Research and analysis

Review of stakeholder and public involvement at the UK National Screening Committee

Published 27 January 2022

1. Executive summary

The UK NSC has undertaken an internal review of the way in which it involves stakeholders and the public in its work.

To inform the review, we mapped current engagement activities, carried out online surveys, and organised focus groups and interviews with stakeholders to gather feedback.

We found the purposes of stakeholder and public involvement can be summarised into 3 main categories.

1. Creating informed, practicable and thoughtful screening recommendations by drawing on expertise, experience and views.
2. Building trust and confidence in the UK NSC through effective consultation, collaboration and communication.
3. Keeping abreast of relevant developments through ongoing engagement with stakeholder networks.

The UK NSC has a wide range of stakeholders, such as topic experts, the general public and policy stakeholders.

Currently, stakeholders and the public are involved in a range of ways, for example through committee membership and as contributors to evidence reviews. Investigations such as cost-effectiveness modelling exercises, ethical analyses, and discussions with the research community about gaps in the evidence create particular opportunities for effective stakeholder and public involvement.

Feedback from stakeholders suggests that they value the UK NSC as an organisation, but it can be unclear how they can get involved and how their contributions are listened to. We also heard that there can be a lack of transparency about the processes of the UK NSC and that communications could be more inclusive.

The review recommends that, in future, the UK NSC should set out clear expectations for stakeholder and public engagement and should be proportionate, flexible and transparent in its approach.

Considerations include:

• building on current activities, for example by being clear about when and why stakeholders are involved and how this informs our work
• developing new approaches, for example by utilising the website and other online methods of engagement, and exploring different ways in which patients and the public can contribute
• ensuring any future activities are properly resourced and regularly evaluated

2. Purpose of this review

2.1 Background

A 2015 review of the structure and processes of the UK National Screening Committee (UK NSC) found stakeholder involvement to be a crucial component of all aspects of our business. The importance of this has been highlighted by a number of other bodies, such as the House of Commons Science and Technology Committee and the Nuffield Council on Bioethics.

Many of the recommendations of the 2015 review and of other bodies have been implemented, such as establishing an annual call for screening proposals, producing plain English summaries of evidence reviews and clarifying how stakeholders can input to a screening review. However, there are likely to be ways in which we can further improve our relationships with stakeholders.

With the Department of Health and Social Care (DHSC) becoming the UK NSC secretariat’s host organisation in 2021, and changes to our remit under consideration, it was timely to review progress and re-examine why and how stakeholders and the public are involved in our work. This internal review aims to inform discussions about the way in which the UK NSC engages with stakeholders and the public as the organisation enters its next phase.

2.2 Methods

In this review, we use the term ‘stakeholders’ to mean people and organisations with a professional or particular personal interest in screening or a screening programme, and ‘members of the public’ to refer to everyone else.

The review was carried out by Catherine Joynson (Ethics & Stakeholder Engagement Consultant) and Nick Johnstone-Waddell (Public and Professional Information Lead, Public Health England (PHE) Screening), with support from the UK NSC secretariat. Various elements informed the research.

Mapping of current activities

We mapped the ways in which the UK NSC involves stakeholders or has done so in the recent past.

Analysis of consultation respondents

Consultations on evidence reviews are one of the main opportunities for stakeholders and the public to contribute to our work. We analysed responses to 43 consultations that took place between February 2017 and February 2020.

Stakeholder survey

We opened a survey to gather feedback on stakeholder and public involvement at the UK NSC between 13 November and 15 December 2020. The survey was publicised through the PHE screening blog, social media and direct email to the UK NSC stakeholder contact list. Responses were received from 198 people.

Internal survey

We circulated a survey to members of the UK NSC, its 2 main reference groups – the Fetal, Maternal and Child Health Group (FMCH) and the Adult Reference Group (ARG) – and the UK NSC secretariat in November. There were 28 responses.

Focus groups and interviews

We carried out 2 focus groups and 5 individual interviews (15 people in total) with stakeholders in February 2021. The participants had volunteered to take part via the external survey. They were a mixture of patient charity representatives and healthcare professionals.

