Chair:
Marian Knight (MK)
Community Committee Members:
Anne-Laure Donskoy (A-LD), Christine Vial (CV), Eleni Chambers (EC), Louise Vale (LV), Margaret Cheng (MC), Sandra Duggan (SD), Simon Kolstoe (SK), Stephanie Ellis (SE),
HRA Staff Attendees:
Becky Purvis (BP), Louise Braley (LB), Jonathan Fennelly-Barnwell (JF-B), Kat Evans (KE), Teagan Allen (TA), Georgia Copeland (GC)
HRA Guest Presenters:
Naho Yamazaki (NY) facilitator for item 2
Nicola Gilzeane (NG) and Dami Odunlami (DO) for item 3
Karen Williams (KW) for item 5
Tamsin Destrube (TD) for item 6
Apologies:
Alisha Aman (AA), Eve Hart (EH), Jan Speechley (JS), Paul Mills (PM), Sarah-Jayne Ambler (S-JA),
Welcome and apologies:
MK noted apologies, welcomed the members to the meeting of the Community Committee and asked that all attendees briefly introduce themselves. MK noted that she would be chairing the meeting solo due to apologies from JS, the other Co-Chair, and handed over to BP.
BP gave the following verbal updates: BP informed the Committee of one correction from the last meeting. In conversation with Matt Balding (MB) a question was raised asking if public involvement payments are captured in the Better Payments Practice Code (BPPC) performance reported in the finance report. MB stated they were not but BP advised that this was incorrect and public involvement fees paid via invoices are included in the BPPC performance reporting in the finance report that goes to HRA Board every quarter
BP provided an update on the impact of the Committee’s work from last meeting including the following:
- informed HRA strategy development of which a further update would be shared in the meeting
- informed the payments item coming to the meeting which was a result of a Committee conversation around equity of payments to Community members
- informed policies which are now being updated in line with advice. HRA staff have been undertaking safeguarding training, both to upskill and inform development of the safeguarding policy, which the Committee reviewed in March
- approach to community engagement work and how this is being taken forward. An update on this work will be shared later in this meeting
For Information: Paper C – Community Committee Effectiveness Survey Report 2024
BP noted that the final Effectiveness survey approved by the co-chairs had been circulated. BP advised that staff had since been made aware of one member who was not able to send feedback, noting that the decision would be reviewed with an update provided once this had been received.
Acknowledged the Supreme court ruling on the Equality Act and updated that the HRA is awaiting updated guidance from EHRC, expected later this year, to inform action to ensure compliance with the legal position. Restated guiding principle to be an inclusive environment where everyone feels respected, values and able to bring their whole selves to work or to their volunteering activity. On 16 April 2025, the Supreme Court handed down its ruling in the For Women Scotland case, which centred on how "sex", "man" and "woman" are to be interpreted in the Equality Act 2010. On 25 April the Equality and Human Rights Commission (EHRC) published an interim update with their initial reflections on the judgment. The EHRC will be conducting a public consultation in mid-May, lasting for two weeks, before finalising their draft statutory Code of Practice later this year.
BP assured members that the HRA are taking a thoughtful, measured approach to enable legal compliance and maintain their duty of care to all staff, and everyone in the HRA Community. Throughout this process, the priority remains ensuring the HRA continues to be an inclusive environment where everyone feels respected, valued and able to bring their whole selves to work or to their volunteering activity.
BP noted two items on the agenda where information would be shared initially during the meeting with time created for member feedback post meeting. BP explained that the information was not available prior to the meeting and the choice to share in this way allowed the information to be presented in context.
Information sharing: BP advised that GC would be undertaking work to review how we hold and share information that members share with us. As there are several members of HRA staff that work with the Committee, there is a need to share information appropriately and ensure members understand how this is shared and that expectations are consistent.
The Community Committee March Meeting Minutes (Paper B) were ratified.
Item 2
For review and advice: Paper 1 - HRA Strategy
BP presented an update on the development of the HRA Strategy including an overview of the skeleton strategy content that is being prepare for HRA Board approval on 21 May.
Slides were sent to all members following the meeting with an opportunity to share feedback by close of play Monday 19 May. This advice will be provided to HRA Board alongside the draft strategy for their discussion and approval on 21 May.
Committee members were given the opportunity to ask questions and share any immediate insights in the meeting with the following questions in mind:
- are the outcomes that we are setting ourselves to achieve over the next three years not ambitious enough/appropriate/too ambitious?
- is there anything missing?
- anything that the HRA should consider when developing supporting information when publishing this strategy?
