Chair:
Andrew George (AG) and Jan Speechley
Community Committee Members:
Alisha Aman (AA), Anne-Laure Donskoy (A-LD), Eleni Chambers (EC), Louise Vale (LV), Margaret Cheng (MC), Sandra Duggan (SD), Stephanie Ellis (SE),
HRA Staff Attendees:
Becky Purvis (BP), Ben Solley (BS), Kat Evans (KE) Louise Braley (LB), Rachel Hebb (RH), Teagan Allen (TA) Tamsin Destrube (TD), Steve Tebbutt (TB), Matt Balding (MB)
HRA Guest Presenters:
Matt Balding (MB) for agenda item 3
Steve Tebbutt (ST) for agenda items 4 and 5
Apologies:
Eve Hart (EH), Jonathan Fennelly-Barnwell (JF-B), Paul Mills (PM), Christine Vial (CV), Sarah-Jayne Ambler (S-JA), Simon Kolstoe (SK)
Welcome and apologies:
JS noted apologies, welcomed the members to the meeting of the Community Committee and introduced HRA staff in attendance. She updated on the format of the meeting which included an optional session in the middle of the meeting, recorded for members that require a longer break.
The Community Committee 8 November Meeting Minutes (Paper B) were ratified.
Verbal updates:
- achievements:
- 20 November HRA Board and Seminar
BP updated on the HRA Board and Community seminar which took place with some members attending in person and others online. Noted that there was a good discussion about how to work with the Board and a suggestion to trial a process where the Board puts forward a question to the Community which we are planning to take forward.
- update on payments to HRA Community
BP gave an update on the work around how payments are offered to the HRA community and the situation highlighted by this Committee whereby public contributors are offered payment for public involvement, but this is not offered to REC and CAG members. Legal advice has been sought. Unfortunately, this is taking longer than expected. We hope to have an update on the progress of this work in time for the meeting on 12 May.
- update on handling of high-profile research studies
BS gave an update on the Pathway programme, which is a series of studies funded by the NIHR, that aim to test how the NHS can best support people with gender dysphoria. This is being flagged to the Committee as there has been some recent media coverage and the study is receiving a lot of scrutiny. The HRA is expecting to receive an application for this research. A letter has also been received from a solicitor on behalf of 2 complainants who are threatening legal action against HRA if a research trial is approved.
This is all being handled under the normal process of receiving complaints and feedback ahead of an ethical review. The HRA is supporting staff and HRA community members. If Community Committee members are approached about this study, it is asked that the contact the HRA Communications team.
It was asked if a link should be circulated so that members know how to respond if they are asked questions.
- action - BS will share the link and it will be circulated to members by email. (RH)
- plans for recruitment to Community Committee in 2025, including request for members to join recruitment working group
- see Paper C - For information - Community Committee Member Recruitment Paper
TA gave an overview of the paper, previously circulated to members.
The aim is to recruit 4 new members to make 15 in total, as per the Committee Terms of Reference. A working group will be formed, which will include 1 REC member and 1 public contributor to work with HRA staff. It will include reviewing the advert, how and where we advertise, looking at shortlisting and interviews. There will be 4 meetings between April to June and interviews will take place in October. JS has agreed to sit on the interview panel. Please send registrations of interest to Rachel Hebb (rachel.hebb@hra.nhs.uk).
As part of this work, the group will look at the process of how we ask and select Community members to volunteer for additional work.
The following feedback was received from members:
- a member questioned the decision to recruit at this time when there have been a number of negative comments on this. This has been highlighted in the Effectiveness Survey
- a member asked if there would be work done with the current committee. It was noted that there are issues that may need resolving to inform recruitment of new members – for example the support the HRA can offer to members – as well as establishing effective ways of working
BP said that the Committee is not currently at full membership, and they would like to bring the balance up to the levels set out in the Terms of Reference and get additional perspectives from a bigger group.
TA noted that new members would potentially join the Committee in November, following interview week commencing 06 October, so there is plenty of time to work together before they join.
- upcoming changes to Committee co-chairs
JS confirmed that AG will be leaving the Committee as his term as a HRA Non-Executive Director comes to an end. This is his last meeting. The new co-chair is Marian Knight who will be joining the meeting at 12:45pm to introduce herself. Marian will co-chair all future meetings.
Item 2
For review and advice: Paper 1a - ‘Update on progress developing the next HRA strategy and opportunity to comment on emerging content’
Excerpt from Paper 1a
“We last updated the Committee on progress in November, during the discovery phase. This completed at the end of the 2024 and we are now developing and iterating the content of the strategy.
