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) and Stephanie Ellis (SE).
HRA Attendees
Becky Purvis (BP), Eve Hart (EV), Jonathan Fennelly-Barnwell (JF-B), Kat Evans (KEv), Kate Evans (KE), Matt Westmore (MW), Rachel Hebb (RH), Reshma Raycoba (RR) and Teagan Allen (TA).
Apologies
Eleni Chambers, Emma Marshall, Jane Oakley and Paul Mills.
Item 1 - welcome and introductions
Andrew George, Chair of the Community Committee, welcomed members and noted apologies. Matt Westmore, Chief Executive, Health Research Authority joined to welcome members to the Committee.
AG advised members on how to take part in this meeting:
- to maintain a safe, inclusive environment, we expect everyone to show equal regard for the feelings, wishes, viewpoints, dignity, and rights of others
- we believe that individuals should be treated with respect, and in turn, we should treat others with respect
- raise your hand if you would like to speak
- speak clearly and avoid jargon
- ask if something isn’t clear
- listen to intention and be understanding about language
- make space so we can hear from everyone
- transcription is switched on
- you are welcome to use the chat – we will read out anything so it is part of the discussion and for people who cannot read it
- please raise your hand if you would like to speak so that the Chair can bring you into the discussion
- if you have any difficulties taking part, please let us know in whatever way works best for you
Item 2 - about the HRA and this Committee
MW presented the contents of the circulated slides provided to members.
Excerpt from slide presentation:
'The Health Research Authority (HRA) is an independent arms-length body of the Department of Health and Social Care. We are part of the NHS. We have statutory responsibilities – things we have to do by law – that are set out in the Care Act 2014.
'Our vision is for high quality health and social care research today, which improves everyone’s health and wellbeing tomorrow. We help realise this by making it easy to do research that people can trust.
'Our core purpose is to protect and promote the interests of patients and the public in health and social care research.
'We are one of a number of organisations that work together in the UK to regulate different aspects of health and care research.
'To earn people’s trust, research projects involving people, their tissue or their data need approvals before they can go ahead. We work with people to understand what you want research to look like and acts on this so that you can trust research. We make sure that people taking part in research are treated ethically and fairly, by reviewing and approving health and social care research studies that involve people, their tissue or data before they can start. Champion research transparency, so that you can always see when research is taking place, or the results of that research if it has finished.
'We work with other organisations across the UK to make sure that, wherever you are, research studies can be set up smoothly and are always subject to the same scrutiny before they start. We are one of the gatekeepers of patient data.
'We’re working with the different organisations that researchers need to earn approvals from, to connect the steps and make it easier for researchers to find out what they need to do and make research happen. We’re working to ensure research findings improve care faster because the UK is the easiest place in the world to do research that people can trust.'
Item 3 - about the HRA Community Committee
BP presented the contents of the circulated slides provided to members.
Excerpt from slide presentation:
'We want to ensure that health and social care research is done with and for everyone. Our strategy, ‘Making it easy to do research that people can trust’, sets out our ambitions:
- to make better decisions by working with a diverse group of people with a range of lived experiences.
- to make sure that anyone who wants to get involved in research is able to do so.
'Our Community Committee helps us to do this.
'What we are going to do and why it matters
'Four times a year our Board reviews how well we are doing against targets that have been set, including how quickly we approve the research applications that we review.
'You will be able to review this information and share your thoughts with our Board to inform their assessment of how well we are doing.
'We need your help to tell us how well we are doing what we set out in our strategy to include and accelerate.
'We want to get your insights into policies that we are developing that will shape how we work and get your advice on what matters to our Community to inform our work.
'What we have already put in place
'We will contact you all by email – we know we should keep these as clear and concise as possible, not including multiple asks. Papers will be circulated a week in advance of meetings.
'Meetings will take place on Zoom, with captions enabled. All meeting will have a ten-minute break every hour. We will provide named contacts to support you if you are contacted by members of the public about your role.
'We now want to explore what else we should do to support you to work with us.'
Item 4 - how we will work together session
The Community Committee members were split into three zoom breakout rooms, for 30 minutes, each with an allocated HRA facilitator and notetaker, to discuss the following topics.
