Closed consultation

Scope of bowel cancer screening research prioritisation exercise

Updated 13 February 2019

This prioritisation exercise aims to determine the most important and relevant questions to be considered for future research in the NHS Bowel Cancer Screening Programme (BCSP).

The exercise is being coordinated by members of the NHS BCSP Research Advisory Committee (RAC) in conjunction with Public Health England (PHE).

1. NHS screening programme and research

Data requests and research are integral to the development and improvement of the NHS screening programmes.

Each national screening programme has a RAC that is tasked with guaranteeing research, evaluation and audit is feasible, of high quality and protects the safety of patients.

2. NHS Bowel Cancer Screening Programme Research Advisory Committee

The NHS BCSP RAC is responsible for:

• reviewing the scientific merit and feasibility of research applications and requests for data, and their impact on the screening programme
• determining which research applications will have access to individuals invited as part of the screening programme
• making sure research does not adversely affect the uptake, acceptability or provision of the screening programme

3. Prioritisation exercise

The prioritisation exercise will identify the most important areas of bowel cancer screening research. This is needed because of the large number and diversity of applications received by the NHS BCSP RAC to access screening participants and routinely collected data.

This exercise will involve:

• asking health professionals, healthcare researchers, charitable advocacy groups/organisations and members of the public to submit research questions they believe are important and should be prioritised for future research
• a formal consensus process to refine the list of submitted research questions in an open and transparent manner
• generating a research agenda of the prioritised research questions that will be widely disseminated and will guide the decisions of the NHS BCSP RAC about priorities for future research

The remit for the prioritisation exercise is:

What are the most important research questions the NHS Bowel Cancer Screening Programme Research Advisory Committee should be prioritising for approval in the immediate future?

Proposed research questions which will be considered in the prioritisation exercise will be limited to:

• questions that involve access to individuals invited to the NHS BCSP (including people invited to receive the home screening kit, bowel scope screening or those referred for further tests such as colonoscopy as part of their invitation process)
• questions requesting the use of samples and/or data routinely collected as part of the NHS BCSP

We will not consider:

• questions related to systematic reviews of the literature
• questions concerning increasing public awareness of bowel cancer (not related to direct participation in the NHS BCSP)
• new or existing treatment(s) for bowel cancer (including surgical, chemotherapy, radiation therapy or any combination of these treatment regimens)
• data/samples not routinely collected as part of the NHS BCSP

4. Prioritisation exercise process

The exercise will involve 5 phases:

1. Advertisement. Call advertised through PHE and major charities (Cancer Research UK and Bowel Cancer UK), reminder call and receipt of research questions from health professionals, healthcare researchers, charitable advocacy groups/organisations and members of the public.
2. Collation of responses. Responses to the call will be reviewed by members of the project management team and NHS BCSP RAC who will record and categorise proposed research questions and associated information.
3. Delphi procedure consensus process. A modified Delphi procedure will be used to refine and rank the proposed research questions. A representative panel of health professionals, policy makers, and lay people will be tasked with reviewing research questions and associated information - and providing feedback over 2 Delphi rounds.
4. Consensus workshop. A formal consensus workshop, based on a modified version of the nominal group technique (NGT), will generate the finalised research agenda, which will include ranking specific research questions for importance.
5. Dissemination. A report will be prepared to detail the finalised research agenda (high priority research questions with suggestions for undertaking the research) for the UK National Screening Committee (UK NSC) and PHE. Dissemination of the research agenda will also be through major patient advocacy/charity organisations and the National Institute for Health Research (NIHR).

The process for the exercise is based on the James Lind Alliance (JLA) procedures for priority setting. However, due to time and financial constraints, this exercise will not include the evidence review component normally associated with this procedure.

4.1 Advertisement (Phase 1)

The prioritisation exercise will be advertised through PHE, in conjunction with leading charities Bowel Cancer UK and Cancer Research UK. There is no limit to the number of responses to the call for research questions that can be made by an individual, group or organisation.

The advertisement will direct members of the public and researchers to an online survey asking for details of their suggested research question(s). This form asks people to include:

• contact details of the person submitting the research question
• whether the research question relates to the home test kit, bowel scope screening, colonoscopy or a combination of screening as well as diagnostic modalities
• a well-described research question and a brief explanation of why this question is important
• additional, optional information if applicable

Additional information can include:

• whether a specific research design or methodology would be proposed for evaluating the research question
• whether an intervention related to the research question has been developed or not
• what current or previous evidence is available
• the proposed duration of the study

The survey can be completed by both people with a good understanding of research methodology, and members of the general public who have only a limited understanding.

