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Patients, Carers and the Public

Health and social care research simply couldn’t happen without people volunteering their time and commitment, either to be part of a study or to promote research.

Work with us to change lives

Being involved in research doesn't always mean that you need to take part in a clinical trial or study. There are a number of ways you can support our work:

Be Part of Research

Be Part of Research is an online service that provides an opportunity to help members of the public understand what research is and what it might mean to take part, as well as showing what research is currently happening across the UK.

You can use the search tool to look for current UK research investigating illnesses or conditions that are of interest to you, or to find studies that may be taking place near to where you live.

For example, if you’re looking to take part in social care research, you can use the search bar to find relevant research studies currently looking for volunteers across the UK.

Once you’ve found a study, you can see all the details including who to contact so you can ask to take part. You can also download, save or print the full study details so you can talk to your doctor, nurse or healthcare professional.

Patient Stories

Research Champions

We have an active community of Research Champions across the region - volunteers who are enthusiastic about health research, and share their experiences with members of the public to help us to promote other ways people can be involved.

They do this by:

  • Attending health awareness day events
  • Talking to friends and family about health research
  • Being interviewed by the media
  • Supporting our engagement teams to raise awareness

Research Champions are hosted by an individual NHS organisation, typically a hospital. These organisations will also support their Research Champions by providing training and mentoring.

If you are interested in becoming a Research Champion or finding out more, then get in touch with us at

Meet our Research Champions

Read why patients and members of the public from across Kent, Surrey and Sussex have become Research Champions.  

Simon's story.

Laurence's story.

Dave's story. 

Participant in Research Experience Survey

The Participant Research Experience Survey 2022/2023 in Kent, Surrey and Sussex

What is it like taking part in health and care research in Kent, Surrey and Sussex?

What is the Participant in Research Experience Survey (PRES) and why is it important?

The Participant in Research Experience Survey (PRES) is a survey given to people who have taken part in NIHR health and care research to find out what their experience is like.

We share the results of the survey with people and organisations who deliver research, and together we look at ways to make experiences better for everyone.

We also use the results to tell people about the benefits of taking part in research, to encourage more people to get involved.

Kent, Surrey and Sussex PRES 2021/2022 Headlines

Between 1 April 2022 and 31 March 2023, 2,400 people completed the PRES survey. This is about 13% of people who took part in NIHR health and care research in Kent, Surrey and Sussex over this period. All of our 18 partner organisations are committed to using PRES in their delivery of health and care research. PRES is now also being embedded into ways of working in wider health and care settings, with over 100 responses being from these ‘out of NHS’ settings.

Responses represented all 29 specialities.

What do people tell us about their experiences?
  • 93% said that the information they received before taking part prepared them for their experience

  • 82% said that they have been kept updated about the research

  • 65% knew how they would receive the results of the study

  • 84% knew how to contact someone from the team

  • 97% felt valued by the research team

  • 98% felt that the research staff treated them with courtesy and respect

  • 97% would take part in research again

How long have participants been taking part and is it their first research experience?
  • For 80% of participants, this was their first time participating in research.
  • For 20% of participants, this was not their first time participating in research.

What is good about taking part?

The PRES asks people to share reflections on what was positive about their experience. These have been brought together in themes:

  • 29% Interaction with research team/staff
    20% Being part of something useful/giving back (altruistic)
    14% Benefit to self – access to treatment/knowledge of condition
    15% Well organised/on time
    24% Good communication/kept updated

“I was always treated as an important patient and made to feel my progress was being carefully monitored and recorded.  I have had several telephone calls from medical staff checking up and measuring me and always with great courtesy.”

What could be better?
  • 31% of comments were about logistics and arrangements. This could be problems with parking, finding the right place in a hospital, and having different options for appointment times and formats of information.
  • 16% of comments were about getting information on the results of the research
  • 23% of comments were about getting updates during the research, for example about how it’s going.
  • 16% of comments were about a mismatch between what people expected the research to be like, and what it was really like.
  • This could be to do with the number of appointments, or how long the research would take.

““Dedicated space for the research team. Some appointments had to move half way through.”

 What are we doing to make things better?
  • We will work with our partners to look for ways to make sure that everyone has the opportunity to tell us what their experience was like.
  • We will support our partners to develop local plans to make experiences better.
  • We will work with our partners and other organisations to ensure that people who take part in research are informed and updated about the research that they take part in.

How do our results compare nationally?

Where are we performing well?

Our participants in Kent, Surrey and Sussex:

  • Feel better updated about the study they are taking part in (5% higher score than nationally)
  • Feel more valued by the research teams (6% higher)
  • Are more likely to feel treated with courtesy and respect (3% higher)
  • Are more likely to say they will take part in research again (6% higher)
Where do we need to improve?

9% fewer of our participants know how they will receive the results of the study they are taking part in

Have you taken part in health and care research?

Would you like to share your experiences with us? If you would, please get in touch with our PRES lead Madeline Bell

If you live in Kent, Surrey and Sussex and have taken part in a research study please email for a form, or online link.

Join Dementia Research

Join Dementia Research is a national service that makes it easy for anyone to take part in vital dementia research studies. People with dementia or memory problems, their carers and anyone who is interested can sign up.

Simply register your details and a researcher will be in touch when an appropriate study becomes available. You can decide whether to take part in individual studies, with no obligation.