modelling study for the UK screening context and starting to scope an ISE for newborn screening in SMA. Commissioning of the model has since been awarded following engagement with stakeholders and clinicians. Meetings have been taking place to discuss the ISE and there has been engagement from NHSE and the HTA. The committee was assured that updates would be communicated to stakeholders and members of the public via the UK NSC blog, with the most recent blog article on this topic having been published in August: Progress and next steps in the UK NSC assessment of newborn screening for SMA.

11. Targeted lung cancer screening working group update

Anne Stevenson provided a verbal update on this item, informing the committee that the current focus of the group was on the feasibility component of the work. A consultation on effectiveness standards would open shortly and would be published on the UK NSC web pages to gather views from stakeholders and members of the public. There is also work looking into incidental findings and more information will be shared in due course. The committee thanked Anne Stevenson for this update and no further comments were made.

12. Tyrosinaemia screening update

The committee was informed that 3 sub groups have been set up to help progress work on each branch of the recommendation to work towards introducing a newborn screening programme for tyrosinaemia type 1 (TYR1). These are OHID, clinical and lab subgroups. The groups have been progressing well and have also received national and international input. A report is expected in summer 2024. The committee thanked Anne Stevenson for the update and stated that it looked forward to receiving a report next year.

Action 2: Tyrosinaemia to be added to the June UK NSC meeting for provisional report to be presented to the committee

13. Screening for vasa praevia

Dr Sharon Hillier, Chair of the FMCH expert group, presented this item to the committee.

The committee was reminded that this item had initially been discussed at the June meeting but it was referred back to FMCH to review consultation comments and to consider possible next steps on whether there is scope to consider and provide guidance on possible research areas. Dr Hillier informed the UK NSC that FMCH did review the comments received during the consultation alongside the evidence map. Members were appreciative of the candid and personal stories shared about experiences of VP and its devastating impact on families. FMCH agreed with the reviewers that following examination of the suggested papers, they had been correctly excluded from the evidence base as 2 were published outside the UK NSC’s search dates and 2 fell outside the scope of the evidence map.

The UK NSC noted that although most stakeholders supported the introduction of a population screening programme for VP in pregnancy, the evidence remains insufficient to support a positive recommendation for screening to be made.

FMCH discussed the possibility of research and concurred that this is needed and would encourage researchers to consider this further and submit research requests to the RMG expert group to consider using the online request form: UK NSC RMG: submitting research requests.

FMCH thought that given the scope of research this should be led by experts in the field to address. In addition, FMCH suggested that clinical management of VP in high risk groups should be looked into and agreed to meet with colleagues from NICE and possibly the Royal Colleges to discuss further. The UK NSC concurred with the comments made by FMCH and agreed that a population screening programme for VP should not be introduced at this time due to lack of available peer-reviewed evidence. This included the low volume of epidemiological data on prevalence of the condition as well as uncertainties around the test accuracy.

The UK NSC is supportive of research being conducted further in this area to build the evidence base for a screening programme and would welcome proposals of such research to the RMG for further consideration. The committee stated that it is also keen that the secretariat meet with NICE colleagues to discuss VP clinical care management to see if more can be done.

Action 3: UK NSC secretariat to meet with NICE colleagues to discuss the clinical care management of VP.

14. Digital Pathology (minor programme modification)

Chair of the ARG, Dr Ros Given-Wilson, presented this minor modification proposal to the UK NSC. This proposal is to allow the use of digital pathology (DP) in existing cancer screening programmes as an additional screening tool to light microscopy (LM).

DP (whole slide imaging) is a technology that allows glass histopathology slides to be reviewed digitally on a computer screen. Current practice employs the use of immunofluorescent LM. The ARG received a presentation on the multi-centre validation of digital whole slide imaging for routine diagnosis that focused on the safety and importance of DP and examined its performance across various cancers. The findings of the study suggested that there was no significant disagreement between results obtained from LM and DP and found that pathologists were comfortable and able to use both modalities. Given that this was an operational matter but one of growing interest, it was agreed that this would be handled as a minor modification and a consultation of its use would be held.

A 6-week public consultation on the use of DP in the analysis of cancer screening samples was held on the gov.uk website, following a presentation at the ARG. The consultation looked to gather views on the use of DP and enable members of the public and stakeholders to submit further evidence on the use of DP in breast, bowel and cervical screening. The consultation excluded the use of DP in cervical cytology.

The consultation received 31 comments. The UK NSC and ARG both expressed gratitude for comments submitted. They noted that many comments supported the use of DP but that some concerns were raised. The consultation pack also included the findings of the 2020/21 evidence maps.

Based on the current evidence and comments received, the UK NSC supported the use of DP in screening as a permissive modification, meaning that this modality could be used where feasible in labs as an option to LM. It was emphasised that this recommendation was not a mandated recommendation for change but to allow labs that wished to use DP to do so. No further comments were made although NHSE stated that it was aware of labs using DP and was supportive of this. The UK NSC stated that audit of the use of DP would be important for labs to follow up on to ensure performance of both modalities continues to work and have the same outputs.

15. FMCH Group update

The UK NSC received a verbal update from the FMCH chair on discussions at the group’s September meeting where topics included VP and tyrosinaemia. In addition, the chair confirmed new appointments to the group and was pleased to have additional members to help fulfil the terms of reference for FMCH, given the UK NSC’s expanded remit.

16. ARG update

The ARG chair also confirmed new appointments to the group. Key discussions at the September meeting included digital pathology (tabled at this meeting), discussion on work in its early stages relating to multi cancer early detection tests (MCEDs), and providing comments on 2 commissioning documents from the 2022 annual call for topics.

17. RMG update

Dr Cristina Visintin gave a verbal update on the confidential work the RMG is involved in, included discussions had on MCEDs, and whole genome sequencing in newborns.

18. Any other business

Vice-chair Dr Shortland informed the committee of the recent announcement from Genomics England of its publication of the 200 rare conditions that would be sequenced and included in the Generation research study. The research study looks to explore the benefits, challenges and practicalities of sequencing and analysing newborns’ genomes. Dr Shortland will be keeping abreast with developments and will feed back to the UK NSC accordingly. More information about the Generation study can be found at: Newborn Genomes Programme, Genomics England.