Discussions of the outcomes of these activities and their implications took place at meetings of the UK NSC, ARG and FMCH in spring and summer 2021. This report outlines a summary of the findings and suggestions for future working.

3. Importance of stakeholder and public involvement

3.1 Purposes of stakeholder and public involvement

The purposes of stakeholder and public involvement at the UK NSC identified during the review can be summarised into 3 main categories.

1. Creating informed, practicable and thoughtful screening recommendations by drawing on expertise, experience and views.
2. Building trust and confidence in the UK NSC through effective consultation, collaboration and communication.
3. Keeping abreast of relevant developments through ongoing engagement with stakeholder networks.

Respondents to the internal survey expressed these purposes in a range of terms, for example:

• “ensuring that the work of the UK NSC reflects the concerns and interests of the public”
• “to educate good decision making by exposure to wider opinion”
• “to improve communications with stakeholders and make sure that the decisions behind the UK NSC recommendations are understood”
• “to allow stakeholders to participate in the UK NSC process and feel valued”
• “to ensure that the committees are aware of all the potential issues”

3.2 Potential downsides of stakeholder and public involvement

Some people also raised potential downsides of stakeholder and public involvement during the review. These included the:

• difficulty of gaining a representative view of the screened population
• difficulty of taking personal stories into account when making recommendations that are largely guided by research evidence
• risk of stakeholders becoming disillusioned if it appears that their views have not been acted upon
• significant resources and time required to carry out engagement activities

These potential downsides highlight the importance of clear communication with stakeholders and of dedicating resources to ensuring stakeholder and public involvement is carried out thoroughly and thoughtfully.

3.3 DHSC’s guide to stakeholder engagement

These findings align with the DHSC guide to stakeholder engagement (2018). It suggests that engaging properly can deliver a range of benefits but getting it wrong can be costly.

Benefits of good engagement are:

• stakeholders often have greater experience and expertise on specific issues, and can help innovate
• stakeholders can provide evidence, information and offer workable solutions to the policy you are working on
• stakeholders play important roles as advocates, sponsors, partners and agents of change
• stakeholders are more likely to be supportive of a policy where they have been effectively engaged
• engaged stakeholders will bring leadership and energy to support successful delivery and implementation

Result of poor or inadequate engagement are:

• weakens policy-making, risking decisions being made with inadequate information
• potential risk of legal challenge
• can require additional resource to resolve issue(s) in addition to redoing the process properly
• can delay the development or implementation of policy/projects, with associated knock-on costs
• can generate resistance that makes the task of implementation that much harder
• damages our credibility in the short term and risks future interaction with stakeholders

Good practice

The DHSC guide sets out the following ‘golden rules’. Engagement should be:

• open and transparent
• proactive and timely
• inclusive
• proportionate and flexible
• responsive and reciprocal

In order to implement these rules, the DHSC expects its staff to:

• adopt a ‘no surprises’ approach, sharing information, being open about what has been decided and what is still open to influence
• engage early and often, discussing emerging issues and giving stakeholders a genuine influence over policy development
• be clear about what input we need from our stakeholders and how we will use it
• be willing to change how and when we engage, as relationships evolve
• be inclusive, hearing diverse voices and different perspectives
• value the contribution, time and expertise of our stakeholders
• take time to establish constructive relationships which build mutual trust
• update stakeholders as policy develops and as it is implemented, feeding back to them about how their involvement has shaped our thinking and sharing the outcomes
• use engagement with stakeholders as a vehicle for our own improvement

3.4 UK NSC values

Stakeholder and public involvement are an important part of the commitments made by the UK NSC in its values. These values underpin how the UK NSC conducts its work. They are specific to the work of the UK NSC but accord with the Principles of Public Life, the NHS Values and the Principles for Scientific Advice to Government.

Stakeholder and public engagement is crucial for upholding the values of inclusiveness, transparency and responsiveness in particular.

4. The UK NSC’s stakeholders

The review found that the UK NSC has a wide range of stakeholders that it involves for different purposes and on different topics.

4.1 Topic experts

On particular screening questions, experts in relevant professions and fields can highlight research and share clinical expertise. Experts include screening practitioners, clinicians, nurses, laboratory staff and researchers, and the professional bodies and charities that represent them, both across the UK and abroad.

