Guidance

UK NSC stakeholder engagement strategy 2022 to 2024

Updated 15 September 2023

1. Overview

The 4 Chief Medical Officers (CMOs) have agreed an expanded remit for the UK National Screening Committee (UK NSC), to consider population, targeted and risk stratified screening programmes.

Stakeholder engagement has always been important to the development of UK NSC population screening recommendations. It will continue to be crucial as the UK NSC remit expands and the committee needs to understand the views of an even wider range of stakeholders. The UK NSC recognises that stakeholder engagement is not a one-off activity. It is a continuous and evolving process.

Stakeholders provide an important perspective to inform the UK NSC recommendations to the 4 UK devolved governments.

2. Aims

The expanded UK NSC will take a proactive and innovative approach to engaging with stakeholders.

It aims to:

• build on existing stakeholder engagement activities
• develop new approaches to effectively capturing and considering 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 all appropriate stages, both during and between evidence reviews
• use a variety of engagement methods to suit the needs of different topics and stakeholder groups

The stakeholder engagement mechanisms outlined in this document explain how the UK NSC plans to engage effectively with stakeholder groups under its expanded remit.

3. UK NSC stakeholders

UK NSC stakeholders are any individuals or organisations with an interest in one or more screening policy topics/recommendations.

They include anyone who could input into, or be affected by, screening policy. They also include anyone who could be a participant in, or be involved in the delivery of, a new or modified publicly funded NHS screening programme.

The committee will engage both with stakeholders who are, and who are not, eligible for population, targeted or stratified screening.

Engaging with people who are not eligible for a particular targeted screening programme will give an insight into how acceptable or potentially controversial that programme might be.

It is important that stakeholders can act as critical friends. These are individuals and organisations who can ask probing questions, provide different perspectives, and challenge the committee.

Stakeholders include:

• members of the public
• groups representing patients and carers
• condition-specific interest groups
• groups who may be at elevated risk of a condition based on ethnicity, occupation, lifestyle or other factors
• voluntary organisations
• charities
• organisations that develop guidelines and set standards, such as the National Institute for Health and Care Excellence (NICE) and the Scottish Intercollegiate Guidelines Network (SIGN)
• healthcare professionals involved in screening programme delivery
• academics
• industry groups in relation to research and development
• royal colleges and other professional organisations
• international screening and programme colleagues
• other topic experts

Many stakeholders register their interest with the UK NSC by subscribing to updates on a topic.

4. The importance of stakeholder engagement

The UK NSC recognises and appreciates the input that stakeholders provide. The UK NSC will continue to work to engage with the right people at the right time and in the right way to:

• capture, consider and represent the wider views of stakeholders under the committee’s expanded remit
• support and encourage further engagement
• provide an opportunity for the UK NSC to communicate its work and explain it to stakeholders

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

Actively working to seek and understand these views helps ensure that policy recommendations include such considerations. This in turn helps shape good policy, which has the best chance of helping people to have better health and make informed choices.

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

Engaged stakeholders can:

• provide the essential point of view of screening participants
• often have greater experience and expertise on specific issues, and can help innovate in important, appropriate ways
• provide evidence, information, and ideas
• play important roles as advocates, sponsors, partners and agents of change
• have confidence in how recommendations are made
• help support successful delivery and implementation of screening recommendations

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:

• health condition
• 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

5. How the UK NSC engages with stakeholders

The UK NSC uses stakeholder mapping exercises to:

• prioritise different stakeholder groups for conditions under consideration
• determine how best to engage with stakeholders regarding the development of an evidence product, taking a proportionate approach

The UK NSC uses a range of engagement activities that involve interaction with and direct input from its broad range of stakeholders.

Stakeholder engagement includes any of the following activities:

• regular routine evidence review consultation
• workshops
• focus groups
• interviews
• webinars
• podcasts
• blog articles
• dialogues

The choice of engagement activity depends on the degree of involvement and input required from stakeholders, their role in the process, the subject under discussion and the need to balance available resources.

