Chair
Andrew George
Community Committee Members
Alisha Aman (AA), Anne-Laure Donskoy (A-LD), Christine Vial (CV), Eleni Chambers, Jan Speechley (JS), Louise Vale (LV), Margaret Cheng (MC), Sandra Duggan (SD), Sarah-Jayne Ambler (S-JA), Simon Kolstoe (SK), Stephanie Ellis (SE)
HRA Attendees
Becky Purvis (BP), Clive Collett (CC), Jacinta Bollard (JB), Jonathan Fennelly-Barnwell (JF-B), Kat Evans (KV), Paul Mills (PM), Reshma Raycoba (RR), Teagan Allen (TA) (Secretariat)
HRA Guest Presenters
Will Griffiths-Stent (WG-S) joined at 10:40am (Item 5)
Janet Messer (JM) joined at 11:05 am for optional breakout session (Item 7)
Nicola Gilzeane (NG) & Damilola Odunlami (DO) joined at 12:30pm (Item 8).
External Attendee
Oliver Excell (OE), PA Consulting, joined at 11:05 am for optional breakout session (Paper 7).
Apologies
Emma Marshall, Eve Hart, Jane Oakley
Item 1 - Welcome and apologies
AG welcomed the members to the meeting of the Community Committee and introduced HRA staff in attendance to observe and the guest speakers. Some members raised concerns about the number of HRA staff in attendance,
HRA staff outnumbered the Community Committee members and some members found that uncomfortable.
AG apologised for recent issues with the NHS Printing Service - the late arrival and failure of delivery of papers. The HRA team are currently looking into alternative options to provide this service in the future. AG noted that the HRA team recognises it can be frustrating when things do not work, and documents are not accessible.
AG thanked the members for their patience and generosity as we get the Community Committee up and running. The HRA team are very conscious that we are asking members to make a greater time commitment than they originally signed up for. AG acknowledged that we need to discuss what workload is appropriate for members going forward and explore other options for the Committee to be successful, we hope to do so at the May meeting.
For approval: 19 December 2023 meeting notes. Members approved the minutes with minor amendments.
Action – TA to amend 19 December 2023 meeting notes.
Item 2 - How we talk about the Committee in a way that everyone can access and understand: for approval
BP presented the contents of Paper 2. Excerpt from Paper 2:
'As a public body, the HRA aims to be transparent about its work and is subject to the Freedom of Information Act, meaning that people have a right to know about our activities, unless there is a good reason for them not to. The Community Committee is intended to increase public involvement in how we make decisions, and we think it is very important for people to be able to find out about the Committee and its work.
We have talked publicly about the establishment of the Committee and there is currently a Community Committee webpage that includes short biographies about its members. We would like to keep this updated with information about the Committee’s activities. We have also had requests to observe the Committee.'
Committee members were asked to approve:
a) What information the HRA publishes about the Community Committee’s meetings
The Community Committee secretariat proposed an approach for the Committee members views:
Excerpt from Paper 2 summarising the proposed approach:
“To publish the agenda and minutes for each Committee meeting on our website. In exceptional circumstances the minutes may be redacted if appropriate.To publish a blog highlighting some of the issues that the Committee has discussed after each meeting. The author could vary - this could be authored by a member of HRA staff, or we could work with a Committee member to author this. This would be reviewed by the Committee Co-Chairs before we publish it. Where appropriate ad hoc content about the Committee’s activities. These would be reviewed by the Committee Co-Chairs before we publish.”
Members advised the HRA to consider the use and terminology of ‘minutes’ and suggested labelling this document as ‘notes’ in the future.
Members agreed that a blog is a good idea for engagement and promoting the Community Committee work publicly and should be included in HRA newsletters, with photos, when possible.
Action – HRA team to use the term 'note of the meeting' when publishing the notes of the Community Committee meetings online.