Feedback included:
- concern that the HRA's ambition to reduce the burden, time and cost to do research by streamlining the set-up of research at sites was outside the HRA's control and therefore too ambitious. On the converse it was noted that this could be an opportunity for the HRA to use and increase its influence in the system to drive change
- being clear what was within the HRA's remit and what was beyond it - i.e. the HRA could work to be a trusted organisation but is not solely responsible for trust in research
- concern over the process of developing the strategy - limited opportunity for the community committee to review the content, would value more time to meet and discuss this
- concern over the profile of public involvement in the new strategy
- consider how the strategy is presented to different stakeholders who will need different information and approaches to understand relevance and influence
- the importance of the strategy explaining who the HRA is and what we do clearly and concisely - being welcoming so that the HRA can earn trust
- reference to AI must consider the risks or issues that may arise from the use of AI within the strategy, this should be addressed where possible
- concern over the limited references to social care - request to make this more prominent
- the language and tone feel corporate with a focus on money and or market that lacks humanity and engagement
- important that the strategy is written and presented in plain language
- concern was raised about digital exclusion and the HRA's focus on becoming a digital organisation.
Action – GC to collate feedback received post meeting to share with the board alongside the final strategy draft.
Item 3
Optional session – for information: Slide Deck B - Community engagement update
Guests: Nicola Gilzeane, HRA Engagement Manager and Damilola Odunlami, HRA Public Involvement Manager
NG and DO introduced themselves and presented an update on HRA Community Engagement. Included were findings from focus groups undertaken with:
- 7 participants from the black community facilitated by the Caribbean and African Health Network (CAHN) who work to tackle health inequalities in the community. Key takeaways: The link between lack of engagement with research and health inequalities is visible and concerning to the community. Those taking part encouraged us to continue and commit to this work to make a difference
- 10 attendees aged 18-24 from the NIHR Applied Research Collaboration (ARC) Greater Manchester Young Persons Advisory Group. Key takeaways were: Lower levels of trust in online information about health research. Knowing about the HRA and what we do would increase trust in taking part in health research
Financial concerns are the key barrier to young people working with us.
To increase engagement, we must meet young people where they are, be clear about who we are and what we do and use new methods to communicate that.
MK asked members present if they had any questions.
A member commented that they found the community engagement work undertaken looking at trust in and barriers fascinating. They expressed particular interest in looking at the perceptions of the HRA and how communities engage with it. The member noted several different HRA engagement opportunities and queried whether there was a list of opportunities that could be presented to these groups which highlighted the different types of work and time commitments associated with them.
NG confirmed that they did provide a breakdown of all the different things the HRA do, the time commitment and training required when talking with these groups. The young person group quickly identified that they would not be able to commit to the work of REC for example but would be more interested in taking part in public involvement work which tend to more ad hoc and therefore better suited to their availability. NG notes this as important learning in being clear about what each activity involves.
The member noted it was unlikely that everyone would want to join REC or CAG, but noted opportunities for other types of involvement
NG stated feedback from young person group advised using some opportunities as a gateway, suggesting that if they were able to be a part of a one-off activity this would be an insight into our work, which might then lead an individual to consider further involvement, such as on a REC.
A member commented on digital exclusion, noting that some groups were excluded. They highlighted the assumption that everyone is online and stated classic forms of advertisement such as physical posters and leaflets were eye catching and often work well for both those who are on and offline.
The Chair noted the interesting observation that young people did not trust what was online. DO confirmed young people highlighted misinformation online and stated they would have more trust in information provided in person by someone they knew such as a GP.
The member confirmed that made sense as many people who are online like to meet people and see posters or photos of who is involved. They added that the approach works very well for everyone.
Item 4
Optional session – for information: Slide Deck C - Update on progress with Community Committee recruitment.
Guest: Teagan Allen, HRA Policy Manager
TA introduced herself to the Committee and presented slides updating on work to prepare to recruit new members to the Community Committee. This is being led by a working group that involves two members of the Community Committee and HRA staff. The Group is developing the HRA’s approach to the full recruitment process, from job advert, applications, recruitment and induction of new members. A proposed timeline was set out involving recruitment over the summer with a view to new members joining in November.
A member queried why recruitment was moving forward while the feedback from the recent effectiveness survey around the ways of working of the Committee was yet to be addressed. They noted previous responses on this suggesting the timeline allowed for issues to be addressed but raised concerns that this was not true as the committee does not meet regularly.
MK asked the member to clarify if they were suggesting recruitment timelines were reviewed or should not take place at all.
The member confirmed they were suggesting a review of timelines and stated discussion around some of the comments was worth having to avoid moving things along without solving issues that had been raised. MK and other members agreed timelines should be moved, noting other considerations including school holidays.
