Guidance

UK National Screening Committee stakeholder engagement strategy

Updated 6 February 2026

This publication describes how the UK National Screening Committee (UK NSC) engages with stakeholders.

The committee and its expert groups

The UK NSC is an independent scientific committee.

Its members include clinicians and academics with expertise in screening programmes, health tests, public health medicine, health economics, modelling, implementation science, ethics, data science and genetics, and patient and public voice (PPV) representatives.

The committee assesses evidence and only recommends a screening programme if it is confident that it would do more good than harm at affordable cost.

The committee is advised by expert reference groups. The membership of these groups includes:

• relevant clinicians
• academics
• test experts
• laboratory specialists
• public health experts
• patient and public voice (PPV) members

Expert group members understand population screening programmes. They help make sure the UK NSC’s evidence reviews ask the right questions, find the right evidence, and analyse and interpret the evidence properly.

PPV members consider the needs of the whole population that would be offered screening as well as those individuals and families who have a direct experience of the health condition being discussed.

Our stakeholders

UK NSC stakeholders are any individuals or organisations with an interest in one or more of the committee’s screening topics and recommendations.

The committee’s criteria and ethical framework emphasise the need to consider the perspectives and interests of a broad range of stakeholders.

The UK NSC must assess the benefits and harms of screening across the entire population. The committee therefore seeks input from:

• expert professionals, including clinicians, health economists, test experts, laboratory specialists and public health experts
• researchers
• individuals and families affected by a condition
• patient charities and interest groups
• the wider public who would be eligible for screening – most of whom will not be affected by the condition being considered

Why stakeholder engagement is important

Stakeholder engagement has always been important to the development of UK NSC recommendations.

Stakeholders provide perspectives that inform the reviews of evidence on new screening approaches and existing screening programmes. Actively working to seek and understand stakeholder views helps shape good policy, which has the best chance of helping people to have better health and make informed choices.

Effective and transparent stakeholder engagement helps make sure the UK NSC is updated on relevant developments and builds trust and confidence in the committee.

The UK NSC’s expanded remit, which includes targeted and stratified screening, means the committee needs to understand the views of a wider range of stakeholders than previously.

Screening programmes can only work effectively if they are acceptable. Stakeholder involvement is critical to understanding whether UK NSC recommendations, and the screening programmes that may follow, are acceptable and therefore likely to be taken up by the public.

The UK NSC’s ethical principles and its commitment to transparency and accountability are set out in the UK NSC ethical framework for screening.

Effective stakeholder engagement is important to support the UK NSC to:

• make informed screening recommendations that draw on stakeholders’ expertise, experience and views
• build trust and confidence in the committee through effective and transparent consultation, collaboration and communication
• keep up to date with relevant screening, research and clinical developments through ongoing communication with stakeholder networks
• consider the needs and perspectives of the whole population that could be offered screening

Engaged stakeholders:

• can provide the essential point of view of screening participants
• often have greater experience and expertise on specific issues, which they can share to inform UK NSC work
• can provide evidence, information, and ideas
• play important roles as advocates, sponsors, partners and agents of change
• can increase confidence in how recommendations are made
• help support successful delivery and implementation of screening recommendations

Aims of stakeholder engagement

The UK NSC aims to:

• take a proactive approach to stakeholder engagement
• build on existing stakeholder engagement activities
• develop new approaches to effectively capture and consider the views of any individual or organisation interested in a screening topic
• be proportionate, flexible, responsive and transparent
• be inclusive, engaging with a range of organisations, communities and voices
• involve stakeholders at appropriate stages
• use a variety of engagement approaches to suit the needs of different topics and stakeholder groups

How the UK NSC engages with stakeholders

The UK NSC determines the level and form of stakeholder engagement required on a case-by-case basis for each topic under review.

To make sure the UK NSC uses its resources as effectively as possible, it takes a proportionate approach to stakeholder engagement activities depending on the:

• topic
• stage in the review process that the engagement is taking place
• possible implications, impact, sensitivities and ethical issues arising from the consultation and potential recommendation/s
• amount and significance of new evidence available
• number, type, and complexity of questions being consulted on

Stakeholder identification

The UK NSC secretariat team supports the work of the committee but does not take part in its decision-making.

The secretariat uses ‘mapping exercises’ to identify relevant expert and PPV stakeholders who can contribute the required clinical expertise and PPV experience for screening topics under review. 

It does this at the start of the UK NSC evidence review process. This is the stage at which the committee commissions researchers to produce new evidence products on a screening topic or commissions a review of existing evidence.

Stakeholder identification helps make sure all relevant stakeholders can provide input into evidence reviews and other engagement activities.

Engagement activities

Stakeholders can submit new screening topic proposals for the committee to consider through its open call process. The UK NSC determines if open call proposals are within the committee’s remit and, if so, decides whether and how the proposals should be explored further.

Other UK NSC stakeholder engagement activities include:

• public consultations, workshops and dialogues
• focus groups and interviews
• webinars, podcasts and blog articles

The choice of engagement activity depends on the stage of the evidence review process and how much stakeholder input is needed. It also depends on the stakeholders’ role in the process, the topic under discussion and the need to balance available resources.

