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Patient And Public Involvement at the Southampton Clinical Trials Unit

About PPI

Our PPI strategy

Current opportunities

Widening Participation Project

Southern Cancer Trials PPI Group

Helpful Resources

In April 2022, we set out our three-year strategy for patient public involvement (PPI) at the Southampton Clinical Trials Unit. Find out more on the Our PPI Strategy page.

About PPI

Patient and Public Involvement (PPI) is incredibly important to the work we do at the Southampton Clinical Trial Unit.

Trials of new treatments and clinical interventions rely on patients, carers or even healthy volunteers agreeing to take part in research and it is therefore vital that we make sure the patient voice is represented in everything we do.

The National Institute for Health and Care Research (NIHR) defines public involvement in research as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.”

As a unit, we invite PPI representatives to sit on all our trial management and oversight groups. These representatives will give feedback and input into all sorts of decisions, from how a trial should be run, to whether the trial is asking too much of participants, and whether patient information leaflets and consent forms are understandable.

The Southampton Clinical Trials Unit is also part of the Wessex Public Involvement Network (Wessex PIN), a network of staff and public members working together to improve how the public are involved in research.

Our resources page has information and links to websites where you can find out more about PPI and what is involved in becoming a PPI contributor. There are also resources for researchers and research delivery teams who are looking to improve PPI in their projects.

Join our PPI mailing list

If you would like to join our PPI mailing list for updates on new PPI opportunities and to receive our quarterly newsletter, please click the link above to send us an email request.

Getting Involved in PPI

For Patient Participation Week in June 2021, PPI contributor Sheila Stranks told us about why she decided to get involved in PPI and the contributions she makes to several trials at the SCTU.

Read Sheila's blog here.

The SCTU’s PPI coordinator Liz Allaway also wrote about her work in public engagement and involvement with research for the University of Southampton's "Engaged Medicine" blog.

Read Liz's blog here.

Contact us

If you are a patient, family member or carer and are interested in getting involved in PPI, would like to find out more about being a public contributor, or would like to be added to the distribution list for the SCTU newsletter and upcoming PPI opportunities, please get in touch.

PPI Coordinator:

Liz Allaway

Email: l.allaway@soton.ac.uk

Join our PPI mailing list

In April 2022, we set out our three-year strategy for patient public involvement (PPI) at the Southampton Clinical Trials Unit.

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

Our Vision:

Placing patients and the public at the centre of our trials: To include patient and public involvement (PPI) in all areas of clinical trial design, set-up, governance and dissemination at the Southampton Clinical Trials Unit (SCTU). To ensure that all PPI is meaningful, impactful, appropriate, and inclusive.

Timescale:

The document sets out our strategy to April 2025, outlining our goals for the short term (one year) and medium to long term (two to three years), as well as identifying successful outcomes and achievements. This strategy will be reviewed regularly to ensure we are meeting our goals, updating them and rescrutinising where needed.

Key Priorities:

We have used the UK Standards for Public Involvement in Research to establish the key priorities for our PPI strategy.

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

Our current involvement opportunities

Are you interested in COPD and respiratory health?

We’re looking for 2 public contributors with personal experience of COPD or other respiratory conditions, or a family member/carer of someone with the condition, to join the mySmartCOPD team and help us research a new smartphone app for patients.

Training and support will be given and you will be reimbursed for your time in line with NIHR guidelines and the SCTU PPI Payment Policy.

If you are interested in these roles or have any questions, please see the full PPI advert or the mysmartCOPD team at mysmartcopd@soton.ac.uk.

Widening participation in patient and public involvement (PPI) for trials being conducted at Southampton Clinical Trials Unit: A Community Study

Participant Information Sheet Get involved in the discussion Take the online survey

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 one-to-one interview, please fill in this form to register your interest and one of our team will get back to you.

If you 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 August 2023 and respondants will have the option to be entered into a prize draw to win one of two £25 shopping vouchers.

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.

Are you a cancer patient, carer, family member or simply interested in cancer research?

We are currently looking for public contributors to join the Southern Cancer Trials Public Involvement Group and help shape the future of our cancer research and clinical trials into new cancer treatments.

If you would like to find out more, please contact Kerry Fitzpatrick (Senior CRUK Research Nurse) - K.J.Gready@soton.ac.uk or Liz Allaway (PPI coordinator for the SCTU) - L.Allaway@soton.ac.uk

PPI group flyer