Members agreed that any minutes/notes/blog must reflect the impact of the decisions that we make, and the impact Community Committee is having on HRA work, and not just be process driven. This impact element is currently missing, and members want to avoid just publishing a list of actions and things to do.
TA noted that the ‘You Said, We Did’ action log tracker is available on request. This tracker is currently available in Microsoft Excel format but can be modified and saved in a different format and platform to ensure accessibility. All Community Committee actions are logged here, and we include timelines and updates within the document.
b) The Community Committee’s approach to observers
The Community Committee secretariat proposed an approach for the Committee members views.
Excerpt from Paper 2 summarising the proposed approach:
'Offer the opportunity for people to observe the Committee. We can provide clear information about what an observer can expect similar to the HRA Board observer guidelines. We would include information about the planned observers in the meeting papers. If Committee members have any concerns, they can raise these with the Committee secretariat ahead of the meeting for appropriate action to be taken. Where a private discussion is needed, we can arrange for part of the meeting to take place in private.'
Members discussed the need to establish themselves as a committee, and to get to know each other before inviting observers to the meetings.
Some members felt it can be difficult to keep track of the conversation when there are additional people in the meeting.
Members expressed concern over the number of non-committee members in attendance at the March meeting. Members agreed that only Community Committee members, guest presenters, AG, BP, and TA should have their cameras on in the meeting.
All observers, including HRA staff, are requested to keep the cameras off, sound to remain on mute and have their name and job title clearly displayed in Zoom. This will help members identify who is in the meeting and who will be contributing to proceedings.
Members discussed the purpose and reasoning behind wanting to observe a Community Committee meeting. Given that it is not a decision-making part of the HRA’s governance, there is no expectation that it should be open to public observers. Therefore, is this out of interest, to contribute, or for training?
Suggestion that the latter two only are appropriate reasons for observers to join the meetings.
Members discussed the value of having external observers. It was felt by some that as the Community Committee is an advisory body, there is not necessary a need for external observer attendance as no decisions are made in the meetings.
It was discussed if it is more important that we are doing the right thing or being seen to do the right thing, with members agreeing it is important that we do the right thing, and that the required engagement follows from this.
Members agreed that if observers do attend in the future, we request that they complete a feedback form after attendance.
Action – if the Committee does agree to external observers, the HRA team will create a mechanism to gather feedback from them.
To help establish the committee to a point where members may feel more comfortable being observed, members asked if a face-to-face meeting will be possible in the future. BP confirmed that this will be dependent on funding available in 2024-25, which is currently being confirmed.
A consensus was not reached in the discussion. AG suggested a poll should be held via email to agree the way forward, with three options:
- No external observers to attend future Community Committee meetings.
- No external observers to attend future Community Committee meetings but we will record the meeting and make the recording available to observers (in line with the process originally suggested in paper 2 and provided below).
- Yes, allow observers to attend Community Committee meetings (in line with the process originally suggested in paper 2 and provided below).
Action – TA to circulate the following poll out of session via email to members asking: Should the Community Committee allow observers?
1) No external observers to attend future Community Committee meetings.
2) No external observers to attend future Community Committee meetings but we will record the meeting and make the recording available to observers (in line with the process originally suggested in paper 2 and provided below).
3) Yes, allow observers to attend Community Committee meetings (in line with the process originally suggested in paper 2 and provided below).
For option 2 and 3 (from paper 2):
We can provide clear information about what an observer can expect similar to the HRA Board observer guidelines. We would include information about the planned observers in the meeting papers. If Committee members have any concerns, they can raise these with the Committee secretariat ahead of the meeting for appropriate action to be taken. Where a private discussion is needed, we can arrange for part of the meeting to take place in private.
Item 3 - How we report to the HRA Board: for approval
The HRA Community Committee has been established to advise the HRA Board. To do that well, the relationship between the Committee and the Board to deliver this advice is important. Previously the Community Insight Group, the predecessor of the Community Committee, had a standing item on the HRA Board agenda.