The UK NSC will continue to take a sensitive, agile approach to how and when it engages with stakeholders, being mindful of the context and using evidence from previous user research and stakeholder feedback.

5.1 Stakeholder involvement in development of evidence products

The UK NSC examines evidence relating to the possible introduction, continuation, modification or cessation of screening programmes for health conditions.

The UK NSC invites relevant stakeholders to input into the development of evidence maps and other evidence products. Stakeholders are also invited to participate in the UK NSC’s regular consultations on whether screening should be recommended for a condition.

The committee considers topics that come from the following routes:

• regular reviews of its screening recommendations on more than 100 conditions
• the annual call for topics for suggested new screening programmes
• proposed modifications to existing screening programmes
• suggested early updates of existing screening recommendations
• suggestions that screening for a condition should stop

Interested stakeholders can participate in any of the above routes.

Regardless of the route, the UK NSC begins its evidence review process by developing an evidence map.

5.2 Evidence maps

Evidence maps look at how many papers have been written and published about the condition, and whether a screening programme might be a good way of improving outcomes. In most cases there will be a lot of existing evidence reviews. The focus of an evidence map will usually start with examining previous reviews and consultation comments.

If the evidence map suggests more in-depth work is needed, for example where numerous papers exist, the UK NSC will commission a more detailed collection and analysis of the scientific papers.

5.3 Expert groups

The UK NSC has expert groups that help make sure evidence reviews ask the right questions and analyse the evidence properly. They also help ensure subsequent reports are written in a way that is clear and accessible to all readers. The expert groups are made up of health professionals with expert knowledge of the condition being considered. The groups also include academics and public and patient voice (PPV) representatives. Once the group is content with a report it is published on the UK NSC website and wider stakeholder views are requested.

Over the years the UK NSC has formed links with stakeholders with particular interests in different conditions. As well as online publication, the UK NSC sends copies of relevant reports directly to these stakeholders.

If the expert group consider that a description of the whole screening pathway is necessary to inform a screening recommendation, the UK NSC will ask people affected by the condition, and expert clinical stakeholders, to help describe the pathway so that it best reflects a person’s experience.

5.4 Modelling

The expert group then assesses the impact of this pathway on health outcomes using a mathematical model. They invite stakeholders to review the findings of this assessment to make sure they reflect real life and are explained clearly. This is particularly useful where evidence is limited and/or where the condition is very rare.

If an evidence review reveals other issues, for example around ethics, acceptability, feasibility, or informed choice, the committee also shares and discusses these with relevant stakeholders.

Very occasionally, there are considerations that extend well beyond screening programmes, for example the use of genetics. In such cases the UK NSC adopts a bespoke approach that may include working with specific stakeholder organisations with health care ethical expertise.

5.5 Consultations

The UK NSC holds 12-week public consultations on its reports on screening topics, inviting stakeholders to review the evidence and submit comments. Stakeholders can select how they want to submit their comments to the UK NSC. They can do so either in an expert/professional capacity or as a member of the public.

5.6 Website and blog

The committee aims to provide clear, concise, transparent and accessible information on the UK NSC website, covering:

• definitions of population, targeted and risk-stratified screening
• UK NSC decision-making processes and rationales
• the evidence review processes
• how the committee engages with stakeholders and how stakeholders can get involved in the evidence review processes
• the committee’s aim to be proportionate, inclusive, flexible, and responsive in the way it reviews evidence
• supporting documents, such as minutes of meetings

It also aims to provide concise content about the UK NSC processes and decisions which then links to more detailed information for those stakeholders who wish or need to access it.

UK NSC blog articles, podcasts, video messages and other multimedia content should link to the main website content. Blog articles provide another opportunity for stakeholders to engage with the UK NSC proposals and respond to issues.

6. Review

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

It will do this through:

• an online survey every 2 years (to be kept under review)
• a UK NSC member evaluation workshop every 2 years (to be kept under review)
• talking with stakeholders during the activities outlined in this document