Community Committee minutes September 2024

Chair

Jan Speechley (JS)

Community Committee Members

Alisha Aman (AA), Anne-Laure Donskoy (A-LD), Christine Vial (CV), Eleni Chambers, Louise Vale (LV), Sandra Duggan (SD), Sarah-Jayne Ambler (S-JA), Simon Kolstoe (SK)

HRA Staff Attendees

Becky Purvis (BP), Eve Hart (EH), Jonathan Fennelly-Barnwell (JF-B), Kat Evans (KE), Paul Mills (PM), Reshma Raycoba (RRa), Teagan Allen (TA - Secretariat)

Apologies

Andrew George (AG)

Welcome and apologies

AJS noted apologies, welcomed the members to the meeting of the Community Committee and introduced HRA staff in attendance.

The Community Committee May Meeting Minutes were ratified.

JS confirmed that we have implemented some member suggestions following our informal coffee meeting in July: changes include circulating papers early once ready, extending breaks in the meetings and scheduling the papers that introduce a topic for discussion at the start of the meeting.

JS confirmed that we will record the presentation at the end of this meeting and circulate to members after the meeting – you are welcome to stay for the session or watch at a later date.

November HRA Board meeting

Our face-to-face meeting with the HRA Board will take place on 20th November, with the seminar starting at 11:00am. We will then attend the public session of the HRA board at 12:30 – 13:35. We will also have rooms available for the rest of the day, after the Board meeting to reconvene and have an informal chat. This will be an opportunity to get to know each better without having a set agenda. You are of course welcome to stay or leave after the Board meeting has finished.

Action – members to let TA know travel and hotel requirements.

Action – members to let TA know of any dietary requirements for face-face November meeting in London.

Item 1 - Public involvement in Research Ethics Committees: Paper 1

BP presented the contents of Paper 1.

Committee members were asked to review and advise on:

Committee members are asked to review and advise on the information presented, in particular:

a) how we can better talk about the distinction between REC membership and public involvement.

b) members agreed that the paper provided much needed information to help explain how the HRA currently operates. RR confirmed that all REC members are considered to be members of the public - the HRA have had legal advice on the payment issue and nature of relationship, which is what has informed the paper.

Members discussed how not offering payment may exclude people including those with a low income.

Members note that there is a wider role for public involvement in other parts of the research process, but from a HRA perspective which has a legal mandate as a regulator, the role of public involvement is in supporting RECs to ensure that wider voices are also heard.

Members noted that whilst there may be a risk of tax implications for paying members of the public, there would be many ways to deal with tax implications if all work for the public was paid, using the self-employed framework. RR clarified that legal advice on the nature of the HRA’s relationship with REC members had informed the paper.

Members discussed how the creation and historical development of the REC service influence the volunteer relationship – RECs have been designed to be independent – recruiting members of the public helps ensure this.

A member noted that the RECs are required to read complex and long documents such as study protocols and as such may not be fully accessible to the public.

The members discussed the difficulties faced by people who want to volunteer – aside of accessibility barriers, time is precious and people who work and have children may not be able to sacrifice time without a payment. RR noted that the HRA has a piece of work that is currently on hold that seeks to encourage employers to release staff to take part in volunteer work. Members noted that it would be challenging for NHS hospitals to release clinical staff due to pressures and capacity but it may not be unreasonable ask to ask them to release a member of their Research and Innovation team.

Members agreed that it is important to advertise REC membership and recruitment in numerous ways beyond word of mouth to be more inclusive.

A member noted that NHS England advertises roles that are paid, and some that are not – the distinction is unclear and asked what specific audiences are the HRA appealing to by not offering payment and vice versa.

Item 2 - Action plan following the HRA Community Survey 2024: Paper 2

BP presented the contents of Paper 2.

Committee members are asked to review the proposed action plan and provide advice, particularly on:

a) the presentation of the report – is the language clear? is there anything that does not make sense? Is there anything missing?

Members were in agreement that paper 2 was unnecessarily long and complex, with key information difficult to identify, noting that the information would be better presented in a table form to be more accessible and clearer. The paper also lacked an executive summary at the start meaning key points were lost. The paper also felt repetitive.

EH confirmed that the HRA will look at ways to help make the final report easier to read while complying with accessibility regulations, which may limit the use of tables.

EH confirmed that the presentation / layout is to meet the accessibility regulation for publication of this content on the HRA website.

EH thanked the Community Committee for their feedback on readability and noted that this had not translated to meeting paper readability. We will explore in future the best format for each purpose rather than presuming one suits all.

Action – HRA will so look at how we best support the Community Committee and look at the regulations and website separately.

Members agreed that the use of a BLUF may help with accessibility. BLUF meaning ‘bottom line up front’ is the practice of beginning a message with its key information (the "bottom line"). This provides the reader with the most important information first.

Action – HRA to provide key information at the front of each paper alongside the summary of paper and key questions.

Members also suggested that the HRA looks at the Civil Service format for ministerial submissions (sometimes called minisubs).

Action – HRA to look at the Civil Service ministerial submissions standards - https://www.civilservant.org.uk/skills-submissions.html

Members ask for alternative ways of presenting ideas to us (presentations, visuals), rather than long papers.

Action – HRA to continue to look at alternative ways of presenting information to the Community Committee.

b) are the proposed actions appropriate? Is there anything else that the HRA should consider doing?

Members noted that lay language should be used for the action plan and political language avoided. Instead of stating ‘continue’ be matter of fact and use key performance indicators (KPIs) where appropriate to demonstrate and measure success. For example, be precise and relevant – i.e. for newsletters – be clear that the HRA have received positive feedback and what has been said when stating ‘keep producing great tailored email newsletters for you’.