Committee members were asked to approve:
a) Submitting a formal paper to HRA Board quarterly meetings that follow each Community Committee to provide the Committee’s advice.
b) Attending the HRA Board to speak to the paper.
The Community Committee secretariat proposed an approach for the Committee members views:
Excerpt from Paper 3 summarising the proposed approach:
“The Community Committee submits a formal paper to the HRA Board with its advice. This would contain the Community Committee’s agenda, key decisions and a summary of advice provided in the meeting, including any comments on the HRA’s quarterly strategic reports. For speed because the HRA Board closely follows the Community Committee meetings, this will be reviewed by the Co-Chairs. One Co-Chair of the Committee will be a non-executive member of the HRA Board. We suggest that an additional member of the Community Committee attends the HRA Board meeting to speak to the paper.”
The members were happy and agreed with the HRA proposals.
Action – The Community Committee will submit a formal paper to the HRA Board with its advice. This will contain the Community Committee’s agenda, key decisions and a summary of advice provided in the meeting, including any comments on the HRA’s quarterly strategic reports. For speed because the HRA Board closely follows the Community Committee meetings, this will be reviewed by the Co-Chairs.
Action – One Co-Chair of the Committee will be a non-executive member of the HRA Board. An additional member of the Community Committee will attend the HRA Board meeting virtually or in-person (if appropriate) to speak to the paper. TA to circulate HRA Board dates and confirm member availability to attend the 2024 meetings.
Action – TA to ask members if they would like to write a blog following the meeting. If there is a high demand to do so, we will select at random and/or create a rota so everyone has the opportunity to contribute if they wish to do so.
Item 4 - Agreeing how we will appoint a Co-Chair
Members agreed on 19 December 2023 that the HRA Community Committee should have two Co-Chairs:
- a non-executive member of the HRA Board
- a member of the Community Committee
Committee members were asked to approve:
a) the role and responsibilities of the HRA Community Committee Co-Chair
b) the proposed appointment processes
Members agreed that everyone on the Community Committee has the skills and experience necessary to become the Co-Chair.
There was a discussion about the best approach to appoint a Co-Chair.
Members discussed if a Co-Chair should be appointed randomly or be appointed after a competitive appointment process. It was highlighted that the process must be fair and that choosing at random is one way to help remove bias.
Members discussed the need for the Co-Chair to be appointed based on skills and experience, with members submitting an expression of interest if they wish to be considered for the position.
Some members prefer an expression of interest approach, appointed on basis of experience whilst others suggested the HRA ask members to indicate if interested and choose at random. There was little enthusiasm for an election process. Whilst there was some support for a lottery-type process but also a skills-based one.
Action – TA to circulate a poll out of session via email to members asking: How should we appoint a Community Committee Co-Chair?
1) Fully randomised selection process as proposed in Paper 4. This would allow those approached who did not wish to be co-chair to confidentially decline (process copied below for reference).
2) We will ask for expressions of interest from Committee members and then conduct a randomised selection process from this pool.
3) We will ask Committee members to make an expression of interest listing their skills and experience against a number of criteria. We will score these and appoint the highest scorer.
Item 5 - Strategic performance reporting: for information
Guest: Will Griffiths-Stent, HRA Senior Engagement Manager
In the future the Community Committee will receive drafts of the HRA’s quarterly strategic reports ahead of the HRA Board, giving you the opportunity to highlight and advise the Board on issues that you think are important as they review them.
This concluded our previous training session commenced in December 2023, to support members in their scrutiny of these reports going forward.
The Strategic Engagement Update for HRA Board - September 2023 (Paper was previously circulated in December 2023).
Committee members were asked:
a) Does the report capture HRA work in a clear, concise way?
b) Are there any practical things we can do to amend the report to make it easier, clearer, and more accessible?