What practical things can we do to support you to take part?
The Committee was asked what the Chair and HRA staff should consider when creating a safe space for sharing relevant personal and professional experience which informs the committee’s work:
- help us stay on topic or identify where we may need more time to discuss an issue
- navigate differences of opinion productively
- do you like breakouts to support discussion?
- what else do you need to help you take part?
- how would you like notes of these meetings?
- is there any background information or training that you would like?
Personal information
Members agreed that the HRA should be mindful of what personal information is shared as it may have an impact on others. The HRA must consider and think about the way it is shared publicly.
If the HRA is recording a meeting, do not include personal information in the transcript.
The HRA must consider how the Community Committee presents itself within the HRA and to the outside world. Some members have been selected based on health experiences and some on professional experience. The members agreed that the HRA is accountable for explaining the recruitment selection via the website and that this must be managed appropriately to make sure personal information is not disclosed to the world.
Any information, comment, question etc., disclosed publicly should be attributed to the whole committee rather than one person.
You have given your consent for us to share your personal information with each other when we send out invites to this group. For all additional uses of your personal information, HRA support staff will always contact you before doing anything. We will always ask for your permission before we identify you in any of our communications and we have asked that you do not talk about other members of the Committee publicly without getting their permission. We would like to share information about the Committee and its meetings online so that people can see the work that we are doing. We will do that in line with the above considerations, talking to you throughout so information about you is never shared without your consent.
We have explained in what capacity you are a member of the Community Committee on the webpage introducing you in attempt to relieve you of any pressure to share personal information if you do not wish to.
Trust
The Committee members agreed that it takes time to build up trust. Whilst 1 to 1s within zoom breakout rooms are good for quickly getting to know someone, zoom meetings with a lot of people will take longer. Some Committee members might not be comfortable sharing personal information to start with, this may change for some people as they get to know others, but the HRA need to be mindful that there might not be 100% trust instantly.
The HRA should ensure the meeting agenda is circulated in plenty of time, so that members have the opportunity to flag in advance if something is going to cause stress or anxiety to a member.
The HRA should consider seeking professional support if sensitive issues arise in future meetings, as it is not for HRA to provide that type of support.
Action - The HRA will circulate papers for the meeting at least a week in advance. We will try and do this sooner, but this will not always be possible.
One of the issues that we may ask the Committee to consider in future is the support that the HRA should provide to Community members in the course of their work with us.
Logistics
Members asked that HRA staff always use same tag / title at start of email header to make it easier to search for emails.
Committee members ask the HRA to identify other ways of sharing documents outside of email such as: OneDrive, GoogleDocs, Dropbox, HARP, Microsoft etc., whilst recognising that most platforms may have accessibility barriers for some Committee members.
HRA should consider if there needs to be a separate inbox for people to contact and communicate with the committee and HRA staff.
Committee members ask that the HRA do not make assumptions regarding members availability, HRA to recognise that people are busy. The HRA should circulate meeting dates in advance and book future meetings for the coming year as soon as possible.
Members asked that the HRA considers hosting face-to-face meetings in the future, considering the frequency and location of face-to-face meetings, perhaps 50/50 in a central location. The members agreed that there is real value in meeting this way to gel the group together.
Action - HRA to start the subject line for all Community Committee emails with the words Community Committee to ensure that these are easy to identify.
Action - HRA support staff to schedule 2024 meetings asap and invite Committee members as a matter of priority. We will never assume that you can adjust your diaries around our needs. We will seek to hold these meetings ahead of the HRA Quarterly Strategic Board meetings. We anticipate that there may be challenges in finding dates that work for all members every time and will do what we can to ensure that if you cannot attend a meeting, you are still able to contribute to issues that you would like to.
As the Committee gets up and running and we have a better idea of the information that we will need to make available, together we will explore the best ways of sharing this with you.
Length of meeting
Three hours may be too long for some members, some people may have more energy at the beginning of a meeting, and it may be hard to maintain that energy over a long period of time.
The HRA must be mindful of the scheduling of adequate breaks at meetings. Stick to the allocated times for breaks, do not cancel or shorten breaks to ensure that everyone can participate in the meeting comfortably.