Members asked that actions be grouped to together and stated in one place for clarity.

Action – HRA to review the tone and language used in the action plan and the way the action plan is presented.

c) anything that we should consider in sharing this action plan with the HRA Community. Would an online drop-in session be helpful?

Members ask that there is more analysis into the results from different groups of the HRA community where possible – who may be responding in different ways. The current action plan does not differentiate between REC, CAG and the public enough to adequately define individual needs and who requires help etc. for example if ‘81% of you told us that the HRA listens and acts on the issues that you raise’, what about the 19% who do not feel listened to, and that the HRA acts on issues raised . HRA highlighted that this analysis had been conducted where datasets were of a sufficient size to allow significant conclusions to be drawn.

Action – HRA to provide analysis of data from individual groups where possible.

Item 3 - Community Committee Time Survey: Paper 3

Committee members are asked to review and advise on:

a) is the time commitment currently required of Community Committee members appropriate?

It was noted that not all members were aware that public contributors receive a payment for Community Committee meetings and activities and whilst the HRA have been transparent with this, it is felt that this is not equitable and feels uncomfortable and unfair.

Members discussed about the approach to payment being an artefact of the other types of involvement people have with the HRA, but as the Community Committee is a thing in and of itself, and equitable treatment of members - either all members should be paid or all should not be paid, may present a more sensible and defensible position. Being equitable among people conducting identical activities is the most important principle. This is what RECs consider when looking at research recruitment.

Action – We will discuss payments further at our November meeting.

Members agreed that the question around whether the time commitment required to be a committee member is appropriate is connected to the current design of the papers and set up of meetings. Long, complex documents which are not always clear contribute to members having to spent longer digesting content to prepare for meetings. If content is complex, it would be helpful if the HRA could signpost to the relevant information and be more upfront what the ask of members is.

Action – HRA to provide key information at the front of each Committee paper alongside the summary of paper and key questions.

b) discuss the proposed actions that the HRA should take to support Community Committee members and suggest any further actions that the HRA/Committee members should consider.

Members are still experiencing accessibility issues with the NHS Printing Service. Papers were circulated late again due to the Service’s capacity issues – this delay meant members had less time to review the papers. Some papers were also duplicated, and one was missing. HRA are aware that the service is not fit for purpose and are prioritising finding a solution.

Action – HRA to address issues with service provider for print and postage of papers.

Item 4 - For information: REC (Research Ethics Committee) responsibilities when MHRA (Medicines and Healthcare products Regulatory Agency) state a project is not a clinical trial: Paper 4

Members discussed the importance of a holistic view to ensure nothing falls between a gap between regulators i.e. we know that the MHRA consider trial safety, Approvals Specialists review GDPR, therefore the REC is able to focus on other aspects of a review. The Committee asked for clarity over the approach to be taken if RECs are not confident that these checks are in place – what should be done and how do RECs manage review if aspects are not being looked at?

Action – RRa will discuss this issue with operational colleagues and report back to the Committee

Item 5 - HRA 2024-25 Q1 Strategic Performance Reporting: Papers 5a – 5g

Community Committee members received drafts of the HRA’s quarterly strategic reports ahead of HRA Board, to highlight and advise the Board on issues that they thought important. Members also reviewed the REC 2024 Annual Report & CAG 2024 Annual Report.

Community Committee members are asked to review and advise on:

a) how the content is presented – in particular is there anything that is not clear, that it would be helpful to provide more information about etc.

Members agreed that the papers are long and complex and would benefit from a reduction in the number of words used. Language used could also be simplified. Papers also lacked an executive summary at the start meaning key points were lost. The papers also feel repetitive.

BP acknowledged that the HRA have been moving to improve and streamline the formal strategic reporting papers but wants to manage expectations – changing the papers will take time as papers are part of organisational reporting that has a lot of different purposes.

Members noted that the Strategic Risk Update requires clarification. It is unclear whether these risks constitute every risk that the HRA is monitoring, the scoring system is not explained – including who assesses the risk impact and likelihood to inform this. Nor is the use of the arrow to demonstrate trends. Suggestion made to use a traffic light system to improve readability.

Members were concerned there was no risk listed regarding the HRA fulfilling its statutory duties as contained in the Care Act 2014.

Members agreed more information is needed not only of the risk but what HRA is planning to do to manage it - only partial information is provided here.

Action – Community Committee to discuss the HRA Strategic Risk update at its next meeting.

b) share any thoughts and ask any questions about the work of REC/CAG over 2023/24. These can be shared with the HRA Board as they review these reports as part of the Committee’s advisory role.

Members agreed that the documents are text heavy – very complex information makes the paper difficult to read. The figures contained in the documents are hard to digest and it is difficult to understand what the numbers represent.

Members noted that abbreviations are not always fully defined or explained.

RRa confirmed that the REC report to Board is a statutory requirement and the HRA is required to cover specific KPIs. EH confirmed that from a Communications perspective, her team works with Reshma's team to pick out the stories from the report and tell them in a way which everyone can understand.

Item 6 - Presentation: ‘The HRA and its Community Committee’.

We ask you all to watch this session, (passcode on request) at a time that works for you.

Members suggested that in future presentations are not added to the agenda if members will not be able to participate and interact.

Action – Members are asked that if you do have any thoughts or comments when you listen to the presentation, please contact Teagan to share those.

AOB:

TA confirmed that the HRA will utilise the NIHR Learning platform and have created a Community Committee dashboard for members to access. Members will find the ED&I training module here and we will use the platform to upload other