Members agreed that the document is a helpful, useful tool but suggested that the HRA team make the following adjustments:
Action – WG-S to consider the members recommendations to inform future Strategic Engagement Update Papers.
Item 6 - HRA Research Systems Programme (RSP): Optional session
Guests: Janet Messer (JM), HRA Director of Approvals Service and Oliver Excell, PA Consulting
The session was recorded and made available for members to watch at a time of their choosing on the HRA private YouTube page.
Members were invited to comment on the content discussed in writing if they wish.
JM hosted a Q and A session after the presentation:
Members commented that the process of renaming IRAS (Integrated Research Approval System) from ‘system’ to ‘services’ sounds complicated – why not use ‘service’ to reflect that all services will be provided in one place.
Members noted that it would be useful for the HRA to demonstrate what work we have done to date, not just highlighting HRA aspiration.
Members advised that the HRA include prompts to ‘complete and share’ research and its findings in the system.
Members also advised that the HRA address ‘how we are going to earn public trust’ within the RSP work.
Members highlighted that the statement ‘The UK great place to do research’ is a hollow phrase and requires expansion and explanation as to how.
Action – HRA team to produce a short paper on why and how the UK is a great place to do research.
Members noted that social care is not yet visible within the RSP work and advised that social care is added to ensure the HRA enables research in different settings.
Action – TA will re-share JM’s ask for members views on what and how frequently we report to the Community Committee on RSP progress and what it has done. Responses will inform how we do this going forward.
Item 7 - Developing the HRA Strategy: for review and advice
Committee members were asked to review and advise on our proposed approach to develop our next HRA strategy, particularly:
Excerpt from Paper 7 summarising the proposed approach:
'At this stage, we would like to talk about the process of developing the strategy, not the content. There will be opportunities to inform the content of the strategy at a later stage of its development.
A general election will take place in the next 12-months, which will have an impact on what the HRA can do publicly as an arms-length-body. As a result, we may have to flex our timings. The following timings are provided as a guide, based on an April 2025 launch.
Discovery phase to inform the development of the new strategy – to May 2024:
- identify who should be involved and how
- identify evidence and analysis that will support the development of the new strategy
- identify policy development that will support the new strategy
- establish an advisory group including external stakeholders and members of the public and HRA staff – establish by June 2024 and run throughout development, launch and follow-up:
The advisory group will review the outputs of the discovery phase and inform how we take this forward. They will be involved throughout the strategy development process, working in partnership with the HRA.
Engagement, involvement, evidence-gathering, and analysis phase – to December 2024:
- create appropriate ways to engage and involve the groups identified.
- conduct evidence-gathering and analysis and policy development.
- draft strategy, review and iterate with different stakeholders, take through appropriate governance processes – to March 2025: Involving external stakeholders and members of the public and advisory group involvement throughout.
- review and advice from Community Group.
- final sign-off by HRA Board
Launch the strategy – April 2025:
- approach will be informed by involvement and engagement and developed in partnership with our advisory group.
- develop a suite of products to publish and promote the strategy.
- design and deliver a launch event appropriate for the HRA’s key stakeholder audiences.
Follow-up and evaluation – April 2026:
- conduct follow-up sessions with the advisory group and evaluate success to capture learning for the future.'
Members asked if the HRA intends to help shape the strategy with the community – ‘doing’ as opposed to be seen to be doing – they asked whether the community really the freedom have to help develop a strategy.
BP clarified that the Community informing the strategy is not at odds with delivering the statutory responsibilities of the HRA – the Care Act 2014 lays out the functions of the HRA but the HRA as a public body must develop a strategy setting out how it will achieve those functions.
Members noted that there needs to be clear metrics to demonstrate the impact of a strategy, asking how the HRA intends to measure impact and success of a strategy in the future.
Members agreed that it would be beneficial for the Community Committee to understand, as a starting point, lessons learned from the current strategy, what was achieved, what was not achieved, what the HRA did and did not do, what if any work needs to be carried over and what if any gaps need to be bridged.