Stakeholder engagement at different stages

Scoping and commissioning

When undertaking an evidence review project, the UK NSC first prepares the scope of the questions that the review will address.

At this stage, the committee seeks input from stakeholders on a case-by-case basis. The UK NSC is more likely to involve stakeholders when it scopes the review of a new screening topic than when scoping the review of an existing topic that it reviews regularly. For existing topics, the scope of a review is usually driven by any significant new issues and stakeholder responses from previous consultations.

After the scoping phase, the UK NSC evidence team can, if appropriate, involve stakeholders in developing the protocol for any new evidence product(s) needed. Evidence products can include evidence maps, evidence summaries, systematic reviews, clinical and cost-effectiveness models and in-service evaluations.

Establishing the evidence base

The UK NSC typically begins evidence review work on a screening topic by commissioning an ‘evidence map’. This type of evidence product identifies the volume and type of published peer-reviewed evidence on a single question, or set of questions, on the topic.

An evidence map also aims to determine if a topic would benefit from further assessment using a different type of evidence product. Examples of more in-depth work could include a systematic review, cost effectiveness study, or disease modelling exercise.

Evidence maps are developed during the ‘filtration stage’ of the UK NSC evidence process. This is the stage when the focus is on finding robust published evidence on a topic and considering population health issues. Typically, a lower level of stakeholder involvement is needed at this stage. However, stakeholders are consulted on evidence map reports and are invited to flag any issues they think should be considered.

Involvement in evidence reviews

The UK NSC routinely reviews the evidence on screening for more than 100 conditions. See UK NSC recommendations.

Any individual or organisation can subscribe to updates on these recommendations. Subscribers receive copies of relevant reports when a topic is under review and are notified when a consultation opens.

The main function of the UK NSC evidence review process is to provide robust advice on screening to ministers and the NHS in all 4 UK countries.

The committee seeks to involve a range of stakeholders at various stages and for different types of work when their input will be most useful. This ensures stakeholder contributions are timely and considered appropriately.

Public consultations

The UK NSC holds public consultations and feedback exercises on its reviews of screening evidence. During these processes, it invites stakeholders to review evidence reports and submit feedback. Stakeholders can submit comments on behalf of a national body, in an expert professional capacity, or as individual members of the public.

Public consultations give stakeholders the chance to provide feedback on evidence reviews and flag issues they think should be considered. At this stage, stakeholders can help identify any perceived gaps in an evidence review or additional points for the UK NSC and its relevant expert group(s) to consider.

In response to consultations, stakeholders can:

• make an overall statement of their views on screening for a condition and on the standard of an evidence review
• express disagreements with a review’s recommendations or aspects of the review
• highlight potential inconsistencies in the interpretation of evidence included in a review
• alert the committee to questions or evidence that may have been omitted, or incorrectly excluded, from a review, and which may contribute to a recommendation
• suggest amendments to errors in the wording of review documents

Consultation responses are considered by the relevant UK NSC expert group or groups, including PPV members, and the evidence review authors. This assessment determines if the review report and its conclusions should be amended in any way.

More in-depth evidence work

The UK NSC usually seeks more stakeholder involvement if the initial work concludes that more in-depth ‘evidence synthesis’ would be useful. Evidence synthesis is the methodical process of bringing together information from various sources to answer specific questions and inform decisions.

For example, the UK NSC uses mathematical modelling to assess how a screening pathway might affect health outcomes. 

The committee often involves clinical specialists, affected individuals and families in these modelling exercises, for example through workshops. This involvement helps make sure the information put into models is correct and reflects what happens in real life. Stakeholders can help create realistic pathways that illustrate what would happen to people who receive a positive screening result for a condition.

The committee sometimes discusses other important issues highlighted in evidence reviews with stakeholders. These discussions might, for example, explore if:

• the proposed screening raises ethical concerns
• screening is acceptable and feasible
• people could make an informed choice on whether to take part

Some types of screening, for example the use of genetic testing, can raise ethical issues that extend beyond the specific screening programme being considered. When this happens the UK NSC might work with organisations or individuals with particular ethics expertise in these areas.

The committee might also run specialist communication exercises, such as stakeholder dialogues, that involve a range of groups and individuals.

In-service evaluation

Sometimes there is good evidence that a new or modified screening programme could work well, but important questions remain that can only be answered by testing the programme in real NHS services.

When this happens, the UK NSC might recommend testing the programme in NHS services. This is called in-service evaluation (ISE). During ISE work, it is important for the committee to work closely with clinical specialists and people affected by the condition (patients and families). This is especially important when looking at what happens after someone receives a screening result indicating a condition may be present. Getting input from expert clinicians and people with lived experience helps shape how a screening programme could work and be most beneficial in practice.

Finding out more

See UK NSC: evidence, consultations and reviews for more information about how the UK NSC makes screening recommendations, and how stakeholders and members of the public can be involved.

See UK NSC: about the UK National Screening Committee for more information about the role and structure of the UK NSC.

UK NSC Blog articles keep stakeholders informed and up to date on the latest developments. They provide another opportunity for stakeholders to engage with UK NSC proposals and respond to issues.

Review

The UK NSC commits to regular reviews of this strategy and its stakeholder engagement activities to make sure they are effective and fit for purpose.