Patient And Public Involvement at the Southampton Clinical Trials Unit

Read the full strategy: Southampton Clinical Trials Unit Patient and Public Involvement Strategy – 2022-2025

Do you have experience of mesothelioma?

We’re looking for a public contributor with personal experience of mesothelioma, or a family member of someone with the disease, to join our mesothelioma portfolio and help advise our research teams.

Initially they will sit on the Trial Management Group (TMG) for the NERO trial. This trial is already running and the role will involve:

• Meeting approximately every three months via a video call (may meet more regularly if required).
• Reading and reviewing documents prior to meetings.
• Provide a patient insight into any issues that arise in the oversight of the trial, such as ensuring that the protocol is adhered to and being involved in discussions surrounding safeguarding subjects and the quality of the trial itself.

Once this trial ends there may be opportunities to move to other trials in the mesothelioma portfolio.

For more information, see the full PPI advert. If you are interested in this role or have any other questions, please email PPI coordinator Liz Allaway, L.Allaway@soton.ac.uk, or the NERO team on NERO@soton.ac.uk.

Are you a parent or carer whose child has had appendicitis?

We're looking for public contributors to join a trial looking at whether simple appendicitis in children can be safely treated with antibiotics instead of surgery.

The CONTRACT 2 trial needs a public member to join the Trial Management Group (TMG). In this role you will help the research team by giving a patient’s perspective to the way trials are run and by reviewing patient-facing documents, inclduing:

• Initially meeting once a month, with the possibility of reducing as the trial progresses
• Reading documents prior to meetings and providing an insight into any issues that arise in the oversight of the trial.

Training and support will be provided and you will be reimbursed for your time in line with NIHR guidelines.

For more information, see the full CONTRACT 2 PPI advert. If you are interested in this role or have any other questions, please email Liz Dixon, Senior Trial Manager or Jessica Kelly/Sophie Varkonyi-Clifford, Trial Managers, on contract@soton.ac.uk.

Could you help shape research into treatments for urinary tract and bladder cancer?

We're looking for two public contributors with personal experience of UTSCC or bladder cancer, or a family member of someone with the disease, to join our research team for the AURORA trial.

Role one is to sit on the Trial Management Group (TMG) and hlep to ensure the trial is meeting the requirements of the protocol and is acceptable to the patients taking part.

Role two is to be part of the Independent Data Monitoring Committee (IDMC) to help monitor patient safety and quality of life implications of the trial.

Training and support will be provided and you will be reimbursed for your time in line with NIHR guidelines.

For more information, see the full AURORA PPI advert and contact our PPI Coordinator, Liz Allaway - L.Allaway@soton.ac.uk.

Study background

Clinical trials of new medicines or health technologies rely on patients, carers or even healthy volunteers agreeing to take part in research and it is therefore vital that patients have a say in how this research is done. For this reason, patient and public involvement (PPI) is heavily embedded into research conducted at the Southampton Clinical Trials Unit. 

But we know that certain groups and communities are under-served by clinical research. We therefore need to ensure that PPI in the design and conduct of our trials is reflective of the whole population, to encourage more people from diverse backgrounds to take part in research.

The Southampton Clinical Trials Unit is conducting a study to better understand the barriers that prevent or dissuade people from under-served groups from taking part in Patient and Public Involvement (PPI) for clinical trials and learn how we can overcome these.

Our aim is to try and improve the diversity and inclusion of patient and public involvement in clinical trials research and make healthcare research better for everyone.

What are we doing?

We would like to speak to people who identify as being from under-served communities to explore what barriers may be preventing or dissuading people from getting involved.

We will do this through discussion groups/interviews and an online survey.

Using information and comments from the discussion groups and the survey, we then aim to co-produce resources that can be used by researchers to reduce these barriers when conducting PPI as part of their future research projects.

Would you like to be involved?

If you are interested in taking part in our study, please read the Participant Information Sheet for more details about what taking part involves.

If you would like to get involved in a disucssion group or one-to-one discussion, or are part of a community organisation or local group and would be able to host a discussion group where the study team can speak to people within your community, please contact project lead Liz Allaway, L.Allaway@soton.ac.uk.

We also have a digital survey where you can get involved online. Take the survey here. The survey will be open to responses until 31st May 2023.

If you would like to find out more about our clinical trials and PPI before taking part, there is lots more information on the About Us, News, and Patient and Public Involvement pages of this website.