BP clarified that this work would form part of the discovery phase of the strategy development.
Members suggested that as part of the discovery phase, HRA staff should contact and work with community leaders in community groups to reach as much of the public as possible. The Committee agreed to discuss this further under item 8.
Members asked if it is possible to include social care within the Health Research Authority organisation title. BP clarified that the name of the HRA is stipulated within the Care Act 2014, however members acknowledged that other bodies have changed their names to reflect social care and social care research and queried if there is scope for the HRA to explore this.
Members noted that one of the most essential elements of developing a strategy is identifying who should be involved and how as soon as possible. The HRA must be as inclusive as possible from the outset. Inclusion and diversity are crucial. The HRA needs to do things differently – whilst it is possible to rely on established ways of communicating and engaging, the HRA must be radical in the way that it engages to involve different people.
Members highlighted the importance of involving Research Ethics Committee members as part of the HRA Community throughout the strategy development and that the new strategy must support the ongoing development of the RECs (Research Ethic Committees) as a central function of the HRA.
Item 8 - Community Engagement: for review and advice
Guests: Nicola Gilzeane (NG), HRA Engagement Manager and Damilola Odunlami (DO), HRA Public Involvement Manager.
NG and DO shared an overview of the objectives and our proposed approach to this work, informed by our findings to date for members review and advice:
Excerpt from Paper 8 summarising the proposed approach:
“To make it easy to do research people can trust we need to ensure research is done with and for everyone. We know that right now we are not reaching everyone. Under the Include pillar of our strategy we committed to listen to and involve a diverse group of people in our work.
Levels of trust and willingness to take part in research vary between different groups, as shown in our recent YouGov public attitudes survey. We want to understand what factors impact on trust and why/how that differs, to identify what we can do differently to increase our reach and diversify our network.
Feedback received from public contributors following the launch of the strategy recommended that to deliver on this aim we should build relationships with ten new community groups, prioritising those that have lower levels of trust in research and are currently underserved in research.
We want to gain input from communities that we have previously had limited engagement with, and those who are less trusting of health research more broadly. What we learn from this work will be used to increase awareness and trust of the HRA.
Outputs
Examples of best practice on how to engage with communities, including frequency, timing, and methods of contact.
A clear overview of the research issues and priorities for these groups, which may differ from our current areas of focus or what we have previously thought to be important.
Guidance for communications, based on insights on barriers that could impact all communities’ desire/ability to work with us and what are specific barriers unique to some communities.
Materials that can clearly and effectively explain who we are and what we do to new audiences.
Outcomes (the change that will be delivered or supported)
Support colleagues to better engage with new groups and audiences from the outset of their work.
Make us accountable to the communities we have partnered and worked with, to deliver improvements.
Make improvements in how we encourage new people to get involved in our work and join our REC, CAG and PIN community.
Support our strategic priorities for 2025 and beyond to be more open and accessible.
Grow our insight and improve how we uncover and challenge barriers to research for under-served communities (created by ourselves and elsewhere in the system).
This type of engagement is new for the HRA, and so we have spent time learning from our partners who are already working with communities to ensure our approach is considered.
Data from our YouGov public perceptions of research survey from May 2023 provides insights from a representative sample of over 5,000 UK adults.
Demographic differences in responses to relevant survey questions allowed us to identify the following groups who reported lower levels of trust in research:
- religion - Sikh and Muslim
- ethnicity – black
- social- lower education and lower social grade
- gender – males
NG confirmed that this is not an exhaustive list and can change.
From our desk research, we should prioritise quality over quantity and so we acknowledge that we may not be able to build relationships with the ten groups that was recommended within a year. We are seeking to secure funds to support this work over the next year.”
Members acknowledged the importance of this work within the HRA’s Shared Commitment policy and within the include pillar of the strategy.
