Community Committee minutes December 2023

Item 1- Welcome and apologies

Andrew George welcomed the members to the first official meeting of the Community Committee and introduced HRA staff in attendance to observe and our guest speakers from Fruitful Analytics.

AG confirmed that a representative from the Government Internal Audit Agency (GIAA), would not be attending the meeting to observe.

Item 2 - Agreeing HRA Community Committee Terms of Reference – a working session

At this meeting the Community Committee members discussed views on key principles for how the Committee is set up and run.

After the meeting, the HRA will circulate a draft Terms of Reference reflecting our discussion for this to be agreed.

Excerpt from paper:

“The Committee was established following a consultation. A summary of the results here: Acting on what you’ve told us – a blog by Director of Policy and Partnerships, Becky Purvis - Health Research Authority (hra.nhs.uk)

The following themes were discussed:

• Committee membership
• Terms of office
• Relationship with HRA Board - how the Committee interacts with and informs HRA Board
• Chairing
• Scope - what the Committee offers advice on
• Anything else?

Committee membership

Currently, Committee membership is comprised of HRA Community members only which includes REC, CAG, and public involvement network members.

The HRA coordinates the English RECs but works closely with the four nations. This is reflected in the Committee’s membership, we have one member of a Scottish REC, all other members are from English RECs, CAG covers England and Wales. Members of the public may be involved in work that is England-only or UK-wide through engagement with the HRA. At least half of members do not have professional expertise in clinical research or health or social care.

We know that two-thirds of respondents (68%) thought that the Community Committee should include other groups of people, while one-third (32%) felt that they membership should be restricted to people who work with the HRA (as a REC, CAG or PIN member). 59% strongly agreed or agreed that the Community Committee should be made up of at least half of people who don’t have professional expertise in clinical research or health or social care. The number of respondents who disagreed or strongly disagreed is much lower at 25%.”

Committee members were asked:

What other groups of people should the Committee include, if at all? We heard that a balance of professional expertise and lay perspectives among members is important. How should we define ‘professional expertise in clinical research or health and social care’? Is it important for Committee membership to reflect the four nations?

Members discussed the importance of distinguishing between what a ‘committee’ is and what a ‘forum’ is. It was clarified that the Community Committee has been established as formal committee within the HRA’s governance that advises the HRA Board.

The members agreed that the committee would benefit from an increased diverse membership in the future which is representative of society.

Members agreed that it is important to have the right balance of people – the committee wants to listen to as many voices as possible, it must maintain the ability to function, fulfil its purpose and make decisions appropriately in a timely manner.

Going forward, members suggest HRA utilises existing channels and partnerships to promote committee activity, aid in future recruitment and invite engagement including the Shared Commitment initiative.

Members agreed that part of the role of the Committee is to reach out to the outside community for their views and reach underrepresented groups.

It is currently unclear what ‘others’ captures in terms of membership – clarity is required on what is meant by the definition of other and if this includes researchers/academics etc.

Members agreed that the committee needs to appeal to people outside of the HRA community and we need to be proactive in reaching out to other communities to attract future members.

However, in the short-term there was support, to get up and running with the current Committee membership.

Members were supportive of ensuring a balance of perspectives and asked that the HRA has a clear definition of ‘professional expertise’ in order that we do not lose or exclude members and potential members who have ‘lived’ experience.

Lay and Lay plus definitions are used in the current Clinical Trials regulations, and members request that the HRA removes the use of ‘expert’ and ‘lay’ terms when referring to committee membership if possible. Some members hold different identities and participate in numerous different fields and groups.

Members agreed it is important for membership to reflect the four nations.

Action – HRA team to better define ‘professional expertise in health and social care’ for the purposes of enabling the Committee to include a balance of professional expertise and lay perspectives in the draft Terms of Reference.

Action – HRA to work with members to capture and share the experience that they bring to the Committee.

Action – Committee’s scope to include diversity and inclusion.

Action – Committee to continue to seek representatives from the four nations.

