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Patients, Carers and the Public

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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 crnkentsurreysussex@nihr.ac.uk.

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.

Gillian's story.

Sue's story. 

 

Participant in Research Experience Survey

The Patient Research Experience Survey 2021/2022 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 2021 and 31 March 2022, 2,080 people completed the PRES survey. This is about 12% of people who took part in NIHR health and care research in Kent, Surrey and Sussex over this period. The proportion of participants completing the PRES has increased by 166% since the previous year.

  • 29% of PRES responses came from cancer studies.
  • 25% of PRES responses came from infection studies.
  • 7% of PRES responses came from cardiovascular studies.
What do people tell us about their experiences?
  • 90% of respondents said the information they received before taking part prepared them for their
    experience on the study.
  • 67% of respondents said they felt that had been kept updated about the research.
  • 74% of respondents said they knew how they would receive the results of the research.
  • 87% of respondents said they know how to contact someone from the research team if they have any questions or concerns.
  • 91% of respondents said that research staff valued their taking part in the research.
  • 97% of respondents said that research staff have always treated them with courtesy and respect.
  • 91% of respondents would consider taking part in research again.
How long have participants been taking part and is it their first research experience?
  • For 86% of participants, this was their first time participating in research.
  • For 14% 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:

  • Interaction with research team/staff (30%)
  • Being part of something useful and giving back (altruistic) (27%)
  • Benefit to self – access to treatment and knowledge of condition (20%)
  • Well organised and on time (14%)
  • Good communication, or being kept updated about the study (13%)

“The care from the staff from the start until present has been beyond what I would’ve expected. I’ve always been kept informed about any changes to the study and I am clear from eczema after 45 years.”

“The person who contacted me was friendly, bubbly and polite which really helped put me at ease. I really feel privileged to be able to participate in research that could make positive changes in the future.”

What could be better?
  • 36% 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.
  • 22% of comments were about receiving information on the results of the research.
  • 21% of comments were about receiving updates during the research, for example about how it’s going.
  • 14% 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.
  • 8% of comments mentioned problems because of COVID. For example, not being able to see staff in person, or appointments being changed.

“An appointment by appointment outline - what to expect to happen & how long.”

“I would have preferred to have the blood test and collect the next batch of patches on the same day.”

 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.

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 madeline.bell1@nhs.net.

If you live in Kent, Surrey and Sussex and have taken part in a research study please email crnkentsurreysussex@nihr.ac.uk 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. 

If you would like some help registering on Join Dementia Research, please complete this form and someone from one of our charity partner helpdesks will call you back about Join Dementia Research. They usually call you back within ten working days and three attempts to contact you will be made.