4.2 Collation of responses (Phase 2)

Response forms will be collated by the project management team, which includes members of the NHS BCSP RAC and PHE.

Collation of responses will involve:

• recording and categorising questions into areas of research (as suggested by the respondents)
• whether or not the research question includes an associated study design
• responses to the optional questions, such as current evidence relating to the research question, and evidence as to whether an intervention has been developed or not

Duplicate research questions will be merged or removed.

Responses which do not include a suggestion for a research design or other optional responses will be included in the recording and categorisation process, in an effort to provide an understanding of the frequency and importance of certain research questions proposed by respondents.

Categories are likely to reflect broad areas of screening or diagnostic modalities with further refinement of the categories based on responses received and discussion during the first round of the Delphi process.

4.3 Delphi panel process (Phase 3)

A modified Delphi approach will be undertaken for refining and ranking the research questions generated by respondents.

The modified Delphi approach is a recommended technique for use in healthcare to gather consensus on a topic without the need for face-to-face meetings.

This approach is often used to find consensus among stakeholders who have differing views and perspectives. It has been used extensively for generating consensus guidelines and the development of research priorities in various areas of healthcare.

The modified Delphi approach was chosen for this exercise as it allows for 2 rounds of ‘remote’ consensus development, followed by a face-to-face meeting (consensus workshop) to allow for detailed discussion to finalise the research priorities.

Delphi panel members will be identified through nomination by stakeholders based on their knowledge, experience and willingness to participate in the prioritisation exercise.

The Delphi panel will consist of people with expertise across a range of disciplines including epidemiology, gastroenterology, primary care, pathology, public health policy, and health psychology.

It will also include people representing patient advocacy/charities and lay representatives (patient and public representatives).

It is expected the Delphi panel will consist of around 30 to 40 members. The first round of the Delphi process is expected to take place in early December, with the second round in January 2019.

Delphi process first round

In the first Delphi round, panel members will receive the summary of the collated responses and a questionnaire which they will be asked to complete and return by a set date.

The questionnaire will provide an overview of the categorisation of responses from phase 2 and the research questions associated with each of the categories.

The first round is primarily aimed at clarifying the suggested research questions and identifying panel members’ perceptions of the overall importance, relevance and potential feasibility of performing the research associated with the research question.

During this round, it is expected that research questions will be refined and the overall number of research questions reduced.

Delphi process second round

In the second Delphi round, panel members will receive a summary of the first round of the process, including an overview of the responses by all panel members to the various research questions.

The summary will indicate:

• which research questions were endorsed by panel members in the first round
• which research questions were either modified or were suggested to be modified
• pertinent comments regarding proposals for potential types of study designs which could be used to evaluate the associated research questions

Panel members will be asked to rank the refined list of research questions based on:

• how novel the question is
• relevance for the NHS
• importance
• feasibility

The draft research priorities list will be presented to participants at the consensus workshop (phase 4).

4.4 Consensus workshop (Phase 4)

The consensus workshop will follow a nominal group technique (NGT) process, which is a well established and documented approach to decision making that takes the views of all participants into account.

NGT is a structured face-to-face group interaction, which gives stakeholders the opportunity to have their voices heard and their opinions considered by other members of the group. This enables a more detailed discussion of the topics before clarification of the research priorities.

Workshop participants will receive the aggregated results for the second round of the Delphi process. Each participant will be asked to individually provide their views and perceptions of the particular research questions and associated research designs/methodologies.

Following a group discussion, participants will then be asked as a group to rank each of the research questions based on the perceived importance, relevance, and feasibility for performing the study in the NHS BCSP.

The scores will then be collated and another group discussion round will determine if participants have any further questions, comments or criticisms about the previous ranking of the research questions.

After the discussion has concluded, a final round of ranking will occur based on the same procedure used in the previous round. This finalised ranking of research questions, with associated research designs/methodologies, will then be reported and disseminated.

4.5 Dissemination (Phase 5)

The final report of the prioritisation exercise will be presented to the UK NSC, PHE Screening and important stakeholders such as Bowel Cancer UK and Cancer Research UK.

The research agenda will also be disseminated to national bodies, including the NIHR (to inform research funding programmes and associated bodies), the National Cancer Research Institute and the Clinical Research Network.

5. Who is involved

The prioritisation exercise is being conducted by members of the NHS BCSP RAC and PHE Screening project management committee. The exercise is also being supported by Bowel Cancer UK which will review pertinent documents and contribute to both the Delphi and nominal group phases of the exercise.

6. Contact information

For more information about the exercise and guidance on completing the survey please email screening.research@phe.gov.uk.