Corporate report

UK National Screening Committee: 25 years of screening recommendations

Published 15 September 2021

The UK National Screening Committee (UK NSC) is celebrating 25 years of making recommendations on population screening.

The UK NSC advises ministers and the NHS in the 4 UK countries about all aspects of screening and supports implementation of screening programmes. It only recommends population-based screening for a condition when evidence proves it does more good than harm at reasonable cost.

As a result, evidence-based population screening in the UK enables people to make informed decisions about their health, prevents illness, saves lives and saves money. There have been many UK NSC achievements over the last quarter of a century.

1. Major achievements

During the past 25 years, the UK NSC has:

• recommended national screening programmes that have saved tens of thousands of lives, prevented huge amounts of serious illness and helped millions of people make better informed decisions about their health
• regularly reviewed its 109 screening recommendations on conditions ranging from abdominal aortic aneurysm to vision defects
• improved and streamlined its evidence review process, with clear, concise guidance for anyone wanting to propose modifications to an existing programme or suggesting a new screening topic for consideration
• provided expert screening advice to countries across the world, including Australia, Canada, France, Germany, Ireland, Japan, Mexico, the Netherlands, New Zealand, Qatar, Sweden and Ukraine
• been praised in a systematic review for implementing ‘the most integrated and evidence-based screening programmes in the world’^{[footnote 1]}
• become an official scientific advisory committee following the 2014 review of national health screening by parliament’s science and technology committee
• developed an approach to personal informed choice that emphasises the need for each individual to be supported to make the right decision about screening for them
• established a set of principles to inform ethical evaluations of specific screening proposals
• strengthened the criteria for appraising the viability, effectiveness and appropriateness of a screening programme, including taking into account the complexities arising from genetic screening
• introduced comprehensive quality assurance for every population-based screening programme offered by the NHS
• welcomed new and innovative screening tests for consideration, including non-invasive prenatal testing (NIPT) in antenatal screening, the faecal immunochemical test (FIT) in the bowel cancer screening programme and human papillomavirus (HPV) screening in the cervical screening programme
• commissioned, with Genomics England and Sciencewise, the largest ever public dialogue on the use of whole genome sequencing in newborn screening
• worked with the 4 chief medical officers (CMOs) to develop new terms of reference that embrace targeted screening in addition to population screening

2. Background to the UK NSC

Health screening existed in the UK well before the UK NSC first met in July 1996.

Much of it was delivered haphazardly, some was not backed by sound evidence, and for some programmes it was impossible to be sure if the screening did more good than harm. Participants in screening were seldom given adequate information about the likelihood of benefit and the potential for harm^{[footnote 2]}.

The importance of evaluating the effectiveness and efficiency of screening, through high quality research – ideally using randomised control trials – was first highlighted in the UK in 2 reports in 1968, one from the Nuffield Provincial Hospitals Trust^{[footnote 3]}, the other from the World Health Organisation (Wilson and Jungner^{[footnote 4]}). Both reports emphasised the ethical issues inherent in screening, the need for informed consent, and the need for a systematic approach to policy making and programme delivery.

By the 1990s, it was clear that an expert advisory committee, independent of government or of commercial conflicts of interest, was needed to ensure sound review of evidence for screening policy making. In 1994, Sir Kenneth Calman, the CMO of England, set out a framework for the evaluation of national screening programmes in the NHS. This highlighted the importance of basing screening programmes on high quality evidence and having rigorous monitoring, evaluation and quality control processes.

That led to the formation of the UK NSC, which over the past 25 years has made recommendations on screening to ministers and the NHS based on stringent criteria for assessing the evidence of screening’s effectiveness and appropriateness.

In the foreword to the UK NSC’s first report (April 1998), Sir Kenneth and the other 3 CMOs wrote:

Clearly quality cannot be taken for granted and a continued robust approach to assuring quality in existing programmes must remain a high priority… We need to be sure that the new technologies for screening are effective; that they will not cause more harm than good; that the health needs of people determine the necessity to screen; that false hope is not raised by screening for conditions where an effective cure or treatment is unavailable, and that people’s experience informs the continued improvement of screening services.