Today we are sharing with you an overview of the emerging top-down structure. Work is underway in parallel to populate the detail that sits beneath this using a driver-based approach (diagram below also provided in accompanying slides).
In the time between these papers being circulated and our discussion on 10 March, a two-day HRA executive committee exercise will have taken place to begin to populate these drivers. We hope to be able to share further information on 10 March.”
Noted that the references to health inequalities in the strategic objectives should be broadened to reflect health and social care inequalities.
A suggestion was put forward to change ‘trusted’ to ‘trustworthy’.
BP said it would be very helpful to capture comments around the language but notes that there will be a writing group later in the process who will focus on the language and wording.
BP was asked about the scope of the HRA’s remit, clarifying that accountability for how research funding is spent sits with the funder.
Members were randomly allocated to 3 breakout rooms, each with a HRA facilitator and notetaker.
Break-out rooms discussion summary:
- are these the correct strategic objectives?
- is there anything that we should consider as we start to populate the secondary drivers that will support the four primary drivers – simpler, faster, trusted, effective
- is there anything missing?
Summarised feedback from breakout groups:
- attracting people to do research in the UK is difficult to do due to visa and immigration rules. This is a barrier and needs to be reflected. However, this is a broader problem, including legalities around visas etc and how much can HRA influence?
- language – don’t use the word ‘simpler’ as it can be insulting. Suggest ‘easier’
- some research findings aren’t good. So not everyone will benefit. Needs to be rephrased about the potential. Research findings come first and benefits at the end
- discussed if increasing the money impacts or demonstrating the impact? Agreed it’s demonstrating the impact and value for money. Flip the sentence around. Is streamlined and efficient the same thing?
- sustainability of the people, how well we look after them
- needs to be clear this is not about cutting corners in research: there are significant financial constraints in the academic sector and contracts are often short term – a lack of care may exist due to having no choice – how can we help manage this
- it is hard to reconcile the first aim within the national context – short term contracts and redundancies have become the norm and this is concerning
- we cannot have economic growth at the cost of ethics
- we need to be honest – there are negative results from many studies, this is important to note and highlight too to help conduct relevant research in the future. It has to be the norm – its ok to let the public know about both positive and negative study results
- whilst we understand that we need to help make the UK an attractive place to conduct research – is there too much of a focus on life sciences – are we in danger of leaving the other sectors behind
- life sciences is not well defined
- the commitments don’t recognise the diversity of research that we see. Life sciences, speed etc – are right and important for clinical trials. Help Britain do well, develop drugs, solutions but social care – completely different concept
- speeding up process may not be realistic. Need a proper review that helps to guide them. It’s about treating people well. It’s a tricky thing to do. Talking to beginner members, particularly lay people. They have a fear of clinical trials. Don’t like the look of them. But 90% of them are easy. The only core problem is the information sheet. Need to keep it short and write it in plain language. I chair a SC committee. Most research all over the place. Unravel what researcher thinks they are doing. Help research community to understand. How to do research. And how to apply to us, how to write application. That research is just as important as clinical trials. But it’s a different world. Needs a lot more discussion
- 2nd driver - not clear, the language is not very patient, public friendly. People get turned off when faced with language such as ‘strategic targets’, ‘drivers’ etc. Could we produce a version more patient and public friendly?
- change ‘trusted’ to ‘trustworthy’
- how we deal with AI used in research and used in how to review research. The quality of the data is important in how effective it is
- reference to economy is good. But also need include reference to people living a better life. Good to align with government. But not 100%. Not lapdogs
- go back to government priorities. Broadening opportunities also referenced. Need to look at research workforce. And public involvement in research. May be secondary to other two government priorities but it is part of what we are trying to do. Objective two – broadening representation and increasing inclusion. Are not referenced in the primary drivers at the bottom of the page – needs to go under trusted
- the global political crisis is a risk in the external environment. The US research sector is currently being decimated by cuts. HRA's funding and research funding may be at risk if the UK government's priorities change. (thinking of the recent raid on the overseas aid budget to increase defence spending.)
- it’s not visible at this strategic level but there is a project around use of AI, led by Jonathan Fennelly-Barnwell. And again, not in this document but we have flagged the changing political climate as a risk. Testing our diversity and inclusion guidance
- responding to disinformation should be included under the trusted / trustworthy box.
- not only about how research is done in the UK but the outward going part around awareness. Secondary driver
- could re-read the strategy in two years’ time and it could look dated. Align to government. But independent. Not too aligned
Paper 1b – HRA Strategy – supporting slides
Item 3
Optional session HRA Board strategic supporting papers – for review and advice: Paper 2a – 2024-25 Q3 Finance Report & Estates
Guest: Matt Balding, HRA Deputy Director of Finance & Estates
MB talked through the report that had been circulated to members. The following comments were raised:
- a member raised a question around savings being made across the financial year and whether the money be kept or has to be returned and start again at the beginning of a new financial year?