A pre-pandemic world would have been a full day face to face with an hour of introduction, presentations, and time to network so maybe another Zoom meeting is needed, or via email to give time to all these important questions.
Action - continue to explore whether a face-to-face meeting could take place next year. We asked you previously and you have all indicated that you would be interested in a face-to-face meeting going forward and we would like to explore this. However, in exploring this we will need to be mindful of factors including how to ensure that everyone can take part, costs etc. Continue to schedule ten-minute breaks every 50 minutes and stick to these timings during meetings.
Our 19 December meeting is scheduled for three hours (with breaks to be planned within this). This may be too long for some members; however, a shorter meeting might limit how much we can cover. We haven’t yet firmed up the plan for this meeting so please do get in touch if you have thoughts on how we can structure this to ensure it is accessible for you. For example, we could have two 50-minute sessions focused on business and an optional 50-minute session or discussion/where we might hear from other HRA staff etc that could be recorded and watched at a different time.
Zoom chat function
For some members the Zoom chat function is a useful tool to engage and participate in the meeting, to submit questions, comments, and queries and to share links and documents. For others it can be a distraction and deflect attention away from the now, causing people to lose concentration.
Questions and comments can often go unanswered in a busy meeting or missed, or cause confusion. The chat must be controlled to ensure that it has value. The chat transcript should be downloaded and circulated to members after the meeting to ensure that we capture everything.
As a group, we need to find the balance, the equilibrium for all when using chat. We want to use the chat function in a way that is accessible, inclusive, and useful for all.
Action - HRA to develop a chat function etiquette policy for Community Committee meetings that supports everyone to take part in the discussion and for issues raised to considered.
How can HRA staff help us stay on topic or identify where we may need more time to discuss an issue?
Members agree that good chairing is important as is making quick decisions to be flexible around the agenda. The HRA should avoid putting too much on the agenda as it always takes up more time than you think. The HRA should consider putting one topic per agenda if you know it is likely to create a long discussion and roll forward to next meeting or move online if needed.
The questions raised within meetings are important, and we need to find a way to discuss and deal with them. Questions could be answered by email after the meetings.
Action - We will use a Community Committee action tracker to capture questions and issues raised so that we can address them after meetings.
Breakout room discussions
What else do you need to help you take part? How would you like notes of these meetings?
Committee members agreed, that whilst breakout sessions are useful to support discussion, more allocated time is often needed. Historically, some members experiences have tended to show that sessions are too short, and whilst the discussions are very interesting, often the information is not fed back adequately or sufficiently.
The Committee needs to hear the feedback in the present moment to make it worthwhile. Some members recommended that meeting papers are circulated two weeks before the meeting, when possible, to give enough time to read long papers thoroughly.
All minutes or notes should be circulated within one to two weeks of the meeting, while discussions are still fresh in members minds, with sufficient time given to respond before chair sign-off.
Members felt that there were too many questions for the breakout rooms and not enough time scheduled for discussion in this meeting.
Action - HRA to consider discussing one topic only per group for future breakout sessions and ensuring that we have sufficient time to discuss these meaningfully.
How would you like to be kept up to date with our wider work?
The group was asked how they would like to be kept up to date. The HRA use several different ways to tell people what we are doing including:
- HRA Latest – our monthly email newsletter
- Public involvement newsletter
- REC member exchange
- CAG emails to members
The group was asked if they would like opportunities to meet staff or observe meetings, for example, a Research Ethics Committee meeting?
Action - if Committee members would like to observe a REC please get in touch with Reshma Raycoba by emailing reshma.raycoba@hra.nhs.uk
Members need to know what information they absolutely must read and respond to and what they would perhaps like to read and learn more about. There should be a way of filtering this information. Three months in between meetings is a significant gap. Information needs to be fed back in between meetings to ensure members stay up to date and involved. Members are not just here to comment, we must be involved.
Action - HRA to explore how best to keep the Committee updated between meetings, perhaps a brief tailored email update or a short video.
The HRA must consider how we include the Community Committee in matters, without excluding others. Do continue to include and involve members of the community in the work.
