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Patients, Carers and the Public

Are you a patient, carer or member of the public who wants to get involved in research? Below are a number of ways you can!

Be Part of Research

 

Be Part of Research is a service that makes it easy for the public to learn about and search for research studies. Discover how research studies are designed, what happens when you decide to take part and the importance of taking part. You can:
● Use the search tool to find current research studies happening right now
● Find studies taking place near you
● Filter results easily by age, health condition etc
● Use the site on desktop or mobile
● Download, save or print the full study details so you can talk to your doctor, nurse or healthcare professional.
Once you’ve found a study, you can see all the details including who to contact and ask to take part.

Whether you have been diagnosed with a condition or not, everyone can take part in research.

Interested in taking part in dementia research studies?

Register with Join Dementia Research so that you can be told when a study starts in your area and the researchers are looking for people just like you. There's no obligation to take part in any study, but by registering, you’ll find out when new opportunities become available. The service is delivered in partnership by the NIHR, Alzheimer’s Research UK, Alzheimer's Society and Alzheimer Scotland.

Accessibility statement

Read our Accessibility Statement.

Participant in Research Experience Survey

As part of improving the research experience of those who take part in research, we approach patients and their carers on an ongoing basis, asking them to tell us about their experience of taking part in a research study; both the good and the not so great.

PRES is now open all year round. We hope you will give trial participants the opportunity to give their feedback at the end of their trial, by asking them to complete the survey online or by giving them the paper survey.

The links to the four online surveys are below. Also below are details of how to access the four URL slips for each survey. For those who prefer to complete the survey online, these may be useful when it comes to informing participants of the short study title and study number (IRAS or CPMS) which must be added to each survey.

Your local raw data and results can now be viewed live on the PRES dashboard via the North Thames Open Data Platform (ODP) app

You need an ODP account to access the dashboard. If you do not have an ODP account, please create one using this link.

If you have any questions, please contact Christine Menzies: christine.menzies@nihr.ac.uk

The Participant in Research Experience Surveys are available below

Participants

Please click on the relevant link below to complete the survey online.  

You won’t be asked for your name or personal details and anything you say will be kept private and no one will know which answers are yours. 

Online survey for ADULTS and over 16s

Online survey for children 0-6 years old

Online survey for children 7-11 years old

Online survey for children 12-15 years old

For copies of the paper survey, the URL slips with the QR codes and for copies of the adults and children's poster, email Christine Menzies: christine.menzies@nihr.ac.uk 

Site staff should inform participants of the answers to the following three questions before participants complete the surveys:

  • Site name
  • Short study title
  • Study number (CPMS or IRAS)

Patient Stories

Graham

Graham Reeder, a former teacher in Southend, was experiencing symptoms such as swollen fingers and difficulty getting to sleep, before eventually being diagnosed with rheumatoid arthritis.

"Being on the trial was an amazing experience.  I can understand people having reservations but I am very much one of those types of people who knows that they (the staff) are giving them (the medication) to me because they know what they are doing, and I put a lot of trust in these people, as I hope parents put a lot of trust in me when I was teaching their children.”

Research Champions

Research Champions help to raise public awareness about research and help to address problems, such as the lack of diversity in research participants.

By talking about research in everyday places - GP surgeries, hospital waiting rooms, community groups, patient groups, social media and amongst family and friends - we aim to make sure that everybody knows what health and care research is, what it involves and why it matters.

The role of Research Champion is nationally-coordinated and the initiative aims to build a bigger and more diverse patient research community, to reduce barriers to research participation and to support the effective and efficient delivery of research.

Research Champions include patients, carers, members of the public, and people who have taken part in a research trial before, as well as those who haven’t. Something that they all have in common is that they are passionate about getting more people involved in research so that we can develop better care and treatment for everyone.

We are keen to recruit new Research Champions and are looking for all partner trusts across North Thames to put forward names of potential Research Champions. If you have someone in mind, please contact Christine Menzies, our PPIE Manager at christine.menzies@nihr.ac.uk 

To ensure the safety of our Research Champions we are currently developing a new remote Research Champions Induction and will be releasing details soon.

To learn more about being a Research Champion, you can watch a video featuring one of our Research Champions, below:

 Read a transcript of this video.

Have a look at these resources for Research Champions too:

and for further details, visit the national Research Champions page on the NIHR website.  

Each year, we approach patients and their carers, asking them to tell us about their experience of taking part in a research study; both the good, and the not so great.

The survey for 2020/21 is now live and patients who have participated in research can find links to complete the survey further down this page. 

We conduct this survey to look for ways to improve how clinical studies are delivered, and to make sure all patients have the best possible experience of being in a study. The information given is then used to understand what works best for patients, and where we can make helpful changes in the way we do things.

Last year

Last year, 2,972 responses were submitted from participants during the 14 weeks PRES 2019 was open between September and the end of December 2019. 

Some of the key highlights were:

  • 91% of the 2,304 of adult responders had a good experience of taking part in research.
  • In response to the question, “Were you aware your health provider conducted research before you were first offered the opportunity to take part in research”, 41% of adult responders were aware, this is an increase of 10% from the previous PRES.
  • Three sites in North Thames (Whittington Hospital, Southend Hospital and West Hertfordshire Hospital) had 100% of adult responders reporting a good experience of taking part in research.