Members were supportive of the need to do the work but advised that the HRA team be realistic about the amount of effort the engagement work will require and the need for the team be flexible with the timescale and the number of groups that we will be able to facilitate this work with.
Members advised that NG & DO consider the cost of the potential need for interpreters in the budget. The HRA team must also ensure that any documents and materials circulated for review can be made available in multiple different languages when required.
Members asked that the use of the term ‘barriers’ is considered when talking about this engagement work, and that the HRA team should utilise more positive language, for example: ‘what would help make engagement easier for you,’ ‘which parts of the system do you trust.’
Members agreed that the HRA team must be mindful and realistic with this work: this level of engagement will not be easy. A year is a short amount of time to achieve all the objectives and outcomes, and this may not be possible. Members advised that the HRA should reduce the number of groups that they intend to reach out to (target of 10). This will ensure that the work remains manageable and successful.
Members advised that the HRA contact umbrella groups and be flexible with schedules, for example: groups will often meet outside of the standard 9am – 5pm working day and may only be available to engage in the evenings and at weekends. The HRA must consider the logistics of engaging with groups to ensure the work is accessible and beneficial for all.
Members advised that the HRA team consider reaching out to groups for young people, people with disability/long term conditions and the Devolved Nations if possible. The mediums used when you contact such groups need to be considered – i.e. accessible documents, potential use of apps/games.
Members advised that when talking about strategy and its strategic objectives, which guide this work, the HRA makes a clear link back to the purpose of the HRA as set out in the Care Act 2014:
(1) The main functions of the HRA are:
(a) functions relating to the co-ordination and standardisation of practice relating to the regulation of health and social care research (see section 111):
(b) functions relating to research ethics committees (see sections 112 to 115)
(c) functions as a member of the United Kingdom Ethics Committee Authority (see section 116).
(2) The main objective of the HRA in exercising its functions is —
(a) to protect participants and potential participants in health or social care research and the general public by encouraging research that is safe and ethical, and
(b) to promote the interests of those participants and potential participants and the general public by facilitating the conduct of research that is safe and ethical”.
Members highlighted that the primary objective for this work should be more inclusive membership of groups like REC and CAG and it would be helpful if this were made clearer.
Members agreed that from experience, making it clear that the engagement is about long term and genuine commitment, and interest is key to earning trust. Often, many communities and groups can feel used if there is no follow up or conclusion to the engagement.
Members noted that the paper references ‘community groups’ and advised that we be aware of the limitations of engaging only with Community Groups given that approximately 80% of people in the country are not a member of any group.
Item 9 - Agenda items proposed by Community Committee members: for information
Two members have proposed issues for the Community Committee’s future agenda.
BP confirmed that for each issue, HRA staff will work with the Committee member who submitted the agenda item to develop a paper.
- REC members using Artificial Intelligence (AI) to review applications:
REC members review a large quantity of information. AI tools are now freely available that can rapidly synthesise large quantities of information and REC members may consider using these to support them in their review. This raises questions over whether this is appropriate – including accuracy, security of information etc.
Action – HRA staff to prepare an overview of current HRA approach to the use of AI to review applications and work in progress to inform a paper for review and advice.
- Public involvement in Research Ethics Committees:
The HRA is working to increase public involvement in research, including leading with NIHR the shared commitment to public involvement, which requires all signatories to make commitments to increase public involvement.
We have received questions from members of the public about public involvement in Research Ethics Committees, including:
a) members of the public joining Research Ethics Committees
b) Research Ethics Committees’ scrutiny of public involvement in the applications that they receive.
Action – HRA staff to prepare an overview of the current approach to inform a paper for the Community Committee to review and provide advice.
Item 10 - AOB
There was no AOB.
Our next meeting is scheduled for: Friday 3 May 2024 from 10:00am to 1pm (3 hours) on Zoom.
At our next meeting we would like to get your views on:
- Agreeing Community Committee Terms of Reference
- How we enforce standards to earn people’s trust in research