- a member highlighted the figure of 95% of invoices paid within the timeframe, which they said was impressive and that the HRA is one of the best organisations for payments. They asked if that also covered public involvement payments as well?
MB confirmed that budgets are reset on 1 April and surplus money can’t be carried forward. There is some leeway around the Research Systems Programme where the spend may be later than expected and this is discussed and agreed with DHSC to come to an arrangement.
MB said that public involvement payments weren’t included in the 95%. It covers suppliers. Public involvement payments are included in the Board report, as a result of feedback from this committee.
As part of month end close there is a regular review of debtors and creditors and the aged debt isn’t big. Can give assurance that public involvement payments are completed promptly.
Item 4
Optional session – for review and advice: Paper 3 – Vexatious complaints policy
Guest: Stephen Tebbutt, HRA Company Secretary
Excerpt from paper 3
“The HRA has a role to protect and promote the interests of patients and the public in health and social care research and is committed to providing a service in a professional, fair and courteous manner. We encourage users of our service to let us know when our service does not meet their expectations. We also receive complaints about third parties relating to research approved or requiring approval by the HRA.
We handle complaints relating to third parties in line with our remit under the Care Act 2014 and the responsibilities as set out in the UK Policy Framework for Health and Social Care Research. We might not always be able to investigate or take action in the way an individual may want.
Sometimes we receive complaints which can themselves be described as vexatious, or which by the nature of further contact can be deemed vexatious or unreasonably persistent. Handling these complaints can take up a disproportionate amount of our time and resources and can affect our ability to provide a service to others”.
Committee members were asked to review and advise on whether the policy is clear. In particular are there any aspects which may seem unreasonable to a member of the public whose behaviour could be challenging for a variety of reasons?
Members discussed the draft policy and comments are summarised below:
- a member expressed concern that vexatious behaviour is being defined as evidence about recording conversations without consent and that assumptions are made that it makes someone vexatious. This happens frequently without people being aware and they felt that shouldn’t be part of the definition of vexatious behaviour
- the HRA should consider that there is a fine line between people who are hurt and upset and then finding they are stonewalled because the organisation has decided enough is enough. The HRA has a duty of care to the individual as well as to HRA staff
- it was felt that ‘vexatious’ it is a strong word / not pleasant and that it is a legal term which not everyone will have heard of it, therefore the HRA might consider a different term
- a member asked about the alignment of the complaint with the policy and if the affected person would know at what point it become vexatious? Having procedures in place and maybe a flowchart to show where the complaint becomes an issue may help
- incidents can escalate and people get caught up in the process so training for HRA staff is important to know how to respond to early signs that someone is uncomfortable
- it would be helpful to take learning from instances where someone has been labelled as vexatious
- recognising the types of vexatious complaints is important. Some are around high-risk studies and will attract a lot of comments, others may become more ‘political’. It would be valuable to think through how to deal with these different types of complaints.
- there may be value in sharing abstract, but true, case studies of how and what’s been done to resolve situations?
ST confirmed he would take the above comments on board when finalising the policy. He agreed to look at the language used, and that a flow chart would be useful.
Item 5
For review and advice: Paper 4 - Community Committee effectiveness survey report 2024
Excerpt from paper 4
“The Community Committee is a sub-committee of the HRA Board. As part of governance best practice, sub-committees of a Board should regularly review their own effectiveness to gain valuable insight and support discussions on how they can be most effective. This is why we would like to do an annual review of the effectiveness of the Community Committee.
The effectiveness review will help us to identify the strengths of the Community Committee, uncovering areas for improvement, and supporting the Community Committee in its development. This will give us a foundation to build on and improve throughout 2025.
The Government Internal Audit Agency (GIAA) recommends that the effectiveness of the Community Committee should be reviewed at the end of each meeting and on an annual basis. In the future we will ask for feedback at the end of each meeting. We will also conduct an annual effectiveness survey. Questions were developed by HRA staff, informed by Community Committee member feedback”.
Members reviewed a paper setting out the findings of the Community Committee effectiveness survey report 2024 and some proposed actions. The Committee split into three breakout groups to discuss the following questions:
- do you have any thoughts about the findings of the survey?
- we have proposed some actions, informed by the findings of the survey:
- are these the correct actions? Will they address the issues raised by the survey findings?
- do you have any thoughts about how we can do these well/differently to best address the issues raised?
- are there any other areas highlighted by the survey findings where it would be helpful for us to do things differently?