The input of those with personal experience of a condition is also important, particularly for providing real life context.

The review found that the UK NSC does well at involving experts in its work. The types of stakeholders that most commonly responded to evidence review consultations that took place between 2017 and 2020 were Royal Colleges and professional organisations.

Patient groups and voluntary organisations were the next most frequent respondents. On occasion, large numbers of responses were received from individuals with personal experience of a condition.

However, the review suggests that the UK NSC could do even better at considering the views of people affected by conditions. As often currently happens, this would be done most helpfully through charities and patient groups that can represent and summarise the views of a range of people.

4.2 General public

The review identified a need for input from the general public in order to capture broad societal perspectives on screening questions.

This is an area for improvement. When asked to rate 10 statements about different aspects of the UK NSC’s work, respondents to both the internal and external survey disagreed most strongly with the statement ‘The UK NSC is good at involving members of the public in its work’.

4.3 Policy stakeholders

Further stakeholders were identified that the UK NSC should involve for the purposes of engendering trust and confidence in the organisation. As well as those mentioned already, these include NHS commissioners, government officials and parliamentarians. The UK NSC has strong existing relationships with these stakeholders.

5. Current stakeholder involvement activities

The UK NSC has vastly increased and improved its stakeholder involvement activities over the years and used the information gathered to inform its screening recommendations.

Responses to the internal survey suggested that useful contributions are:

• “[those] which communicate specific clinical or policy concerns and issues”
• “[the] perspective of the affected person and the acceptability of a proposed test to the public”
• “those that identify evidence that has not been considered”
• “practical insights into how new programmes may work”
• “those who offer objective and usable information/data”
• “technical (clinical or methodological) advice on reviews”
• “practical input in modelling exercises”

Less helpful contributions were identified as those:

• “received too late to influence work undertaken and/or discussion of topics”
• “[which are] uninformed”
• “based on grounds not acceptable to all”

One respondent commented: “I think all contributions are useful in some way. However, some are more difficult to deal with than others (for example the patient experience) and don’t fit in with the evidence-based approach we have.”

These responses raise the question of what we mean by ‘evidence’ and how the UK NSC considers and uses evidence. Different kinds of screening questions require different kinds of evidence. For example, patient experiences and reflections are important evidence for a review of the ethical issues raised by a screening programme, whereas scientific studies would be needed to answer questions about test accuracy.

5.1 General activities

The membership of the UK NSC and its subgroups is an opportunity for stakeholders, such as clinicians, researchers and patient and public voice (PPV) representatives to be formally involved. There are 3 very active PPV members on the UK NSC.

The UK NSC website (which has been recently revamped and relaunched) provides a focal point for engagement. For instance, it provides a way for stakeholders to search the UK NSC’s recommendations and see which topics are currently open for consultation, and to find out how to contact the UK NSC through the screening helpdesk.

The website also sets out the evidence review process in detail, how stakeholders can request an early update to a UK NSC recommendation if new evidence emerges, and how to suggest a new screening programme for consideration as part of the annual call.

UK NSC meetings are closed, but stakeholders who have been involved in primary research are sometimes invited to present to UK NSC meetings.

For several years the UK NSC ran an annual one-day stakeholder conference but it stopped this due to waning interest. The current review indicated that this could have been because the conference programmes were too broad and were becoming overly dominated by screening professionals.

In 2020 to 2021, the UK NSC collaborated with other organisations to hold a public dialogue on the implications of whole genome sequencing for newborn screening. This activity explored the views, concerns and aspiration of the general public on a broad range of issues and questions raised by the potential use of genome sequencing technology in newborn screening in future (see box 1).

Box 1. Case study: public dialogue on the implications of whole genome sequencing in newborn screening

In 2020, the UK NSC 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 ensure that public views are considered 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.

A project oversight group included experts in clinical genomics, screening midwifery, genetic counselling, sociology, ethics, and stakeholder engagement, as well as representatives of patient and parenting groups.