Another member commented on issues raised through the effectiveness survey and stated one reason for difficulties could be the lack of an in-person meeting when the Committee was established. They acknowledged it was not the overarching reason but noted it as something that was raised when they did get to meet in person. It was felt that the process of introducing and integrating new people should be carefully thought out especially given that there are current issues remaining from the way in which current members were integrated. The member further acknowledged that meeting in person does not work for everyone and that it was a complex issue.
MK agreed it was an important, particularly when thinking about the induction process.
One member suggested different timelines for different members as they felt recruitment for REC and CAG members could commence whilst other areas may take longer.
BP informed the members that work was beginning in the background to think about how to get the committee to work well together and plans to design what is needed to do to get there. This would be an item on the July meeting agenda.
A member referenced the previous session in engaging other groups and expressed interest in how the message of recruitment would be presented. Whilst they noted the importance of recruitment materials and information, they stated thought should also be given to increasing diversity if this was one of the aims. The member added that if the HRA hoped to expand recruitment into different groups the most effective method would be having someone go out to communities to talk about it. They noted that if individuals felt excluded by the advert due to lack of accessibility, they were unlikely to engage and suggested the HRA consider more imaginative methods of recruitment.
The Chair agreed that these finding came through quite clearly in the community engagement update.
Action – review proposed timeline for recruitment.
Item 5
For review and advice: Paper 2 – Community payments policy updates
Guest: Karen Williams, HRA Deputy Chief Executive and Director of Finance
MK noted that the papers had provided a brief overview of the context for this item, regarding the need for review and change to the current payment policy. It was highlighted that no changes have been made yet with the following discussion being the start of the process.
KW provided context on the need to change the HRA’s current payment policies and the complexity of doing so. KW emphasised the need to find a practical and balanced approach that reflects the diversity of roles and current working practices.
KW acknowledged that discussion on changes can create uncertainty and reassured attendees that no decisions have been made. Members were encouraged to step away if needed and not to feel pressured to share personal information.
KW outlined a proposed framework to better define, focus and distinguish the roles within the HRA community, setting out specific expectations and where payments may be offered
- REC/CAG Members Role
- HRA Board Sub-Committee Members Role
- Public Contributors
- REC/CAG Additional Activity Role
KW acknowledged the need for clearer role definitions and tailored policies.
KW highlighted the following key considerations and aims:
- a consistent payment approach for each role will be developed
- input from community members will be sought on the proposed model
- current inconsistencies in payment routes will be acknowledged and addressed
- aim is to consolidate existing policies (e.g. chairs’ honorarium, member expenses) into overriding policy, not replacing but aligning
KW explained next steps would include engaging with community members for feedback and suggestions how best to do this work and advised that the information presented would be shared with members following the meeting for comment.
MK asked if members agreed that there are the four main roles for community members.
KW confirmed that all REC and CAG roles are voluntary, although some roles are offered an honorarium.
It was noted that for some roles there are policies about how payments are made whilst there were no policies for others – MK questioned what advice there would be for developing new policies and an overarching policy that encompassed payment for all four roles.
A member stated their understanding was that all REC and CAG roles are voluntary but noted mention of some payment.
KW confirmed they are voluntary explaining that although honorarium is offered for some roles these were still considered voluntary as the payment was ‘in honour’ and did not cover the time or suggest any obligation. KW reiterated that all roles, Chairs and Vice Chairs or members are voluntary.
One member queried what category the community committee would fall under in the four roles proposed. KW confirmed the Community Committee is a is sub-committee of the HRA board.
Another member noted honorarium amounts are consistent and queried whether changes to payments would include considering varying rates for experience.
KW explained the aim is to ensure payments are consistent where it is possible and noted that there are currently differences in the methods by which payments are made where these are offered. Committee honoraria are paid via payroll while public contributor payments are paid through invoice. KW stated the need to be sure on what is usual practice and expected. Clarified that the HRA are first trying to define roles and where payments should be offered for each role. HRA is not currently considering offering different payments for the same role based upon varying experience.
One member asked if HRA have looked at other health bodies and whether they would ensure they are consistent with other public bodies noting it as an area the HRA would need to do some thinking around given known issues with tax implications for example.
A member stated their understanding was that HRA has for some time been looking at NIHR adding that whilst NIHR, NICE and NHS England are consistent, there are inconsistencies within organisations. They emphasised the importance of ensuring equal pay for everyone, noting that people are not approaching this work for high payment. Regarding the proposed roles outlined, they noted they could fit into categories two and three, and questioned whether additional responsibilities refer to community committee work or REC and CAG roles. The member highlighted additional work they had done on recruitment for both Community Committee and HRA staff, which was unrelated to the group. KW confirmed that the next step will be to create an advisory group which would help define roles, and how we would categorise these.