Terms of office

Excerpt from paper:

'Currently, each Committee Member has no defined term of office. When establishing the Committee, the Community Insight Group discussed the value of different terms of office, with some favouring short (one year) and others favouring longer (approx. five years). It is helpful to have continuity to support the Committee’s processes and decision-making while also increasing the diversity of perspectives.'

Committee members were asked:

How long should the term of office be?

Members discussed how we need to take a flexible approach to membership given that this is a newly formed committee. Succession issues must be considered, and the HRA team must ensure the continuity of the work of the committee in the future when membership terms end.

A two-year term would mirror what the HRA have for independent members of our HRA Audit & Risk Committee. We have the option to extend membership by a further two years.

Members discussed the possibility of a term of two years with an option of a further two-year term feels right. This will allow members to settle into the committee and allow a member to remain on the committee if they wish to do so. There will need to be a plan in place to allow recruitment of new members before terms end, but which allows continuity of the committee – this may involve several members leaving and several members remaining in situ. This can be decided randomly or amongst members. A maximum term should be set.

Existing members should be asked at the end of each year if they want to continue, and the HRA team should consider the possibility that a different membership may be required to create a specific programme in the future, on an as and when, case by case basis.

Members were in favour of the HRA team commencing recruitment prior to terms ending and members taking on a ‘buddy scheme’ type role to integrate and train new members to the committee up to 6 months before a term ends. This will ensure continuity and offer new members the opportunity to learn and have a support network in place.

Members accept there will be some natural wastage and people will move on before terms are up. This will give some natural progression and new involvement.

Action – Terms of Reference to include a suggestion of a two-year term for Community Committee members with an option to extend membership by a further two years.

Relationship with HRA Board

Excerpt from Paper

“Currently, Andrew George, non-executive Director of the HRA Board chairs the Committee. Andrew’s term at the HRA ends in December 2024. (this mirrors the Audit and Risk Committee, which also advises HRA Board and is chaired by a non-executive director of the HRA Board). We plan for the Committee to review quarterly reporting papers before they are reviewed by the Board, providing advice to the Board. Over the coming year, we will explore how the Committee would like to identify issues and raise them with the HRA Board. The Community Insight Group used to have a slot on the agenda to report to Board. The HRA Board is open to how it can work differently and effectively with this Committee to have the biggest impact.”

Committee members were asked:

How should the Committee have a formal link with the HRA Board? Should the HRA Board member sit on the Committee? Should a HRA Board member chair/co-chair the Committee? Should Community Committee reporting become a standing item on the HRA Board agenda? What else do we need to consider when supporting the relationship between the HRA Community Committee and Board?

Members asked if it possible for member(s) to attend the HRA Board meetings moving forward as a representative of the committee.

Members noted that the committee will act in an advisory role to the HRA Board who will be required to listen and consider the advice provided. The HRA Board will remain as the final decision maker but feedback on all decisions taken contrary to advice given will be provided to the committee for consideration.

Action – Community Committee report to become a standing item at the HRA Board to be presented by a Community Committee member. We will also explore additional ways that the Committee and Board can interact, for example through meetings and workshops.

Chairing

Committee members were asked:

How should the chair of the HRA Community Committee be chosen?

Members agreed that a co-chair of the committee is required in the future. Members need to understand what this means, what being a co-chair will involve, length of service, responsibilities and expectations, nomination process, declarations of interest and the voting process involved in becoming co-chair.

Action – HRA team to create a role profile for a Committee co-chair and propose an appointment process for the Committee to review and agree. We will then appoint a co-Chair from among the existing Committee membership, with an aim for this person to be in post by September 2024.

HRA team to confirm:

• role
• length of service
• responsibilities & expectations
• time commitment
• appointment process

Scope

Excerpt from paper:

'The HRA have established the Community Committee to provide advice to the HRA Board on how we run the HRA and help us to better support and improve the experiences of those who volunteer and work with us. We know that 85% of respondents strongly agreed or agreed with the proposal to broaden the scope of the Community Insight Group to provide advice on how we run the HRA and help us to better support and improve the experiences of those who volunteer and work with us.'