In February and March 2021, 133 members of the public, who were broadly reflective of the UK population, took part in a total of 40 virtual dialogue workshops. There were 4 regional groups and 4 smaller groups representing more focused audiences (pregnant women, their partners and new parents; ethnic minority groups; people with and family members of people with genetic conditions; and young adults).

Each participant took part in 5 workshops across several weeks. The workshops involved a mixture of information giving and discussion, stimulated by materials and presentations from experts. There was time between each session for homework tasks and further reflection.

Qualitative analysis methods were used to draw insights from the data and a report of the findings was presented at the UK NSC meeting on 25 June. A virtual public event to showcase and discuss the findings was held in July 2021.

5.2 Activities during and between evidence reviews

When the UK NSC starts reviewing the evidence for a particular screening programme, there are a number of ways that stakeholders can be involved. Stakeholders are often involved throughout the review process (see box 2).

Box 2: Stakeholder involvement in the review of newborn screening for severe combined immunodeficiency (SCID)

Newborn screening for SCID was brought to the attention of the UK NSC through a call for topics. Stakeholders were contacted and asked to provide basic information on the topic they were proposing for consideration. This informed the scope of a rapid review of the evidence on newborn screening for SCID. A rapid review was commissioned, and a consultation on the review’s findings took place in 2012. This attracted more than 200 responses from national organisations, individual professionals and members of the public.

There were attempts to stimulate research to address some of the gaps identified in the review but these failed to secure funding. This led to the UK NSC commissioning a modelling and cost effectiveness evaluation of SCID screening. Modelling combines available data from a variety of sources with clinical opinion to develop an estimate of the impact of screening. It estimated that newborn screening for SCID was likely to be cost effective and the UK NSC recommended an ‘in service evaluation’ of newborn screening for SCID in 2017.

The involvement of stakeholders at each step in this process was proportionate to the activities being undertaken. The modelling project was particularly useful as a more intensive engagement mechanism. It relied on an inclusive approach over a protracted period. It involved several workshops to discuss the design of the model, the outcomes of interest and the input values used to populate the model. Smaller meetings were also held to discuss detailed aspects of the model.

The approach promoted a shared understanding of what screening might achieve. It also positioned the use of clinical opinion within a structured approach with established techniques to consider uncertainty in the model. However, modelling techniques are complex and, combined with the protracted development time, required a significant level of stakeholder commitment. Training of participants might help in future modelling exercises.

Responses from stakeholders to past consultations help set the scope of the next review. Sometimes, workshops with stakeholders are also held to help set the scope of a review, for example, when there is high level of research activity in the area, or if there is interest from a large number of stakeholders (see box 3). For some topics, the UK NSC runs stakeholder workshops later on in the review process to explore the evidence in more detail.

Box 3. Scoping for an evidence review for prostate cancer screening

Potential screening for prostate cancer is a rapidly evolving area and a great deal of research is ongoing to find new screening approaches which can be safer and increase screening efficiency.

In summer 2018, the UK NSC organised a one-day workshop to inform the scope of the next UK NSC evidence review of prostate cancer screening. The workshop enabled the UK NSC to engage with prostate cancer specialists, representatives from a leading prostate cancer charity and experts in prostate cancer research. The workshop featured presentations from experts on the latest research findings, new research developments and ongoing work in the area. The event included a discussion with stakeholders which, crucially, helped to identify the important questions for the UK NSC review.

In early 2019, during the more advanced scoping phase of the evidence review, the UK NSC engaged via email with a variety of experts in the field who helped refine the more specific aspects that the review should cover.

The evidence review was undertaken and a 3-month consultation took place in 2020 which elicited 11 responses. A decision not to recommend screening was published in February 2021.

The UK NSC continues to keep a close eye on modelling work in the area and is organising another workshop in summer 2021 to ensure it keeps abreast of developments. Researchers and charity representatives will have 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.

Consultations

One of the main opportunities for stakeholders to contribute to the UK NSC’s work is when commissioned evidence reviews and evidence maps are published for consultation. Stakeholders are asked for their views on the standard of the evidence review and the review’s conclusions, and to highlight questions or evidence which may have been omitted. Respondents can also provide information not available in the academic literature, such as expert opinion, clinical experience and patient accounts.