- we plan to publish the final report and our agreed actions. This draft currently includes quotes taken from the comments that you provided. Are you comfortable for these to be included in the final published report?
Members were randomly allocated to 3 break-out rooms, each with an HRA facilitator and note taker.
The findings and draft report were discussed.
Themes raised included:
- concern over fundamental differences of approach within the group - with a range of views over whether these could be overcome and approaches to doing so
- concern over the sharing of anonymous comments within the report, noting that some of these were challenging and highlighting the negative impact that these had on those reading them in the way that they were shared. Some discussion also of the value of making these visible
- noting that the data shows that the majority of the committee are aligned.
- noting that we are already aware of the issues highlighted, which reflects good communication within the group
- noting the need for respect of each other
- recognition that some things are working well and that members share a wish to make this work
- a steer that the actions need further thought. It may be helpful to consider an external facilitator
Item 6
For review and advice: Paper 5 – Working with adults at risk and children policy and procedure
Excerpt from paper 5
“The core purpose of the HRA is to protect and promote the interests of patients and the public in health and social care research. We are committed to the safety and welfare of all those who use our services or engage with us.
The HRA recognises that all children and some adults are at risk of harm. We want them to be safe when they use our services or engage with us, and to feel they can trust us.
The HRA, its staff and volunteers interact with a range of individuals on a daily basis and, whilst uncommon, it may be possible that a HRA staff member or volunteer may find themselves in a situation with an individual who is at risk or there are concerns regarding their safety. We want all our staff, committee members, and public involvement network members to be able to identify safeguarding concerns and take the right action.
This policy reflects our commitment to safeguarding everyone we interact with, ensuring that all children and adults at risk feel safe and supported. Any form of abuse or neglect is unacceptable and the safeguarding of children and adults who are at risk of harm is a fundamental obligation for everyone who works at the HRA, as a staff member, committee member, or a member of our public involvement network.
The work of the HRA can impact upon everyone who takes part in and benefits from research. The HRA has a duty therefore to listen and learn from children and adults at risk and use this learning to further inform this policy.
The term ‘adult at risk’ is used in this policy rather than ‘vulnerable adult’. This is because the term ‘vulnerable adult’ may wrongly imply that some of the fault for the abuse lies with the victim of abuse.”
Committee members were asked to review and advise on whether the policy is clear and to consider whether there are any aspects which are unclear or unhelpful. Members discussed the draft policy and comments are summarised below:
- members felt it was a comprehensive policy and were pleased to see that the most recent version of the care act has been adopted. There are a few instances where ‘vulnerable’ is still being used and these should be removed completely throughout the document and title
- a glossary of terms and visual aid/outline skeleton would be helpful to navigate the amount of text
- an easy read or shortened format to be publicly available alongside the full document would be beneficial
- members asked how people would know about the policy?
- there was a suggestion to test out the policy with staff, potentially playing out scenarios and making clear the actions that staff need to take
- a member asked about the additional designated support leads
ST confirmed that he would take on board the above comments and work with the HRA Communications team to produce a shortened/easier version to go alongside the full policy document.
ST confirmed that there will be a proactive message directing people to the policy and will also communicate on the HRA intranet with concise guidance on how to handle a situation.
ST said the leads are not confirmed. The complaints team will undergo training and he is hoping the public involvement team will be willing to join. Training will also be offered to all staff as a development opportunity for those who may be interested.
There was a question around whether HRA staff should have compulsory training in safeguarding. ST confirmed that this isn’t currently mandatory.
Item 7
AOB including any reflections on the effectiveness of this meeting:
There was a request for HRA staff to put ‘HRA’ at the end of their names on their zoom profile to identify themselves.
BP updated members on the new non-executive directors who have joined the HRA board. They are Marian Knight (new Chair of HRA’s Community Committee), Mark Boswell and Alistair Deniston. Neelam Patel is in the interim chair.
- action - RH to circulate biographies of new non-executive directors.
Marian Knight joined the meeting. AG welcomed Marian to the Committee.
MK apologised for not being able to join the full meeting but is looking forward to future meetings. She gave a brief overview of her work as Professor of Maternal and Child Population Health, based in Oxford. She spends most of her time doing research and with three days in roles for the NIHR. Most of her research focuses around inequalities and working with diverse voices.
MK said she would be at the strategy event on Friday 14 March and she may meet some members at that event. She would be happy to have informal meetings with members if needed.
AG offered to meet with MK along with BP and JS to ensure continuity and handover.
- action - to arrange handover meeting.
TA thanked Andrew for everything his work at the HRA over the past 10 years and that he would be missed.
Next meeting: 12 May 2025, 10:00am – 13:00pm (Zoom).