Committee members were asked:

Does the following wording capture the scope? Is there anything that you think the Committee should do that is not captured here?

The Committee will be responsible for:

• Reviewing and providing advice to the HRA Board from the perspective of the Community regarding key strategic documents (e.g. HRA strategy, business plans etc) and HRA policy decisions which impact on how the HRA operates.
• Providing advice to the HRA Board with regard to any
  issues, developments, proposals or policies which may
  impact on our Community.

Members agreed that the responsibility statements feel right.

Members noted that we should refer to the Community as the ‘HRA Community’ in documents.

Action – HRA to use the above wording to describe the scope of the HRA Community Committee in its Terms of Reference.

Is there anything else that we should consider in drafting the HRA Community Committee terms of reference?

Members agreed that an annual review process of the Community Committee terms of reference is required.

Action – HRA team to put an annual review process of the Community Committee terms of reference on the Community Committee’s agenda.

Item 3 - Optional break out room sessions

The Community Committee members were split into two optional zoom breakout rooms, for 50 minutes, each with an allocated HRA facilitator and notetaker, to discuss the following topics:

• Agreeing HRA Community Ways of Working resource
• Informing the 2024 HRA Community Survey

Room 1 - Agreeing HRA Community Ways of Working resource:

Becky Purvis provided an overview of the HRA Community Ways of Working resource, including how the resource’s purpose and scope, how it was developed and reviewed.

Committee members were asked to review the resource which will be approved for publication on the HRA website by the internal HRA Community Group.

Members advised that the following amendments and edits be made to the resource:

• Consider rephrasing “We support each other to learn, to share successes and to grow where we make mistakes.”
• Consider removing wishes and viewpoints from “To maintain a safe, inclusive environment, we expect everyone to show equal regard for the feelings, wishes, viewpoints, dignity and rights of others, whether face to face, virtually, or on social media.”
• Consider changing the use of the word ‘virtually’ to ‘online’.
• Consider changing “By law, we are required to have due regard to:” to include ’this is integral to our organisational values too.’
• Source origin of text “not share a protected characteristic (this includes age, disability, gender reassignment, marriage and civil partnership, pregnancy and maternity, race, religion or belief, sex, and sexual orientation).” 
• Consider combining the following first and third bullet points: (the elimination of discrimination; the advancement of equality of opportunity; fostering good relations between people who do.
• Consider rephrasing “Not to do so could carry significant consequences, not only for individuals and the organisation, but for how the public views and trusts the work of the HRA.” This may be perceived in a negative way and put off potential members applying to join.
• Consider changing” avoid making assumptions about others” to ‘be aware of making assumptions about others.’
• Consider removing the sentence “listen to people’s intention and be understanding about language.”
• Consider adding a sentence stating that page numbers will be included here “send out documents in an accessible format, and in alternative formats where needed as a reasonable adjustment”.  
• Explain what HRA means by accessible and how people can request reasonable adjustments and possible use of ‘Passports’ containing this information.
• Consider changing “avoid abbreviations and jargon”: in some cases, and meetings abbreviations are required, state that use of such must be accompanied by an explanation.
• Consider removing the sentence “be mindful that there are no right answers”. Context is key and this may not always be the case.
• Consider including a reference to observers in the resource.
• Consider defining what HRA means by ‘fair’ and ‘transparent’ and the use of these words in the resource.
• Consider providing more information about what a conflict of interest is and signpost to HRA guidance in the resource.
• Consider including a reference to accessing commercially sensitive information via email in the ‘Looking after personal data and information section’.
• Consider including or combining terms and conditions for REC members in this resource.
• Consider including a section on what you can/cannot reference in a REC meeting in this resource.
• Consider adding ‘publications’ to the sentence “We also ask that you share any articles in relation to the HRA, including REC and CAG business, with the communications team before they are published.” 
• Consider explaining what people can do if things do go wrong in this resource.
• Consider creating a position statement for people to use around the advice “If you’re involved in work or activities that are not part of your official HRA role or responsibilities, you can declare your work with the HRA but please make it clear that you’re not representing the HRA and that your involvement is in a personal or non-HRA capacity.”
• Consider adding ‘publications’ to the sentence “This applies to in-person events, meetings and projects, as well as online activities such as social media posts, blogs, articles and comment pieces.”  
• Consider adding ‘usually’ or ‘normally’ to the sentence “We don’t want it to cost you money to work with us. If you need travel and accommodation, we will arrange this for you. If you incur expenses when you work with us, you can claim these back.”
• Consider adding a sentence to the section ‘How to raise a concern and how will this be acted on’, which encourages engagement and dialogue, advise to raise a concern immediately, if possible, with a HRA contact for a resolution to be made as soon as possible.
• Consider adding a link to HRA Latest, HRA Now and possibly a Clinical Trials Regulation update to the ‘How to get in touch with us’ section.
• Consider adding a sentence that claiming expenses and booking travel and accommodation for members will be looked at on a case-by-case basis.
• Members discussed the need to discuss how we manage the use of the Zoom chat and how best to implement reasonable adjustments and access requirements.

