Guidance

UK NSC Research and Methodology Group terms of reference

Published 22 June 2023

1. Aims

The Research and Methodology Group (RMG) will:

• identify research requirements and prioritise research recommendations
• advise on mechanisms and methodologies to carry out and synthesise research on screening and on in-service evaluations
• establish close links with relevant stakeholders, for example funding bodies, researchers, and screening programme teams to ensure that the committee is up to date with screening research in the UK

The group will work in a clear, transparent, timely and consistent manner. It will develop advice for the UK National Screening Committee (UK NSC) to consider and make recommendations based on the best scientific evidence and other evidence available. It will strive to become a reference point on screening research and methodology nationally and internationally.

2. Accountability and reporting arrangements

The RMG is an expert group reporting to the UK NSC. It is one of 3 expert groups that support and provide expert input to the committee.

The RMG will develop an annual work plan in discussion with the UK NSC and other expert groups. The UK NSC will agree the plan and a process for its ongoing development. Items from the RMG work plan may be included in the UK NSC’s strategic work plan and any other forward-looking commitments. In addition, the UK NSC secretariat will work with the RMG chair and other relevant stakeholders to build on and implement the RMG work plan.

The RMG chair and the UK NSC secretariat can escalate issues to the UK NSC and vice versa.

2.1 Quorum arrangements

There are no formal quorum arrangements for the group. However, to ensure transparency and ownership, decisions made at meetings attended by less than 50% of members will be cross-checked with absent members before agreement and actioning.

3. Membership

The group currently has 8 core members. To support its decisions, additional experts from (but not necessarily limited to) the other 2 UK NSC expert groups (the Fetal, Maternal and Child Health (FMCH) and the Adult Reference Group (ARG)) will be invited to join the core RMG when required to provide expertise on specific topics.

Individual members are appointed on the basis of personal expertise, not as representatives of a particular profession, employer or interest group, and have a duty to act in the public interest. Members may also be members of stakeholder groups. Members should make it clear if they are declaring an organisation’s view rather than a personal view.

RMG members are expected to adhere to the UK NSC code of practice and follow the Seven Principles of Public Life set out by the Committee on Standards in Public Life. Suggested core membership expertise is listed in the section on RMG core membership expertise below. Conflicts should be managed as per the UK NSC code of practice.

4. Terms of appointment

4.1 Chair

The chair of the RMG is formally appointed through recruitment by the Department of Health and Social Care (DHSC), which hosts the UK NSC.

The chair is accountable to the UK NSC for carrying out their duties and for their performance.

The chair will be a formal member of the UK NSC and will convey the RMG’s recommendations to the UK NSC. A vice-chair is appointed within the group.

The chair is appointed for a term of 3 years, with a review of appointment at the end of each term. A maximum of 3 terms may be served.

Appointment to RMG is on a voluntary basis.

4.2 Core members

Members are appointed by an open and transparent expressions of interest recruitment process led by the UK NSC secretariat.

Core members serve for a minimum period of 3 years. Members may serve on the group for a maximum of 3 terms (of 3 years). The chairs of the UK NSC and the RMG have the discretion to extend the maximum number of terms.

The appointment of experts to the group will be on a project basis and will last for the duration of each project.

The UK NSC will review the core membership of the RMG at least once every 3 years with a view to maintaining continuity.

4.3 Deputy arrangements

Members are appointed to the RMG based on their personal expertise, and continuity of that expertise is important. Arrangements to send deputies should be avoided if possible and only requested in exceptional circumstances.

4.4 Termination of membership

Members wishing to resign should give 3 months’ notice in writing to the UK NSC secretariat and the RMG chair. If a member is unable to fulfil their commitments for any reason, they should inform the UK NSC secretariat at the earliest opportunity. Membership will be terminated if a member fails to attend 3 consecutive meetings. Membership may be suspended for a period of up to 12 months for the reason of long-term absence from work.

4.5 Observers

External stakeholders, for example research commissioning bodies such as the National Institute for Health and Care Research (NIHR) and representatives of the devolved governments (DGs) may be invited on to the RMG as observers to keep abreast of developments.

Observers are designated representatives who actively help identify and implement innovation in screening with a focus on feasibility and applicability. They are identified because of the position that they hold within their organisation and expertise. They provide a link between the UK NSC and their representative organisations regarding key areas of work.

Observers cannot vote but have access to RMG papers and can contribute to the discussion in RMG meetings. This is not confined to those issues directly affecting an observer’s parent organisation. They must at all times respect and uphold the independence of the RMG when formulating advice to the RMG.