In its first year, with Sir Muir Gray as its first programme director, the UK NSC developed a framework covering the definition and classification of population screening programmes and the ethical and social issues of screening.

Ever since, it has made recommendations on the principles that:

• screening policy in the UK should be applied uniformly, based on evidence and an evaluation of the potential benefits and harms
• screening programmes should have realistic objectives, stringent and consistent processes and standards
• screening should be coordinated and standardised nationally, quality-assured and delivered by an expert, trained workforce
• there is an ethical need to provide balanced information to the public

Since Sir Kenneth, the UK NSC has had 4 other chairs: Dr Henrietta Campbell, Sir Harry Burns, Professor David Walker and Professor Bob Steele.

3. Principles

The UK NSC’s criteria for reviewing evidence and deciding whether or not to recommend screening for a condition are based on the 10 Wilson and Jungner principles ^{[footnote 4]}. They give the UK’s policy makers, health professionals and the public confidence that our national NHS screening programmes are viable, effective and appropriate.

Screening programmes which predated the UK NSC’s formation included those for cervical abnormalities, breast cancer, Down’s syndrome and phenylketonuria (PKU). The UK NSC created or consolidated standardised, managed, end-to-end quality assured processes for these programmes that are a feature of all today’s national NHS population screening programmes.

The UK NSC, with its comprehensive network of professional reference groups, now advises ministers on all aspects of screening, including the importance of quality assurance (QA), reliable data, national standards and a suitably trained workforce.

This rigorous evidence-based approach means our screening programmes are implemented safely, managed effectively and evolve and improve in response to new evidence.

4. Recommendations

Over the past 25 years, the UK NSC has developed its recommendations to the 4 UK governments covering more than 100 conditions, including recommendations to screen for more than 30.

Population screening can cause harms as well as benefits.

Population screening can cause harms as well as benefits

Possibly the greatest possible harm of screening is through overdiagnosis and overtreatment. For example, when introduced in the 1960s, cervical screening led to hysterectomy with consequent loss of fertility in numerous healthy young women. It was then realised that the majority of cell changes do not progress and that active monitoring or minimally invasive treatment is the preferred course of action.

The committee weighs up all potential pros and cons and its recommendations not to screen for a condition are just as important as its recommendations in support of a programme. Resisting calls for screening where a programme would not meet UK NSC criteria prevents unnecessary harm to healthy people and makes sure resources are used to best effect. A prime example of this is the committee’s recommendation on prostate cancer screening, which has enabled tens of thousands of men to avoid harmful overtreatment.

When recommending against screening, the UK NSC tries to help facilitate ongoing debate. In the case of screening for prostate cancer, the committee has organised regular workshops with stakeholders and continues to keep a close eye on research developments. The most recent of these gave researchers and charity representatives the opportunity to present the findings of their research, outline any ongoing work and have an open discussion with the UK NSC about developments in prostate cancer screening.

5. International reputation and consistency across 4 UK nations

The UK NSC is seen internationally as a best practice model for national population-based screening programmes^{[footnote 1]} and has provided expert screening advice to countries across the world.

The committee’s formation predated devolution and the creation of the Scottish parliament, the Welsh Assembly and the Northern Ireland Assembly. Since devolution, it has continued to make evidence-based recommendations to ministers across all 4 UK nations, helping to ensure high levels of consistency in screening policy and implementation from Belfast to Birmingham and from Aberdeen to Aberystwyth.

Applying the same agreed standards, QA processes and training regimes throughout the UK has helped provide assurance that screening in the UK is effective and efficient.

6. Balanced information and informed choice

embed introduction to population screening video

The UK NSC has brought a respected, evidence-based approach to the provision of information for the general public about population screening. This is reflected in the national screening information, resources and guidance published on GOV.UK.

Information is updated regularly as new data, evidence and ways of working emerge. This ensures that clear, accurate, up to date, accessible and balanced information is available, describing the potential harms and potential benefits of screening.

Public-facing information is now produced in a variety of formats to meet different needs, including translations, easy guides, animations and illustrations.

Presenting screening as a personal informed choice is among the UK NSC’s most important principles. This is particularly the case in antenatal screening where test results can lead to decisions about continuing with a pregnancy and choices about interventions that involve a risk of miscarriage.