Organisations likely to have an interest in the consultation are contacted by email and the consultation is promoted on the UK NSC website and social media. Consultations are open for 3 months. The responses are presented at UK NSC meetings. When the UK NSC makes a recommendation, a summary of the evidence review and how consultation responses have fed in are published on the UK NSC website. Minutes of UK NSC meetings are also published which further clarify how the UK NSC came to its recommendation.

There were 43 UK NSC consultations between February 2017 and February 2020. The median number of stakeholders invited to respond was 13 and the median number of responses was 3.5. The types of stakeholders that most commonly responded were royal colleges, professional organisations and patient/volunteer organisations (see Figure 1).

Most of the responses were unique, rather than repetitive. The majority of the responses (around 70%) were solicited, where the respondent was invited to respond by the UK NSC. Most of the unsolicited responses come from individuals with professional expertise.

On occasion, individual members of the public made large numbers of responses. The large response to the atrial fibrillation consultation (453 responses) prompted a separate agenda item at the UK NSC meeting in June 2019, where a summary of the responses was presented.

Figure 1. Number of different types of stakeholder that responded to UK NSC consultations between Feb 2017 and Feb 2020

Other opportunities for stakeholder engagement

If an evidence review suggests further investigation would be warranted, the UK NSC has a number of options including taking forward cost effectiveness assessments, modelling projects or further rapid reviews. Stakeholders are often involved in these kinds of activities, as the case study on lung cancer screening shows (see box 4). Modelling creates helpful opportunities for clinical opinion in particular to feed into the work of the UK NSC.

Box 4: 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.

Two task and finish groups were formed to help inform this work. A pathways task and finish group was set up involving 30 experts, including clinicians (physicians, surgeons, radiologists, GPs), academic researchers, UK NSC members, PHE officials and representatives of cancer charities and the National Institute for Health Research. The group was tasked with developing a high-level pathway for a lung cancer screening programme to be used to inform discussions regarding which model to use. A consensus was gained, and the ensuing outputs shared with a second task and finish group on modelling.

The modelling group was comprised of experts in modelling, including health economists, researchers and clinicians from the pathways group, UK NSC members and PHE officials. The modelling group was tasked with reviewing the previous cost effectiveness work and identifying important areas to discuss. Drawing on their discussions and the outputs of the pathways group, the researchers at Exeter University developed a proposal on how they would carry out the cost effectiveness modelling. This was also discussed by the modelling group.

The proposal was agreed by the UK NSC in January 2021 and work began. To enable ongoing quality assurance of the modelling, three workshops were set up with all stakeholders for the team from Exeter University to present their work and seek feedback.

This work has seen extensive collaboration and stakeholder engagement to enable wide discussion regarding this highly topical subject. Further workshops are planned to involve further stakeholders, such as NHS England and Improvement and patient representatives, as well as an external consultation.

The UK NSC engages regularly with the research community to inform conversations about gaps in the evidence and the design of research. We have a long-standing relationship with the Health Technology Assessment programme of the National Institute for Health Research, and we have organised meetings between researchers and patient groups to discuss potential research questions. See box 5 on how the UK NSC facilitated discussions about research on an automated retinal image analysis system that has the potential to improve diabetic eye screening.

Box 5. Informing research on diabetic eye screening

Screening for diabetic retinopathy is recommended by the UK NSC. However, the number of people with diabetes continues to increase, putting the workforce under considerable strain.

In 2019, the UK NSC received a proposal to modify the English Diabetic Eye Screening Programme by using an automated retinal image analysis system (ARIAS). In response, the UK NSC evidence team commissioned the University of Exeter to review the evidence on this topic to inform a national UK NSC recommendation. The review concluded that, due to evidence gaps, further research is needed.

In 2020, the UK government dedicated £140 million to accelerating the testing and evaluation of the most promising artificial intelligence technologies. As part of this, a developer of an ARIAS has been awarded funding to test its technology in the diabetic eye screening sites in the UK.