5. Members’ responsibilities

Members are responsible for:

• preparing for meetings by reading papers in advance and forwarding any other business (AOB) agenda items to the secretariat before meetings
• providing expertise and contributions to support relevant initiatives (at and outside of meetings)
• bringing relevant issues to the attention of the group and the UK NSC secretariat
• ensuring discussions are collaborative, constructive, and clear
• providing support to address requests from stakeholders
• contributing to research dissemination activities, for example the annual report or blog articles
• fulfilling assigned actions by the due deadlines
• responding to communications from the secretariat in a timely manner

Additionally, the chair is responsible for:

• reporting to the UK NSC on the work of the RMG
• providing input into meeting agendas
• reviewing and commenting on minutes
• working with the secretariat to develop the RMG’s work plan

5.1 Work outside formal meetings

Because of their specific expertise, some members of the group may be asked to take part in and/or have an advisory role in specific projects which could involve participation in extra meetings.

5.2 Frequency and management of meetings

Meetings can be held virtually or face-to-face. They are closed meetings (not open to the public). Members are expected to attend all meetings; in person if face-to-face, or online if a ‘virtual’ meeting. If a member cannot attend a face-to-face meeting in person, a digital communication option will be made available. Meetings’ attendance and contribution will be subject to annual appraisal by the RMG chair.

The group will meet at least 3 times per year, with this subject to change based on the views of the members.

The secretariat will produce a summary of the proceedings. Meetings will be recorded for minuting purposes only, and the recording will be deleted after the minutes are signed off by the chair.

Draft minutes will be shared for chair’s review, ideally within 20 working days of the meeting. After completion of this review, minutes will be shared with members as ‘draft pending ratification at the next RMG meeting’.

5.3 Handling of meeting papers and development of advice

Unless agreed with the chair and the UK NSC secretariat, papers and other documents should be considered as policy in development and therefore confidential. They should not be shared outside the group.

Meeting papers circulated to the group are classified as ‘closed’ papers where advice is under development and matters under discussion are confidential or of a sensitive nature. All meeting papers must be treated as confidential and not shared more widely.

The RMG complies with the Freedom of Information Act 2000 (FOIA), noting however that certain information may be exempt from disclosure under FOIA 2000.

6. Secretariat responsibilities

The secretariat is responsible for:

• arranging meeting times, locations (if appropriate) and facilities
• maintaining an up to date central list of members and a register of any relevant interests
• circulating the agendas and supporting materials to members a minimum of 7 days (including 5 working days) in advance of meetings
• accurately capturing and tracking actions from the group
• drafting and finalising summaries of minutes with the chair’s input
• managing the group’s documents as per DHSC information management policy
• developing and updating a UK NSC research recommendations database as part of the secretariat’s monitoring and reporting processes
• monitoring developments on ongoing and new research projects through the horizon scanning processes
• establishing and maintaining close links with funding bodies, academic researchers and screening programme teams to ensure the committee is kept up to date with screening research, priorities and barriers
• maintaining close links between the RMG and the UK NSC’s horizon scanning function in order to keep the RMG up to date with national and international research in screening

7. Declaration of interests

Members should declare conflicts of interests annually. Conflicts of interest should also be made known to the chair at the start of each meeting. It is the members’ responsibility to promptly notify the chair and secretariat of any changes to their declaration of interests during their service on the group.

The secretariat will maintain and review a register of members’ relevant interests annually. Information may be disclosed to third parties in accordance with the FOIA 2000 and will be published in registers or minutes that the UK NSC holds, if required.

8. RMG core membership expertise

Suggested core membership should include expertise in:

• health economics
• evidence synthesis
• epidemiology
• clinical trials
• cluster randomised control trials (RCTs) including stepped wedge
• quasi-experimental designs
• test evaluation
• qualitative research
• patient and public voice (PPV)

9. RMG processes

9.1 Introduction

In October 2019, following a number of reviews of screening policy making and practice in England [footnote 1], the Secretary of State for Health announced that the UK NSC remit should be extended to include targeted and stratified screening in addition to population screening [footnote 2].

The CMOs of the 4 UK countries then convened a screening advisory board (SAB) to discuss the future of the UK NSC. The CMOs recommended that a research group reporting to the UK NSC should be formed to identify research requirements and advise on mechanisms and methodologies to carry out research on screening and on in-service evaluations. This addition to the structure of the UK NSC is shown below.

New structure of the UK NSC

It is important to note that the UK NSC was not set up to commission or directly fund research. However, over the years, requests for clear statements of UK NSC evidence requirements have been received. As a result, the UK NSC secretariat has become more closely involved in discussions about research.

