Making sure a greater diversity of people inform our work and volunteer with us

The story so far

In 2023 we established the HRA Community Committee to increase the diversity of perspectives that inform our decisions and particularly to make sure that the experience of our volunteers and public contributors is considered when we make decisions.

For the first time, Research Ethics Committee (REC) and Confidentiality Advisory Group (CAG) members and public contributors were part of our governance, advising the HRA Board, both operationally and strategically.

The Committee has provided valuable insights that have changed the way that we work. Its members have increased the visibility of the perspective of the HRA Community at the HRA Board, providing advice that is discussed at its meetings. This has included:

• raising issues for discussion, including the use of AI technologies, public involvement in RECs and advice on Community payment processes which have gone on to inform HRA activity
• overseeing the two-yearly survey of HRA community experiences, and developing and monitoring an action plan based on the findings
• informing the HRA’s approach to developing its next strategy, and the content of that strategy
• sharing learning about how to work in a more accessible way so that more perspectives can inform the HRA’s decision making
• providing advice on how the HRA develops its approach to ethical issues

In the course of this work we learned a lot from each other and reflected that we must invest in having meaningful conversations. But over time, members of the Committee and HRA Board shared concerns that their relationship was not as effective as it could be. We agreed that it was time to reflect on its ways of working and explore whether there are other models that would more positively serve the HRA’s needs and make better use of members’ time.

What we learned

Last month the Committee worked with an external facilitator to better understand how we might learn from our experiences to date so that we can work more effectively in future.

The Committee shared themes from the day with the HRA Board:

• it is important that the HRA has trusted mechanisms to hear feedback from its volunteers and public contributors and uses these to inform its approach
• clarity of purpose is key when involving people - targeted activities with a clearly defined timeframe and outcome are very effective
• a diversity of perspectives is important to inform the HRA’s work – broader than that which can be achieved by a standing group
• connection is key, using a range of approaches that enable a diversity of people to take part in a meaningful way to inform the HRA Board
• the HRA must show clearly the impact that people’s contributions have on its work
• the HRA Board discussed these to inform our way forward

Taking a new approach

We’ve agreed that our approach to date was a good model with some key strengths, but that we could work in new ways to better achieve our objectives.

Our ambition is undimmed. Our new strategy has re-stated our commitment to the original objectives that led us to establish the Committee, to be informed by diverse perspectives when we make decisions, and to act on the insights of our volunteers and public contributors to improve their experiences with us.

So, building on what we have learned so far, we are going to take a new approach to achieve these most effectively.

We are going to close the HRA Community Committee in its current form and put in place four steps.

1. Strengthen the ways that we capture feedback from our Community of REC and CAG members and public contributors and use this to inform our work, showing how it has done so.

We heard that “it is important that the HRA has trusted mechanisms to hear feedback from its volunteers and public contributors and use this to inform its approach."

We already welcome feedback from those that work with us. Every two years we survey the experiences of our Community of REC and CAG members and public . We ask for feedback when we meet our REC and CAG members, and when we’re working together on projects or pieces of work. We also have a process for REC and CAG members to share their ideas with us. As part of our response to the 2024 survey findings, we are already reviewing the way that we receive and act on feedback from our Community. The Community Committee provided advice on this at its meeting in November. This review will strengthen the ways that we capture feedback and use it to inform our work, showing our Community how we have done so. This will include making sure that there are appropriate mechanisms to provide feedback in confidence.

The 2026 survey is currently underway. We will involve REC and CAG members and public contributors in reviewing the findings and informing how we act on these and communicate this.

These activities will help us identify how to achieve our HRA strategy 2025-28 commitment: “Our community of volunteers and public contributors have a good experience with us and can see the difference they make, maintaining satisfaction at or above 80%.”

We will also involve REC and CAG members and public contributors in wider work to inform our decision-making as appropriate – as set out in 2 and 3 below.

2. Continue to develop our involvement and engagement activities that ensure people with relevant perspectives can inform our work in ways that work for them.

The Committee members told us that they valued targeted activities with a clearly defined timeframe and outcome. Previous examples included task and finish groups, and an event held in March 2025 which helped us to refine our emerging strategy. The group also highlighted that a diversity of perspectives is important – broader than that which can be achieved by a standing group – and that connection is key, using a range of approaches that enable a diversity of people to take part in a meaningful way to inform the HRA Board.

The HRA already designs engagement and involvement activities to inform our work. The importance of drawing on appropriate expertise, including from patients and the public was set out in the recommendations that led to our creation. We will continue to do so and show everyone involved the difference that they make. This includes working with other organisations and groups to engage with people who we do not have direct connections with or the specialist experience and skills to engage with well. This is in line with our HRA strategy 2025-28 commitment to ensure that “an increasing diversity of perspectives inform our work. We have set objectives for where we want to increase representation in our work and are working to achieve this”

3. Hold six-monthly/annual meetings with HRA Board involving appropriate people to inform our decisions, valuing all of their insights to inform our work.

This would include REC and CAG members and public contributors as well as our wider stakeholders such as researchers, policymakers, sponsors, research ethicists etc. We will select the topics informed by our work plans, feedback from our stakeholders and the wider sector and issues raised by the HRA Board. The topics selected will inform who we invite to take part.

4. Report on the number of people involved in our work and their demographics annually, providing a summary of how they have informed our decisions.

We heard how important it is to ensure that we are informed by a diversity of perspectives and that we show clearly the impact that this has on our work.

We already report on the demographics of our REC and CAG members and public contributors that have worked with us every two-years as part of our Community survey. Going forward, we will invite everyone who takes part in additional activities with us to complete a demographic monitoring survey, reporting on the findings annually.

We will include a summary of our involvement and engagement activities and how they informed our work in our annual reporting.

A step forward

While we are closing the Community Committee in its current form, this is not an ending but a refreshing of our commitment to meaningful involvement to inform our work and strengthening the ways that we do this.

I want to take this opportunity to say a huge thank you to all the members of our Community who proposed and shaped the idea to create a Community Committee as part of our governance and those that gave their time and energy to be part of this. The Committee’s work over the past three years has made a big difference to the way that the HRA operates and informed our decisions. We have learned a lot together that is shaping our next steps and we could not have done this without you.

The change you will see

For us to do our job well, we must actively earn trust in us and the work that we do. That includes ensuring that our work is informed by relevant and appropriate perspectives.

The HRA Community Committee was one way that we did that, and its work was very visible. You could see the topics they were discussing and the advice they gave to HRA Board on our website.

As we take this new approach we will continue to work to make our activity visible, so that you can be confident that we are actively seeking and engaging with relevant perspectives, including patients and the public, to inform our work.

The steps set out above are not the only things we are doing. As part of our new strategy we are doing work to better understand who needs us, what they need from us and why they need it to inform how we work. We want to increase awareness and trust in the HRA across all stakeholders that need us. That may mean changing some of the ways that we work as well as how we talk about them. We’ll keep sharing this work as it develops.

A strength of our new approach is that more of you will be able to get involved. We’ll be reaching out and inviting people with relevant perspectives to inform our work, working with you to design activities that work for you. For example, at the moment we are working with a group of people under 25 to understand how to better support them to volunteer with us. We value every second you can give us to help make it easier to do research that people can trust and want to make the most of everyone’s time and capacity by working effectively with you and we look forward to doing so.