The completion of the UK NSC review and planning of a study by an awarded company created a window of opportunity to hold a workshop with interested parties to discuss options for further research. It is envisaged that this workshop will have several useful outputs for different stakeholders. For ARIAS evaluators, it will provide guidance on a study design. For the UK NSC, the discussion points will be used to produce a guidance document outlining the principles for study design and methodology in the diabetic eye screening context more generally. This exercise is intended to facilitate the production of high-quality evidence that will inform future recommendations of the UK NSC.

The UK NSC has been developing a process for carrying out analyses of ethical issues raised by screening questions. The involvement of people with professional and personal experience is particularly important in ethical analyses, as these are focused on personal and societal values and ethical principles (see box 6).

Box 6. Ethical analysis of child-family cascade screening for familial hypercholesterolemia

The UK NSC conducted a review of the evidence on childhood screening for familial hypercholesterolemia (FH) in 2020 and recommended against introducing a screening programme. The evidence review highlighted that childhood screening for FH raised ethical issues. An analysis of the ethical issues was undertaken to inform the next evidence review and to test out a new ethical analysis process that was being developed by the UK NSC.

A time-limited ethics task group was established to carry out the ethical analysis, which included members of the UK NSC and FMCH and people with personal and professional experience of FH. The group met 4 times and also held meetings with stakeholders, including people with FH and parents of children with FH, healthcare professionals with relevant experience, and ethics and law experts.

The meetings provided important information on the family experience of having a child with FH and helped build a picture of where screening could sit within the context of other strategies for increasing diagnoses of FH. The discussions strongly influenced the eventual report of the ethics task group. The report was also informed by a public dialogue on the implications of whole genome sequencing for newborn screening that took place around the same time (see box 1). The report had further stakeholder input through a peer review process that was undertaken when the report was in a near-final form.

5.3 Feedback from stakeholders

We gathered feedback from stakeholders on how the UK NSC involves stakeholders and the public in its work as part of this internal review.

Many stakeholders saw the UK NSC as an important organisation doing vital work. The rigour of its processes was highly praised and most stakeholders were enthusiastic about getting more involved.

Other feedback suggested that sometimes stakeholders are unclear about how they can get involved, that they feel they have not been listened to, and that there is a lack of transparency in the processes of the UK NSC.

Smaller organisations told us of the difficulties of responding to consultations, with one person saying she took a week off work to understand the evidence review and prepare a response. Support for those wanting to submit responses was requested.

Even though information about how consultation responses have fed into UK NSC recommendations is published, stakeholders said they have often felt in the dark following the end of a consultation. Some stakeholders felt that there was “no information on how [their] submission was used to inform the eventual conclusion” and they thought the draft conclusions of an evidence review were a “done deal”. A common theme from stakeholders was the importance of clear feedback in terms of whether their comments and suggestions were actioned and, if not, why.

The review suggested that the UK NSC could ensure its communications are more inclusive. We heard the UK NSC is “very word-heavy and needs new ways to communicate with people – more visual, more personal too”. There are 6.6 million people in the UK who are dyslexic and 4.2 million speak English as a second language, so it is important for the UK NSC to use different types of communication, such as animations, videos and infographics, to present its findings.

The place of the UK NSC in the overall system of how a screening programme is agreed, piloted and implemented in the NHS was not well understood by most stakeholders. There was also some confusion about the independence of the UK NSC and its relationship with its host organisation (which was PHE from 2013 to 2021). The fact that UK NSC news and information was published through the PHE Screening blog and Twitter channel led to confusion about the relationship. This particularly worried stakeholders from Wales, Scotland and Northern Ireland. Finally, some stakeholders wanted to understand better the different roles of the UK NSC committee and its secretariat.

6. Considerations for the future

The review found that there is a great deal of respect for the UK NSC among stakeholders. Even people who had sometimes disagreed with a recommendation made by the UK NSC felt that it has a vital job to do. This shared sense of wanting the UK NSC to do its job well provides a good foundation for continuing to develop strong working relationships with stakeholders.

The review highlighted the importance of developing ‘critical friends’ – individuals and organisations who, while supporting the overall aims of the UK NSC, can ask difficult questions, provide evidence or data from different perspectives, and ultimately challenge the committee to do better in making and communicating recommendations.