The sections below outline the processes used by the RMG and the UK NSC for developing research recommendations (RRs) arising from the regular UK NSC evidence review process and from stakeholder interactions.

9.2 Research recommendation process from the regular UK NSC evidence review process

The RMG needs to ensure that:

• the research recommendations are clearly stated
• the process of developing research recommendations is robust and transparent
• research priorities are identified
• broad methodological guidance/advice is provided
• research recommendations are informed by relevant stakeholders

The process below has been developed through an iterative process between members of the UK NSC evidence team, the secretariat and external stakeholders including experts in research methodology and research in a screening setting, and a research commissioner.

The number and scale of research recommendations will inevitably vary between topics. It is important that stakeholders understand the reasons for this and the process for prioritisation.

The UK NSC research recommendations process starts when a draft evidence product (including research recommendations) is prepared by an independent external supplier (such as a university team or consultancy group). An initial prioritisation of the recommendations is identified by the reviewers.

The evidence review manager (ERM) then sends the evidence product to the relevant UK NSC expert group (FMCH or ARG) for comment.

The reference group then passes the evidence product to the RMG. This ensures the RMG has sight of any reference group feedback indicating issues with the evidence product that may impact on the initial list of RRs. The RMG provides input on RRs and an initial prioritisation of them. The prioritisation process involves a 2-way interaction between the UK NSC and the RMG. Note that FMCH, ARG and RMG can also receive relevant outputs via horizon scanning activity, or from the National Institute of Clinical and Health Excellence (NICE), the Scottish Intercollegiate Guidelines Network (SIGN), or other UK NSC workstreams such as artificial intelligence, blood spot and modelling.

The evidence product (including RRs and initial prioritisation) then progresses through the pathway by either going:

• out for public consultation
• directly to the UK NSC for appraisal

At appraisal, the UK NSC assesses the evidence product and any public consultation responses. RMG members provide relevant methodological advice on screening research issues. The UK NSC also assesses any other relevant product coming from the RMG (such as methodological guidelines). The UK NSC will have an oversight of the most important research questions that need to be answered for the committee to be able to make a recommendation. The UK NSC and RMG will agree a prioritisation of any required research. The UK NSC then makes its recommendations.

The RMG advises how RRs should be addressed, and finalises the research priorities before disseminating them to funding bodies and other stakeholders (research stimulated by the RRs subsequently informs the next evidence review cycle for the condition).

The RMG also flags priority research for horizon scanning. Close links will be in place between the RMG and the horizon scanning function of the UK NSC, keeping the RMG up to date with national and international research in screening.

The interactions between these groups needs to strike a balance between ensuring consistency in the advice that comes from them the UK NSC and avoiding making the process unnecessarily time consuming and bureaucratic.

9.3 Format of research recommendations

Research recommendations should not be too prescriptive. They should be structured as stand-alone higher-level statements that set out the questions that need to be answered, outlining the issue and population of interest.

The RMG work will focus on providing broad methodological guidance and advice for screening studies.

9.4 9.4 Interactions with stakeholders

The UK NSC has a wide range of stakeholders who are impacted by screening policy. These include the general public and topic experts such as professional bodies, clinicians, patient organisations/charities, academics, screening programme teams, industry and other healthcare professionals.

Stakeholder engagement is crucial to the UK NSC’s commitment to be transparent around how it makes recommendations and helps make sure it is held to account for recommendations made.

The UK NSC’s commitment to stakeholder engagement is outlined in the stakeholder engagement strategy. 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 developments through ongoing communication with stakeholder networks

The UK NSC secretariat is responsible for identifying and liaising with relevant stakeholders, for example researchers and research funders, to ensure they are aware of the prioritised RRs and have the opportunity to engage with the RMG. This ensures stakeholders can help inform research priorities at this stage.

To enable effective stakeholder engagement with the RMG, some external stakeholders, for example research commissioning bodies such as NIHR and representatives of the DGs, will be invited to sit on the RMG as observers.

The horizon scanning function of the new UK NSC will include an annual forum for interaction between the UK NSC and the research community. This will provide a further opportunity to actively engage with a broad range of stakeholders to discuss and inform research recommendations.

9.5 Disseminating research recommendations

This will be done via the UK NSC.

9.6 Reviewing status of research on topics before next reviews

When approaching the next evidence review cycle, the status of any research generated by the RRs and the view of the RMG will be considered.

Scanning activity on the prioritised RRs will further inform the decision of the RMG.