Members ask that the HRA circulate an organogram of HRA staff which also includes brief details of roles e.g., Senior Engagement Officer and Public Involvement Officer, as these may seem the same to an external person. A structural diagram of the organisation and people’s roles would be useful.
Action - Circulate an organogram of HRA staff that Committee members will have contact with or are part of the HRA’s senior management including information about their roles and responsibilities.
Members agreed it would be good to receive lots of information to start with and then members can work out what they need as they go along.
If presentations have been sent in advance, then it should be assumed they have been read (maybe create a checklist for people to indicate if they have read). This will save time by not reading the slides again during the meeting. Consider recording presentations in advance and circulate prior to the meetings, to make them more accessible, members can then bring questions to the meeting.
Members ask that the HRA produce and circulate an ‘involvement pack’ for working with the HRA, a useful document we can refer to.
Action - the HRA is currently developing a ‘ways of working’ resource for all Community members to support them in their role. We will be bringing this to the Community Committee’s meeting in December for your views. This resource may address some of these issues raised here and suggest that we reassess what else the Committee members might need after we have reviewed this.
A summary of events and decisions to digest from Executive Committee would be useful. It will be useful to know who to contact about what and when.
Members would like to hear from the HRA Board and from the Heads of different teams within the HRA, with a spotlight on a particular team at each meeting. It would be useful to understand what teams are and are not responsible for.
Action - HRA to arrange for HRA staff to join Community Committee meetings and talk about their work so that the Committee can find out more about the HRA and how it works.
How else would you like to be involved in our work?
There may be activities where we would really like your perspectives in between Community Committee meetings, for example the opportunity to help us make decisions about what we do next year this December.
The group was asked: what should we consider when doing so?
The members agreed that there is a need to observe meetings first, to see how things are discussed and how decisions are made before knowing what would be helpful. There is a difference between observing to learn and observing or engaging for a specific purpose.
There is a need to do a range of observations before working out where members can add value. HRA support staff should check in before and after the observation meeting with members who attend. If possible, agendas for meetings should be shared with the Committee for comment. It is important to circulate a cover sheet for information and a brief for how decisions are made, particularly at HRA Board level.
Action - HRA to consider when Community Committee members perspectives will be valuable and design meetings to involve the Committee. This may include inviting Committee members to observe meetings to help us identify where their involvement is appropriate and a valuable use of their time.
Are you happy for us to come to you with these ‘ad hoc’ opportunities?
Members agreed that reasonable notice must be given for requests. The HRA is also responsible for ensuring that member attendance at meetings is helpful and that members will be making a worthwhile contribution. The HRA must explain why they want members involved, making the benefit clear. The context of the value of attending should be clear before requests are made.
Action - HRA to ask Committee members how they would like to be involved in HRA work to inform the Committee’s ways of working going forward.
The Committee could consider creating a strap line for what we do and develop a framework on how to communicate who we are, what our connections are and how we reach out.
How would you like us to feed back on the difference you are making?
You are generously giving your time to work with us, and it is important for you to see the difference that you are making. We also want to tell people about the work of the Committee.
What do you want to hear about? How would you like to hear about this? We would like to be transparent about the Committee’s work and share information online.
Members agree that feedback is essential, it tells you if you are doing things correctly. It is essential to the development of the Committee.
As individuals, members need to know ‘am I doing the thing I am supposed to be doing’?
Committee members need to know how, as, a collective, we are making a difference. Members need the HRA to be transparent and communicate if participation and contribution has been useful and be honest when it has not been. The HRA also needs to communicate this to wider community and public.
It is a good thing for the public to know what work is being carried out and members can mediate between HRA and communities, not just via official channels, but also utilising social media. The Committee members can be a public face if comfortable to do so. Many people do not know that they can speak to someone at the HRA, but staff are open and willing, this can be better communicated in the future.
Action - HRA to explore producing an annual impact report for Community Committee activities.
Supporting you in your public role
Excerpt from slide presentation:
'We'd love you to talk to friends and family about your role, we're proud that you are a part of our Community Committee, and we hope you're proud too.
