Calling all patients and public contributors - can you help us put people first in research?

What is clinical research?

Clinical research is research that involves people and is focused on improving their health and care. Usually the people taking part in clinical research are patients, but not always. Often the research happens in a hospital or GP setting but it also occurs in other places, for example in people’s homes.

Why are we doing the ‘People-Centred Research Project’?

• We want the UK to be a place where health and care for everyone is improved by outstanding clinical research.
• We think that clinical research is outstanding if the right research is done, and it is done in the right way. At the Health Research Authority, we are particularly interested in the second part of this: doing research in the right way.
• We want to make sure that the priorities and needs of the people who take part in clinical research, and the people who will be affected by the outcomes of the research, are central to how clinical research is done. This is described as being people-centred.

What is the ‘People-Centred Research Project’?

• The project aims to find ways to make people-centred clinical research happen more often.
• The project will be collecting evidence about how high quality, people-centred clinical research is done well; finding out what matters most, what ‘good’ looks like and what might be making it difficult.
• We will make some recommendations and suggest some approaches to help improve the way clinical research happens in the UK
• The project and the steering group are supported by a small project delivery team that includes members of the Health Research Authority and the University of Lincoln. The University of Lincoln is providing academic support for the project.

What is the activity?

We are looking for eight people with lived experience of clinical research to join a steering group with eight researchers. You’ll help us decide what work this project undertakes and provide insights on:

• how we should talk about people-centred ways of delivering clinical research and what this means
• how we look for and find evidence
• questions we could ask in focus groups or surveys
• how we know if research is people-centred
• who we should connect with to bring more diverse voices into our conversations
• how we can ensure that we hear from people who are not traditionally included in clinical research
• how we should report on our findings

You’ll also help us to:

• interpret the information we collect and understand what it means
• publicise our findings and co-author reports and papers about this work
• shape our recommendations to the UK health research sector
• ensure the project stays true to its aims of being a people-centred project
• oversee project's progress

What will be involved?

On 23 June from 1 to 3pm, join HRA staff and other members of the steering group for an initial online (Zoom) workshop to help us get to know each other and understand the work that the HRA has done so far on this project.

Take part in at least eight two-hour online steering group meetings running between June 2022 and March 2023.

Captions will be enabled for all Zoom meetings

You'll be asked to read materials and to provide your comments, thoughts, and insights between meetings

Two co-chairs will be appointed to lead the meetings. We hope one will be a public contributor and the other will be a researcher.

There are some things we already know we need your insights and support with but we may identify more areas where public involvement would add value. The steering group will consider and discuss these, but you'll only be involved in any further work if you would like to be. We plan to recruit enough people to the group to make it easy to share the work, so no individual feels that they should take on more work than they are comfortable with.

What difference will I make?

We'll have explored what people-centred research is, and what we can do to help researchers to ensure they are able to keep people at the centre of their work.

We'll have collected examples of research that we think everyone will agree is people centred.

We'll write a report together, to share what we have learned with the whole of the UK research community.

We'll work together to find inclusive ways of sharing our findings with people who could become involved in research in the future.

What support will I receive?

We have a small team at the HRA who will support your involvement throughout this project.

If you would like a short conversation with a member of the project team or the HRA Public Involvement Team before a meeting, then we can arrange that.

We recognise that drawing on our lived experiences of research can be difficult. Barbara Molony-Oates, Public Involvement Manager, will be available for an informal conversation for 30 minutes after each meeting if anything has come up for you.

We'll send you information about all the meetings in advance by email.

If you have any access needs you would like us to be aware of, please let us know. Meetings over one hour will have a scheduled 10-minute break.

What skills or experience do I need to take part in this opportunity?

You'll be asked to contribute your views based solely upon your own lived experience. We think it is important that:

• you have some experience of clinical or health and care research (either as a participant, a public contributor, a carer of someone who has taken part, or as a member of the research team)
• you are comfortable taking part in remote meetings and reading documents. We can provide IT support and equipment if you need it.
• you are interested in shaping and improving clinical research
• you are not expected to represent anyone other than yourself during the meetings. However if you have links to diverse community groups or networks of people underserved by clinical research, we would welcome your help to reach out more widely to inform our work
• you will be able to read project related documents before the meetings
• you can give feedback on meeting notes as required and provide input into any specific activities or questions
• you can reflect upon and contribute to any report or communication about the work or on the experience of your involvement in this project.
• you can contribute opinions by email in between meetings

We are particularly interested in hearing from people with links to diverse communities and people with experience of serving under represented communities.

Co-chairs

Two people are invited to apply to be co-chairs and lead the meetings.

Ideally, we would like the co-chairs to be one public contributor and one member of the clinical research community.

Co-chairs will need to:

• work together to keep the group to time and ensure all the items on the agenda are discussed appropriately
• be prepared to meet in advance of meetings to discuss the agenda
• be comfortable with groups of people and able to ensure that everyone is heard
• flag any issues or concerns to the project delivery team.

Co-chairs will be supported by the project delivery team and invited to meet virtually in advance of each meeting to plan the agenda. This should take no more than one extra hour per meeting.

How do I apply?

To apply to be a member of the steering group, please email public.involvement@hra.nhs.uk by noon on 6 June 2022

In no more than 300 words, please let us know why you would like to get involved and how you meet the criteria above.

Please use 'people-centred clinical research' in the email subject line.

How do I apply to be a co-chair?

If you would like to apply to be the co-chair, please let us know, and explain why you would be suitable for this role.

Will I receive payment?

Yes. In line with our policy, we can offer a fee of £75 per meeting to cover preparation, taking part in the meeting and feeding back on the notes.

Co-chairing is expected to take no more than one extra hour of time for which an extra payment of £20 will be made to the co-chair who is a public contributor

Additional work undertaken by the steering group members as requested by us will be reimbursed at a rate of £20 per hour.

Will my expenses be covered?

Yes. You won't need to travel but if you have any other expenses (for example, internet charges), we will cover all reasonable expenses. We offer £5 to cover any incidental expenses for attending online meetings.

Who do I contact for further information?

Please contact our Public Involvement team at Public.Involvement@hra.nhs.uk or call 0207 104 8110 if you have any questions.