Help shape resources for people deciding whether to take part in health and social care research
We want everyone to have all the information that they need when they are deciding whether or not to take part in health and social care research.
We're working on new resources that will make sure that people have a clear understanding of how they can expect to be treated in research and the safeguards in place to ensure this is the case.
These resources are separate from the participant information you would receive when deciding whether to take part in a research study. Instead, it focuses on the wider expectations, rights and responsibilities that apply across health and social care research, helping people understand how they should be treated throughout their research journey.
Background
We're doing this in response to recommendations from a workshop informed by the Infected Blood Inquiry.
The recommendations asked the Health Research Authority (HRA) to develop a user-friendly explanation of the rights and responsibilities of people taking part in health and social care research, including what participants can expect and how concerns can be raised and responded to.
What’s the activity
To help us to do this project well, and consider different needs and perspectives, we will establish an advisory group who will play a central role in guiding this work.
The advisory group will be made up of 10 members in total including members of Research Ethics Committees, representatives from medical research charities and the pharmaceutical industry.
We are looking for three public contributors to join the advisory group. One of these contributors will also co-facilitate the group.
As part of the group, you may be asked to:
- help us understand what information already exists and what might be missing
- share your views on early ideas and help us decide what would be most useful for patients and participants
- review draft recommendations and resources to make sure they are clear, helpful and meet people’s needs
Members of the advisory group will be invited to share their views on emerging findings from the HRA’s public consultation and provide advice on approaches to community engagement and co-production. The advisory group will help shape the development of resources, ensuring they are accessible and useful for people deciding whether to take part in health and social care research.
You do not need to be an expert in research. We are looking for people who can bring their own views and experiences and take part in open, respectful discussion.
The advisory group will meet online three times between November 2026 and April 2027.
We can offer expenses and honoraria, including £82.50 for each advisory group meeting and related preparation and follow up.
What will be involved?
The activity will involve:
- preparing for the 90-minute advisory group meetings by reading the advisory group meeting agenda and detailed briefing and background documents
- attending briefings with Kirsty Edwards, Policy Manager and the other members of the public supporting this work
- engaging in 3 meetings of the advisory group online. The meetings will take place on Zoom, last 90 minutes, with a 10 minute break and may include breakout groups to support active engagement
- attending a meeting to exchange feedback on your involvement after the 3 advisory group meetings
What difference will my involvement make?
By sharing your views and experiences, you will help us understand what information people need, what might be confusing or missing, and how the resources can be made easier to understand, use and access.
We will let you know how your input has influenced the project. This may include updates during advisory group meetings.
What skills or experience do I need to take part?
- you must live in the UK, have an interest in, or experience of, health and social care research and be able to contribute a public perspective to the advisory group. You do not need any specialist knowledge or expertise in research.
- you should be able to advise on what makes it easier and harder for people from different backgrounds, and with different experiences, to find out about their rights and responsibilities in research and act on these, including raising a concern. For example, you might be a champion or community connector who has supported people to find out about research; or a carer, parent or family member who has supported someone participating in research and found it challenging, confusing or burdensome.
- you should be able to prepare for and engage constructively in online meetings alongside people with different views, experience, and expertise. You will need to read complex documents in advance, join meetings using an appropriate place and technology to do this, with your camera switched on and ensuring the meeting is not heard by others. Please let us know if this might be a barrier for you.
- if you would like to co-facilitate the group, you will need experience of chairing or facilitating meetings or committees where people bring a range of different views, experiences, and expertise.
What support will I receive?
Your point of contact will be Kirsty Edwards, Policy Manager.
As set out in our ways of working, we’ll do our best to give you the information you need to take part. If you have any questions about the activity, please feel free to contact Kirsty - she's here to help.
We’ll ask about any access needs or support requirements, including requests for reasonable adjustments. If there are adjustments we can’t make, we will explain why and work with you to identify alternative support where possible.
While we’ll do our best to facilitate your involvement, our staff aren’t in a position to provide personal support or advice that is not related to the role or opportunity.
If your circumstances change, please get in touch with your point of contact.
How do I apply?
Please provide your answers to the questions in our online form by 9 October 2026
If you experience any problem using the form or would prefer to submit your answers in a different format, please email the public involvement team using ‘online form’ in the email subject line or call us on 020 7104 8161.
How will you decide who will be involved?
We’ll remove your name from your application and shortlist people who have met the criteria above. We will select people to bring together a wide range of experience alongside other members of the advisory group. We will arrange a short online meeting to discuss the activity with you, and check it’s the right fit.
Will I receive payment?
Yes. In line with our payments policy, we can offer:
- £82.50 for attending advisory group meetings, including related preparation and follow up
- £27.50 for attending short pre-advisory group meetings
- £27.50 for short tasks between meetings e.g. reading and commenting on a version of the resources
- an additional £55 per meeting for the co-facilitator, to include briefing and debriefing
Payments are offered in recognition of your contribution to shaping the HRA’s work and do not create an employment contract. We cannot pay for time already funded by another organisation (for example, NHS or university). Participation and acceptance of payment are entirely your choice.
Will my expenses be covered?
Yes. It is our policy to cover reasonable expenses, if agreed in advance. For example, additional childcare or for a carer or personal assistant. We offer a £5 contribution towards any incidental expenses incurred by attending online meetings.