Research studies that take place over many years (also known as longitudinal studies) provide researchers with valuable information which helps improve health and social care for patients.
At the start of any long-term research project those taking part give their consent to take part in the study.
These studies can take place over years or even decades, and this means that it is likely a participant’s health would change over the course of the study and potentially impact on their ability to consent to take part.
We want to better understand what researchers need to consider when this happens.
How you can help us
We are working alongside Genomics England and Our Future Health to design and organise an in-person event with people interested and affected by this issue.
We are looking for two people to help us to plan the event, and attend a roundtable conversation.
We hope to hold the event in autumn 2023.
What will the event focus on?
The event will focus on finding out what is important to people involved in long-term research and how we can earn and build their trust in how they will be treated if their ability to consent changes.
We will also discuss what is currently required by law and what happens in practice.
Part of your role will be to help us decide who should be at the event.
What will your role be?
You will be asked to attend a monthly working group meeting on Zoom. We will send you information about all the meetings in advance by email. These meetings will last 50 minutes.
You will be asked to read materials and to provide your comments, thoughts and insights between these monthly meetings and communicate via email.
Meetings over one hour will have a scheduled 10 minute break.
If you are selected, we will invite you to share your access and support needs and any reasonable adjustments required. We will keep this information confidential.
Will I receive payment?
We can offer a fee of £50 per meeting to cover preparation, taking part in the meeting and feeding back on the notes.
Additional work undertaken by group members requested by us will be reimbursed according to our payments policy.
Will my expenses be covered?
Yes, you will need to travel to the event so we will cover all reasonable expenses. We offer £5 to cover any incidental expenses for attending online meetings.
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 conversation with a member of the project team or the HRA Public Involvement Team before you apply you can contact Kirsty Edwards or Damilola Odunlami by emailing Public.Involvement@hra.nhs.uk
What skills or experience do I need to take part?
We think it is important that you meet these criteria. Please tell us how:
- you have a good understanding of what longitudinal research is and why it is important or you have experience of being a research participant in a longitudinal research study
- you or someone you care for has a health condition that impacts their ability to give informed consent. Your experiences would bring valuable insights to this work and help us to improve understanding and trust between researchers and participants
- you have an understanding about the role of the HRA in supporting research in the health and social care research system in the UK
- you are interested in improving health and social care research
- you have experience of taking part in group discussions
- you are comfortable taking part in virtual workshops over Zoom and will be able to attend the in-person event
How you can apply to get involved
To apply please email Public.Involvement@hra.nhs.uk by noon on 5 June 2023. Please use ‘Trust and consent in research’ in the email subject line.
In your email please tell us how you feel you meet the role criteria.
You can do this by completing our short application form or by sending in a voice recording or video of up to three minutes.
If you have any questions, or anything is unclear, you can call the Public Involvement Team on 0207 104 8161.
How will we decide who will be involved?
We will remove your name from your application. Three members of HRA staff will score what you have written against the criteria. We will use these scores to draw up a shortlist for the group. We will use this to bring together a group with a diverse range of experience that this work needs.
Useful background information
The legal and ethical implications of longitudinal research
Researchers have an ethical and legal obligation to make sure that people volunteering for research projects have the information they need to help them decide whether they wish to take part or not.
For consent to be legal and ethical it must be:
- given by a person with who is able to understand clearly what they are agreeing to
- given voluntarily, with no pressure from anyone else
- given by someone who has been informed clearly and sufficiently
- a fair choice
Longitudinal research studies involve data collection from potentially different sources (for example patient health records) over a long period of time. If a person’s health changes while they are taking part in a longitudinal research project this can cause issues because consent must be given by a person with capacity as set out in the Mental Capacity Act 2005.
Who are Genomics England and Our Future Health?
We are working alongside Genomics England and Our Future Health on this project. Both organisations are directly involved in long-term research and want to work with the HRA to better understand consent and trust in research.
Genomics England helps researchers to find the causes of diseases and develop new treatments. Patients and participants are at the heart of all their work. Their projects include the 100,000 genomes project and Diverse Data.
Find out more about Genomics England.
Charities and other organisations are working together with people on Our Future Health, the UK’s largest health research programme hoping to find new ways to prevent, detect and treat disease. The project hopes to involve five million volunteers, collecting multiple sources of health information including genetic data. This database of health information will help researchers discover new ways to prevent, detect and treat diseases.