KW discussed the complexity of benefit advice and noted that the DWP is not always helpful in guiding organisations. The risk of legal challenges was acknowledged, highlighting the need for balance between providing clear guidance and ensuring a good experience for individuals. Confusion regarding employment status, especially in relation to HMRC was also noted.
A number of members noted the importance of defining the roles well. A member suggested that more work is needed to define roles clearly which would help to clarify decisions as to whether roles would be paid and how those payments should be made. They stated the current proposal is too vague to be useful in decision-making about payments.
Another member noted that some individuals are already performing tasks that do not fit neatly into the four proposed role definitions.
One member shared their experience in similar work, noting discrepancies in how roles are interpreted. They pointed out that depending on the role, they are sometimes classified as self-employed or given worker status with one organisation also providing them with a contract, making tax management difficult. They highlighted that the NIHR’s payment rates had not changed since 2009, with some organisations recognising the need for higher rates and adjusting accordingly. The member also advised against aligning with NIHR instead encouraging that rates be reviewed accordingly. They added that different organisations have varying approaches, such as NHS England and NICE, which often did not offer payment. Another member noted the NIHR model only pays for meetings, not preparation time, which would be difficult for public contributors
KW acknowledged the points raised and agreed with the need for a broader review, reiterating the importance of fair compensation for wider participation.
KW undertook to share more information about the proposed advisory group to develop this work including the time commitment and what will be required and will then invite Committee members to be involved.
Action – information to be provided outlining sub-committee work what this entails, and the time commitment involved. GC to provide once available.
Item 6
For review and advice: Slide Deck D – Update on Clinical Trials Regulations
Guest: Tamsin Destrube, (TD) - Business Improvement Operations Manager
TD joined to provide an overview of changes to UK clinical trials regulations. MK reminded members that they could not comment on the updates to the Clinical Trials Regulations as they had already been agreed but advised that comments on how the changes are to be communicated were welcomed.
Committee members were asked to review and advise on how the HRA talk about the changes to:
- the research community, in addition to what we are already doing, and the wider public
- in a way that highlights the benefits of these changes and reassures people that being faster, simpler and more proportionate does not mean we are cutting the quality of our service
BP informed members that the legislation includes a provision for simplified consent and a paper will be brought to the Committee’s July meeting to discuss this further.
MK invited initial reflections from the committee on how the HRA could emphasise the importance of maintaining the quality of service while implementing any changes.
A member observed that the changes are largely technical and would be minimal and of little interest from a public perspective. They suggested that changes be framed as technical adjustments aimed at making clinical trials easier to conduct, with limited visible impact for the wider public. While these changes might feel significant to those closely involved, those not embedded in the process are unlikely to perceive a major difference. Other members agreed with this observation noting the comments had helped frame the issues clearly.
Another member stated that they would need to be convinced that increased speed and simplicity do not compromise service quality before they could advocate for the changes. While they agreed that improvements are welcome, they expressed concern that the proposals might be seen as cost-cutting or aimed purely at speeding up processes to attract more people to do research in the UK. The member commented on reference to participant involvement, diversity and inclusion considerations having been rejected and requested further explanation.
There was general agreement that messaging should be clear, simple, and genuinely informative, while continuing to demonstrate a commitment to high standards, inclusion, and safety.
MK suggested that communications should highlight how the regulatory changes are intended to provide faster access to clinical trials and medicines, while maintaining rigorous standards. Members agreed with this framing of communication but highlighted the need for transparency around who is affected by the changes and how. They reiterated the importance of being assured that safety and diversity would not be compromised.
Another member raised concerns about the apparent lack of focus on diversity and inclusion in the revised regulations and queried whether requirements for lay representation on Research Ethics Committees had changed. TD clarified that, for CTIMPs, the requirement remains a minimum of one lay member. While quorum rules now allow meetings to proceed if a non-chair, non-lay member drops out at the last minute, guidance still recommends a panel of seven, including lay representation.
A member noted that while many of the changes may appear technical, changes to lay member requirements would be significant from a public perspective and should be clearly communicated.
TD shared that LB had been developing guidance and communication materials to help explain the changes. LB commented that, while the impact of the changes is limited, the language currently used may sound concerning. She emphasised the need to reassure people that already high standards are being upheld and that the improvements in timelines are not at the expense of quality.
MK stated that, in terms of diversity and inclusion, the UK continues to go beyond minimum requirements and that this leadership position should be clearly communicated.
Item 7
AOB including any reflections on the effectiveness of this meeting
None
MK thanked everyone for joining and contributing to the meeting.
Members commended MK on efficient chairing of their first meeting, noting that the meeting ran to time despite a full agenda.
Next meeting: 08 July 2025, 09:30am to 12:30pm (Zoom).