In 2016, the UK NSC set up a 4 country public information task and finish group after the 2014 review of national health screening by parliament’s science and technology committee found there was no clear definition of the phrase ‘informed choice’ applied consistently across all programmes.

The task and finish group was chaired by Jane Fisher, director of the charity Antenatal Results and Choices (ARC) and a patient and public voice (PPV) member of the UK NSC.

The group came to a consensus on a draft definition following in-depth discussions and a literature review of the evidence. This draft was further refined after a consultation period and an agreed definition of personal informed choice was published on GOV.UK in 2018.

Personal informed choice is:

A decision made to accept or decline a screening test based on access to accessible, accurate, evidence-based information covering:

• the condition being screened for
• the testing process
• the risks, limitations, benefits and uncertainties
• the potential outcomes and ensuing decisions

There should also be the opportunity to reflect on what the test and its results might mean to the individual. Support must be available to potential participants to help them make a decision based on their individual context (which may include discussion of some aspects of the information as relevant to that person).

The word ‘personal’ was added to the definition to encourage potential participants to consider whether screening is right for their own unique circumstances.

Jane said:

We hope the definition shows that while the UK NSC is concerned with population screening programmes involving thousands, or sometimes millions, of potential participants, it recognises that a person-centred approach to their implementation is essential to ensure a high quality service.

The UK NSC has also helped to develop guidance to help the public understand the limitations of screening offered by private companies so that they can informed choices about whether to take it up.

7. Transparency

Over the years, the UK NSC has continually improved the openness and transparency of its work in making recommendations, responding to proposals and evaluating programme improvements.

Recommendations from an in-depth review of the UK NSC in 2015 led to a number of improvements to the way it works, including:

• greater transparency, for example by organising a stakeholder conference and piloting the annual call for topic proposals
• helping stakeholders to respond to public consultations by making review documents more consistent, and providing plain English summaries
• publishing a code of practice that covers oversight, performance, terms of business and membership

8. Stakeholder and public involvement

Stakeholder and public involvement is crucial to all aspects of UK NSC business. It helps to broaden the range of perspectives on screening topics, leading to more informed decision making. The stakeholder involvement process has evolved during the past 25 years and now incorporates ethical considerations.

The UK NSC’s national stakeholder conferences of 2016, 2017 and 2018 brought together a wide range of individuals and viewpoints to discuss and debate screening in general as well as specific issues around screening for certain conditions.

The annual call for screening topic submissions has also helped make the committee more accessible and broaden the range of conditions it can potentially consider.

In 2020, the committee launched a review into how it involves stakeholders and the public in its work. It mapped its engagement activities, carried out online surveys, focus groups and interviews with a wide range of stakeholders including topic experts and the public. These stakeholders provided clear feedback on how to improve engagement with the public.

The review recommended that the UK NSC should set out clear expectations for stakeholder and public engagement and be proportionate, flexible and transparent in its approach. Opportunities for effective engagement with the UK NSC now range from investigating the modelling of the cost-effectiveness of screening to discussing gaps in research evidence.

Nick Johnstone-Waddell, who co-led the stakeholder review, said:

We know that lots of people are really interested in the work of the UK NSC, for personal or professional reasons. Although many of them told us that they see the UK NSC as an important organisation doing vital work, sometimes it could be easier to get involved. It’s important that everyone can get their voice heard by the UK NSC. Following the stakeholder review, the UK NSC is considering ways to further improve its engagement with stakeholders and members of the public. These will be shared through the new UK NSC blog and website in due course.

One example of effective engagement was the public dialogue on whole genome sequencing in newborn screening (commissioned by Genomics England, Sciencewise and the Committee) that involved 130 members of the public, who generally supported the proposal provided proper safeguards are in place.

The UK NSC has PPV members who sit on its adult reference group (ARG) and fetal maternal and child health (FMCH) reference group and also participate in the committee’s ethics and AI task groups.

Maggie Powell, who has been a PPV member of the UK NSC since 2015, said:

I am glad that more has been asked of us as PPV members recently. It is encouraging and recognises the value of the patient and public representation and oversight of the committee’s work in reaching its policy decisions and recommendations. With the UK NSC’s future broader remit encompassing targeted screening I expect there to be an expanded role and contribution for the public and patient voice.