'You can talk about your membership of the committee on your own social media pages, but please don't share information from the meetings themselves (such as information about what was discussed, or any of the documents that we share with you) or screenshots from our meetings.
'Please do not identify anyone else that's part of the committee in your personal social media posts. The HRA will always ask for your permission before we identify you in any of our communications.
'It's very unlikely, but not impossible, that a journalist or a campaigner might contact you about your role. This could be in person, by phone or email, or on social media. Please be polite but tell the enquirer that you're not able to speak to them about this and direct them to the HRA. All of our contact details are on the HRA website, this includes an out of hours phone number for people needing a response at weekends or in the evenings. This information is also sent automatically when you email communications@hra.nhs.uk'
Next meeting: Tuesday 19 December 2023, 10am to 1pm (three hours)
Things we would like to discuss with you:
- agreeing the HRA Community Committee Terms of Reference
- the 2024 survey of the HRA Community
- reviewing a new ‘ways of working’ online resource for our Community
- review HRA Strategic Performance Report
- helping us to make decisions about what we do next year
Appendix one - additional Community Committee comments sent in writing out of session
HRA asked to include dial in detail with zoom numbers as standard in email invites.
Action – HRA to include dial in Zoom details as standard in email invite.
HRA is asked to provide printed documents. The HRA is working to reduce our carbon emissions and in line with this we no longer print documents. However, we know there may be times when you may need printed materials and documents. Where you need printed documents to be able to do your committee role, documents can be printed and posted to an address of your choice.
Action - if you need documents printed and sent to you, please contact TA on 0207 104 8092 or at teagan.allen@hra.nhs.uk
HRA asked to consider how best to manage any tensions between those who are digitally literate and those who have minimal IT skills and equipment.
Action – HRA will continue to explore how best to support all members of the Committee to take part. Please contact TA if you experience any challenges so that we can learn from these and work to improve your experiences.
Clarification around sharing of personal information about Committee members on individual personal social media is required. There is concern that this approach may impinge on members personal freedom of expression to make links to other people on social media. It was discussed that this was about ensuring that people felt safe to express their views at Committee meetings and taking a ‘Chatham House Rules’ approach not ascribing views to people.
Action – BP to discuss approach with HRA head of communications for clarity on the intention behind this guidance and what might and might not be appropriate.
It was noted that not everyone enjoys participating in ice breaker tasks, and, that one approach may not fit all and not everyone will feel comfortable with certain exercises. The HRA should be flexible in its approach to such tasks and offer different exercises and approaches to help build trust within the Committee.
We want everyone to enjoy being a part of the Committee, and we want the Committee to make a difference. This means employing a flexible approach to how we work. This could include be scheduling a face-to-face meeting in the future.
Examples of a potential ice breakers for the Committee to use can be found on the Autistic Advocacy and Zendesk websites.
Action – HRA to consider how we increase flexibility to enable all members to participate in ‘ice breaker’ sessions to get to know each other.
AG and BP confirmed that members are free to leave a meeting at any time for a comfort break etc. it is standard procedure that members let us know in the chat function or turn camera off when leaving. Some people find text much easier to engage with than speech.
Action – HRA to circulate text/transcript if circulating updates via video.
HRA was asked how proactive Committee members are expected to be when suggesting what the Committee works and comments on. HRA emphasised that suggestions would be welcome, but in doing so it is important to be aware of the other factors that may inform and shape the work of the HRA. For example, it may not always be possible to focus on work that is not a part of the HRA Business Plan or is not sanctioned by the Department of Health and Social Care (DHSC).
HRA to distinguish clearly between what information and opportunities offered to committee members are a ‘nice to know’ vs a ‘need to know’, which are required to support them in their role. If something is a ‘need to know’ it is vital that members of the public who receive payments for their involvement are paid, and if they will not be offered payment for ‘nice to know’ activities, this must be clear.
Action – HRA to be clear whether information and opportunities offered to committee members are ‘need to know’ or ‘nice to know’ and for members of the public, whether public involvement participation payments will be offered.
Action – clarifying the HRA payments policy for public involvement is on the pipeline of issues that we would like the Committee’s views on.