The UK NSC is a small organisation and must retain flexibility in its approaches to stakeholder engagement. It should not become too rigid but continue to involve stakeholders in different ways when appropriate. It is important that the UK NSC is proportionate in its approach, and transparent about when and why there are opportunities for stakeholders to contribute.

The review highlighted a need for the UK NSC to communicate better. Communication should be inclusive, accessible, regular, appropriate and transparent. Many stakeholders disliked jargon and unhelpful terms. For example, although it is no longer used, one stakeholder expressed strong antipathy towards the term ‘rapid review’ as he felt it indicated only cursory consideration by the committee.

Below, we have grouped a number of considerations for the future into themes: setting expectations, building on current activities, developing new approaches, resourcing the activities, and evaluating success.

These considerations are intended to inform discussions about the way in which the UK NSC engages with stakeholders and the public as the organisation enters its next phase. They are made with the 3 main purposes of stakeholder and public involvement in mind:

1. Creating informed, practicable and thoughtful screening recommendations by drawing on expertise, experience and views.
2. Building trust and confidence in the UK NSC through effective consultation, collaboration and communication.
3. Keeping abreast of relevant developments through ongoing engagement with stakeholder networks.

6.1 Setting expectations

The review highlighted the need to be very clear about what the UK NSC does, how it makes recommendations and how stakeholders can contribute to its work. If stakeholders have realistic expectations then they are likely to feel their input throughout the process has been positive and constructive (conversely unrealistic expectations around being able to influence the outcome of a review can lead to disappointment and loss of confidence in the committee).

It is important to have information on the UK NSC website to explain in clear, simple language (ideally including information in other formats such as animations) how the UK NSC makes recommendations and weighs up the pros and cons of screening and, in particular, why screening may not be the right solution for a particular condition.

Some stakeholders felt frustration that gaps in the evidence for a new screening programme often persist from one review to another. They thought it would be helpful if the committee played a more active role in handing over actions to other organisations following the completion of a review, or stimulating conversations about research where there is a realistic prospect that screening would be viable. The UK NSC has already facilitated and contributed to these kinds of conversations (for example, see box 5).

6.2 Building on current activities

Stakeholders told us that they would value more involvement in UK NSC evidence reviews. For example, some expressed a wish to be involved in the early scoping stage of reviews, rather than having to wait for a consultation on an almost-complete review before they were able to contribute. It was thought that co-designing reviews with stakeholders, when appropriate, could elicit greater buy-in and potentially more support for the outcome.

The UK NSC website already has information for stakeholders about responding to consultations. The website presents an opportunity to improve this information and provide simpler, clearer information about the UK NSC’s processes. Stakeholders said they wanted practical help with writing good submissions and example submissions to use as a basis for their own. A further option would be to link up similar stakeholder organisations to support each other in preparing responses.

For some stakeholders, responding to a consultation for an evidence review may not be the best way for them to engage with the UK NSC. Other types of activities, such as the new ethical analysis process which the UK NSC has been piloting (see box 6), could provide a more appropriate forum for some stakeholders to participate in. The range of UK NSC activities that provide opportunities for stakeholder involvement could be made clearer on the website.

The UK NSC already runs ad hoc meetings and workshops with stakeholders as part of evidence reviews, for example where evidence is equivocal and warrants further exploration with relevant experts. When asked in the survey what kinds of activities stakeholders would like to take part in in future, attending workshops to explore specific screening topics was the most popular response. Organising workshops has resource implications, and there are challenges in choosing topics for workshops in a consistent and transparent way. Carrying out more workshops online could help in this regard.

The remit of the UK NSC is being reviewed, which creates an opportunity to look at the membership of the committee and its subgroups. It is important to ensure the membership is diverse in a range of ways, and that a balance is struck between having experienced committee members and new members who bring fresh perspectives.

The recent public dialogue on the implications of whole genome sequencing for newborn screening (see box 1) is an approach that could be considered again in future. Given the resource implications, this kind of activity would only be undertaken for broad or cross-cutting screening questions that raise significant societal and ethical issues.

6.3 Developing new approaches

The review suggested there is scope for the UK NSC to implement new ways of involving and communicating with stakeholders.