9. Ethical considerations

The UK NSC is increasingly required to make recommendations in areas that are socially contested, where evidence is lacking, or where there are differing ethical positions.

In 2020, the committee carried out a review of how it considers ethical issues raised by screening. It developed and tested an ethical framework and an ethical analysis process through an ethics task group on child-family cascade screening for familial hypercholesterolemia. The committee also considered the ethical issues raised by the restoration of the adult screening pathways during the COVID-19 pandemic.

These activities helped the committee refine its approach to ethics and led to the adoption of an ethical framework and set of values that will be reviewed regularly.

UK NSC ethics and stakeholder engagement consultant Catherine Joynson said:

Decisions about screening are not usually framed around the language of ethics, even though they almost always have an ethical element.

The UK NSC’s recent review of screening ethics brings into focus how different values and interests can be in tension and that often there will be a need for balancing across them. The new ethics tools embed ethical thinking into the UK NSC’s work, helping it reach thoughtful and robust recommendations in what is an increasingly contentious field of public health.

10. Education and training

The UK NSC has promoted a better understanding of population screening among policy makers, health professionals and the public. This has helped to make sure people in all 4 UK nations are well informed about the nuances of screening and its potential down sides as well as the potential benefits.

In addition to the many screening, training and education resources on GOV.UK, the committee has disseminated learning to health professionals through the book ‘Screening: Evidence and Practice’^{[footnote 2]}, the Warwick screening masters module and the screening masterclass.

The interactive masterclass, first set up by UK NSC pioneers Sir Muir Gray and Dr Angela Raffle, now runs at least 5 times a year for anyone involved in commissioning, managing or delivering screening. It unpacks the consequences of screening using practical examples and encourages challenge and debate.

Jo Harcombe, national lead for stakeholder information and professional education, who has co-facilitated the masterclasses with Dr Raffle for the past decade, said:

What stands out most is the motivation and energy of staff wanting to do screening well. Angela is a fabulous teacher and participants always comment favourably on the easy rapport and the practical plain English, jargon-free nature of the sessions.

The Warwick screening module has run every year since 2011 and is always fully subscribed. The module grew out of a desire from health professionals to have a greater understanding of screening as part of their public health training.

The University of Warwick carried out research to assess participants’ knowledge and attitudes to screening before and after the course. This assessment showed that participants gained significant understanding of the consequences of screening and the fact that it can do harm as well as good, especially when not well managed.

In recent years, large numbers of health professionals have also accessed and completed the Introduction to Population Screening e-learning programme.

11. Research and expansion of the evidence base

The UK NSC plays a significant role in encouraging and supporting screening research and development.

For example, in 2020 the committee partnered with Genomics England to carry out a public dialogue on the implications of whole genome sequencing (WGS) for newborn screening. The dialogue was co-funded and supported by Sciencewise, UK Research and Innovation’s public engagement programme.

For the UK NSC, the main aim of the project was to make sure public views are represented in UK NSC discussions around genomic newborn screening. The outcomes will also inform the design of a Genomics England research programme on whether and how WGS should be implemented in newborn screening. The research programme and dialogue exercise were included in the government’s ‘Genomics UK’ strategy published in September 2020.

The UK NSC has also been involved in cost effectiveness modelling for lung cancer screening. The cost effectiveness of a lung cancer screening programme in England was first assessed in 2018 and cost effectiveness was found to be uncertain. This caused much debate in the clinical field, charities, the general public and modellers alike. The UK NSC set up a consultation with stakeholders to inform a cost effectiveness analysis to be carried out by researchers at Exeter University.

The committee has also been involved in informing research on diabetic eye screening. This is particularly important as the number of people with diabetes continues to increase, putting the health service under considerable strain. Following a proposal to introduce automated image analysis using AI into the diabetic eye screening programme, the UK NSC has been working with developers and stakeholders to discuss options for further research, including guidance on study design to test the automated image analysis systems.

12. Driving quality improvements in treatment

The UK NSC’s rigorous criteria for the safe implementation of screening have driven improvements in many NHS treatment services.

The national rollout of the NHS Abdominal Aortic Aneurysm (AAA) Screening Programme for men aged 65 and over began in 2009 following a positive UK NSC recommendation to ministers.