Action - volunteer members to review the Ways of Working resource before going live.

Room 2 - Informing the 2024 HRA Community Survey:

Helen Mansfield from Fruitful Analytics provided an overview of the survey, including how the survey is conducted, what it will cover and how the results will be reported. The members were asked to consider the questions below:

a) How the survey will be conducted: including any insights as Community members on what we should consider about how we communicate, the experience of completing etc.

We want to:

• Build on previous surveys.
• Identify levels of satisfaction of the sample respondents.
• Identify effectiveness of initiatives to attract retain and support.
• Identify potential barriers for respondents.
• Highlight insights and issues identified by the volunteer community.
• Receive suggestions of ways to recognise and reward members.
• Better understand the special characteristics of the volunteer community.
• To inform future equality, diversity & inclusion (EDI) strategies.

Committee members were asked:

What do you like about this approach? What do you think may work less well? Do you have any suggestions for how we could improve our approach? How can we encourage people to respond to the survey?

Members felt that CAG often gets REC targeted information and ask that the HRA makes it clear the survey is relevant to both CAG and REC.

Members would like an open text box at the end to ask questions.

Members felt that there may be an underlying issue regarding public involvement. Some people may or may not be involved in aspects of HRA work so if the survey is going to all members of the Public Involvement Network, some thought may need to be given to this. Suggestion that an earlier question asking if people are involved in work, would allow us to analyse the different responses.

Fruitful Analytics confirmed that the survey contains approx. 70 questions with more depending on how they are answered which should take the respondent around 15 minutes to complete. The question set can still be refined if needed.

Members noted that not everyone is comfortable with completing surveys online and asked if circulating a paper survey is possible? Fruitful Analytics can provide a hard copy of the survey, but anonymity would be sacrificed. Members suggested that respondents could identify as REC/CAG members without giving names to ensure anonymity.

Members ask that we be mindful using the term ‘volunteer’. It was felt that once someone is paid for their contributions, they are no longer considered a volunteer.

Fruitful Analytics confirmed that an option to save survey answers and come back later is possible.

Members agreed that it is important to give a range of methods for engaging with the survey and that Fruitful Analytics should examine the length of questions.

Members asked how often Fruitful Analytics follow up for responses. It was confirmed that responsibility of following up for responses sits with the HRA. HRA Communications Team to send follow up emails.

Members asked if it is possible for Fruitful Analytics to produce audio recording of survey answers. HM confirmed that this is possible and will explore options with the HRA team.

Action – Fruitful Analytics to look at using a better word for “Reasons why you chose not to get involved with us”.

Action – examine length of questions and ensure the survey is accessible.

b) What the survey will cover:

Committee members were asked:

Is there anything that you would like to better understand, or you think we should find out about our Community’s experience or perspectives that is not captured? Why would that be helpful to understand? Is there anything that we should think about when drafting the questions? i.e., how we frame a question, what options we provide to answer etc?