The UK NSC website provides an important opportunity to publicise and deliver new communication and engagement approaches. The website can be used to make the UK NSC more accessible, open and transparent, and to show the ‘human face’ of the committee. Some simple changes to the website around wording and terminology would be helpful, as well as a shorter, simpler description of the evidence review process.

The website also presents the opportunity to review the points at which registered stakeholders are emailed by the UK NSC about its activities, for example to provide a progress update on a review and the timescales going forward.

Stakeholders expressed a strong desire to understand more about how the UK NSC reaches its recommendations, for example by having access to meaningful summaries of the end-to-end review process for a screening programme. These documents could explain how the committee used consultation responses and other stakeholder contributions in making its recommendation. We also heard it would be helpful if the UK NSC published case studies highlighting different aspects of its review process, including examples of how consultation responses have influenced UK NSC recommendations.

Stakeholders were enthusiastic about the idea of holding regular webinars on topics such as how to write an effective consultation submission, what is coming up for the UK NSC, and a question and answer session with committee members. Webinars can be recorded, which could be published as a library of video resources.

A newsletter was suggested as a quick and simple way of improving communication with stakeholders and increasing the visibility of the UK NSC. The content could be as simple as a monthly list of current consultations and recent blog articles.

Over half of survey respondents were aware of the PHE Screening blog and had read an article from the UK NSC. Almost all felt that it would be better for the UK NSC to have its own blog. The Government Digital Service approved a new blog for the UK NSC and it launched as part of the new website in May 2021. Depending on the resources required, setting up UK NSC social media channels could also be considered in future.

With support and training, more UK NSC members might be willing and able to take part in opportunities to engage in discussion about the role of the UK NSC and promote its work.

Currently the UK NSC does not publish minutes of its reference group meetings. Stakeholders felt this went against the principle of transparency and said that they would expect these minutes to be published, even if parts had to be redacted.

The review found that the UK NSC could strengthen the involvement of PPV representatives in its work. One option would be to carry out ad hoc PPV activities, such as citizens juries and focus groups, to support the committee in thinking through contested, complex or value laden issues (see box 7 for information on NICE’s public engagement activities).

Box 7. NICE’s public engagement activities

In 2002, the National Institute for Health and Care Excellence (NICE) established a citizens council to ensure the perspective of the public is reflected in its guidance. The citizens council is a panel of 30 members of the public who largely reflect the demographic characteristics of the UK. Members meet once a year for 2 days at a time, when they listen to experts, examine issues and discuss their own views. The members’ views and conclusions are published in a report and presented to the NICE board. Topics covered in the past include the use of anonymised health data, making trade-offs between equity and efficiency, and the use of incentives to improve health. The council last met in 2015 and is soon to be replaced with a new deliberative public engagement initiative, NICE Listens. This new programme will use a range of approaches and techniques to engage with the public on matters of ethics and broad strategic decision making.

6.4 Resourcing the activities

The suggested activities will be more or less resource intensive. The UK NSC receives funding from the 4 UK countries and it will be for them to discuss and agree a set of proposals and associated resources with the UK NSC. The UK NSC is committed to stakeholder engagement, but we need to find approaches that are useful and proportionate and which set out clear expectations.

A stronger stakeholder engagement focus is likely to be part of the development of the new remit of the UK NSC. Resources that it might usefully have in future include:

• an engagement lead, who should be part of the UK NSC secretariat and attend committee meetings
• content design support for the website and social media channels; this needs to include an agreed website managing editor as well as a GOV.UK publishing function
• an engagement support function to provide a single point of contact for the committee, answer queries, provide support for the website and build constructive stakeholder relationships
• media support (which is expected to be facilitated through DHSC press office)

6.5 Evaluating success

Once a work plan and specific objectives are agreed, it will be important for the UK NSC to review its efforts to understand what has been successful in order to continue to change and improve its stakeholder engagement in line with modern techniques and public views.

Evaluation activities might include a short annual survey that sought feedback from stakeholders and asking stakeholders about their experiences following the completion of an evidence review.

These activities could inform a standard section in the UK NSC’s annual report, ideally including case studies highlighting noteworthy engagement activity during the year.