Achieving the lowest possible morbidity and mortality from surgery to repair screen-detected aneurysms is crucial to the programme’s success. Before the programme’s implementation, the UK’s AAA surgery results were poor compared to other countries in Europe. The UK NSC’s recommendation in favour of screening was conditional on there being a quality improvement programme to improve these surgery results.

The UK NSC worked closely with the Vascular Society of Great Britain and Ireland (VSGBI) and the Department of Health to develop criteria for vascular surgery networks linked to AAA screening services and to support a quality improvement programme^{[footnote 5]}.

Since the implementation of the national quality-assured screening programme, delivered consistently against standard operating procedures, mortality rates for elective AAA repairs have fallen significantly from a 2008 baseline measure of 7.5% to between 0.4% and 2.3% ^{[footnote 6] [footnote 7] [footnote 8] [footnote 9]}.

Jonothan Earnshaw, the first clinical lead of the NHS AAA Screening Programme, said:

The national NHS AAA Screening Programme has had a hugely positive impact on both patients and vascular surgery services in the UK.

The quality improvement programme recommended standards for vascular services that were enshrined in the Vascular Society’s Provision of Vascular Services. These were matched by the same standards for vascular centres embedded in the national screening programme. Basically, the number of centres providing AAA repair was halved, since higher volume centres had better results, and vascular surgery became a specialist service requiring a hub and spoke model of provision.

The UK has seen sustained improvements in elective surgery outcomes. The introduction of AAA screening has also increased the focus on patients who have small aneurysms. They are now managed medically in the surveillance arm of the screening programme and offered help and support to improve their health in preparation for surgery.

13. The next 25 years

What will the next 25 years have in store for the UK NSC? It’s hard to know for sure but the committee will continue to strive to keep screening programmes in the UK among the best in the world and to make sure they benefit the most people possible.

The UK NSC will continue to horizon scan to look for new technologies, tests and opportunities to improve the nation’s health. As Prof Bob Steele, the UK NSC’s current chair, said in a recent blog article:

Looking ahead to the future of screening and the UK NSC, there are several challenges and opportunities over the next few years. The move to considering targeted screening for high-risk groups and stratified screening more tailored to the individual is one example. Similarly, the genomics revolution will also have a profound impact on the way we work in the not-too-distant future.

Thanks to our wonderful NHS, I believe our population screening programmes here in the UK are second to none, and long may that continue. Having said that, we must avoid complacency. Screening is an imprecise science and there will always be room for improvement.

To find out more about screening and the work of the UK NSC, access the short, free and highly interactive Introduction to population screening e-learning module.

14. References

1. F.Seedat, J.Cooper, L.Cameron, S.Stranges, N-B.Kandala, H.Burton, S.Taylor-Phillips (2015). International comparisons of screening policy-making: A systematic review. University of Warwick Medical School. ↩ ↩²

2. Raffle AE, Mackie A, and Gray JAM (2019) Screening: Evidence and Practice. 2nd edition Oxford University Press. ↩ ↩²

3. Nuffield Provincial Hospitals Trust (1968) Screening in Medical Care ↩

4. Wilson JMG and Jungner G (1968) The principles and practice of screening for disease. Public Health Papers no. 34. Geneva: World Health Organisation ↩ ↩²

5. J.J.Earnshaw, D.C.Mitchell, M.G.Wyatt, P.M.Lamont, A.R.Naylor (2012) Remodelling of Vascular (Surgical) Services in the UK. European Journal of Vascular and Endovascular Surgery Volume 44, Issue 5, November 2012, Pages 465-467. ↩

6. Abdominal aortic aneurysm, improving outcomes for patients. The Health Foundation. ↩

7. Vascular Services Quality Improvement Programme. ↩

8. J.Jacomelli, L Summers, A Stevenson, T Lees, JJ Earnshaw. Impact of the first 5 years of a national abdominal aortic aneurysm screening programme. British Journal of Surgery, Volume 103, Issue 9, August 2016, Pages 1125–1131, https://doi.org/10.1002/bjs.10173. ↩

9. Vascular Society of Great Britain and Ireland Yearbook 2020. ↩