Members agreed this was difficult to answer without seeing the survey format. Members agreed to send proposed questions they think are missing to the HRA in writing. There were offers to test the survey from CV, MC, AL, SD & LV.

c) How the survey findings will be reported:

Fruitful Analytics will provide a written report that will be published on the HRA Website. We expect the report to contain a summary of the key findings and any recommendations for future action. Survey data presentations will be delivered to HRA staff and the HRA Community Committee.

Committee members were asked:

What do you like about this approach? What do you think may work less well? Do you have any suggestions for how we could improve our approach?

Members asked if there could be an opportunity to present the survey findings to the wider community as well as being on the website? Fruitful Analytics confirmed that there is no direct plan yet but there is a commitment to publish the findings. Fruitful Analytics will give the Committee an overview of the results along with other internal HRA teams.

Action - HM will take forward Committee member suggestions and finalise survey.

Action - Volunteer members to test Community Survey before going live.

Final communications will take place in January 2024 with a survey launch date of 29th January 2024.

Proposed timeline:

Monday 8 January - Draft of the questions shared with members of the staff Community Group for review and feedback.

Friday 12 January - Final date for feedback from Community Group - questions signed off subject to feedback from testing phase.

Tuesday 16 January - Survey available (developed from the agreed questions).

Wednesday 17 January - Acceptance testing: HRA staff and members of the Community Committee are sent the survey link to acceptance test.

Tuesday 23 January - Final date for feedback from testing phase.

Monday 29 January – Survey to go live.

Item 4 Strategic performance reporting

Guest Speaker: Karen Williams, HRA Deputy Chief Executive and Director of Finance, Procurement and Estates (Executive Director)

The HRA reports on its performance each quarter for the HRA Board to review.

We do this using the following documents:

• Strategic performance report
• Strategic risk register
• Strategic engagement report
• Portfolio Dashboard
• Finance report

Going forward, we plan to bring these papers to each Community Committee meeting ahead of the Board, enabling the Committee to comment and share their insights ahead of the Board’s review.

At this meeting, we shared the reports for Q2 (July-September 2023), which we reported at our November Board meeting, giving members the opportunity to ask questions about them and explore how we should approach reviewing these and advising Board going forward. We are always working to improve the way that we do this reporting, so we would also value your feedback on how we can make these reports more meaningful and useful for members.

Members noted that recent MHRA delays had resulted in a red RAG status: however, this was outside of HRA control or fault and asked if this should in fact be highlighted as a significant issue.

KW explained that whilst the MHRA delays were not explicitly HRA’s fault, we are a part of the collective system, with our combined working with MHRA, the delays remain a joint, shared problem which impacts us both and must be considered a shared problem, that HRA must also help solve.

Members agreed that the HRA should promote success and positive outcomes, when possible, for example the small number of complaints HRA received in comparison to the number of studies approved.

Members agreed that it would be useful to view public involvement costs/payments data. Members noted that the HRA regularly pays public contributors in a timely manner.

Members noted that the HRA Research Systems Programme (RSP) has a significantly higher budget in comparison to all other areas of work. Members agreed it would be useful to understand what this project involves, for the HRA team to explain its importance and to consider how the wider community can be included in this work moving forward.

Action – WGS to attend a future meeting to present the Strategic engagement report, which there was not enough time to discuss in this meeting.

Action – Public Involvement activity and costs to be more visible in HRA strategic performance reporting where possible.

Action – HRA to provide an overview of the Research Systems Programme, what it is and why it matters, supporting a discussion of where the HRA Community and wider community can engage with this.

Item 5 AOB and next meeting

Our next meeting is on Friday 1 March 2024 from 10am – 1pm

Action – TA to circulate call for volunteer survey testers.

At our next meeting we would like to get your views on some more strategic issues including:

• Community engagement – our work to build relationships with community groups who we’re not already engaged with to learn how the work we do, and how we talk about it, is received, heard, and understood to inform our work.
• How we enforce standards to earn people’s trust in research while also making it easier to do research.
• Discuss the HRA Research Systems Programme (potentially May’s meeting)