This site is optimised for modern browsers. For the best experience, please use Google Chrome, Mozilla Firefox, or Microsoft Edge.

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.

The Participant in Research Experience Survey 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.

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 visit the ODP site to set up your account.

If you have any questions, please contact us: crn.norththames@nihr.ac.uk 

The online Participant in Research Experience Surveys for 2023/24 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 stick-and-fold copies of the survey, email ppie.crnnorththames@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)

CRN North Thames Participant in Research Experience Survey Summary Report 2022/23

Total number of responses submitted during 1st April 2021-31st March 2023

Total CRN Coordinating Centre (NIHR CRN CC) national adult responses: 30,705
Total national children and young people’s responses: 1,898

CRN North Thames PRES target: 1,650
CRN North Thames total responses: 2,905
CRN North Thames adult responses: 2,657
CRN North Thames children and young people’s responses: 248

When asked: What was positive about your experience?

A participant from Great Ormond Street Hospital For Children NHS Foundation Trust said: All aspects of the study explained to us. The care my child has received has been amazing throughout. we felt that should serious side effects arise, the team knew exactly what to do. My son was treated with respect throughout.  

A NOCLOR primary care participant said: Excellent information and valued the explanation provided by the research nurse.  

A Barts Health NHS Trust anaesthesia, perioperative medicine and pain management participant said: Can't praise the NHS staff enough, it gave me insight into what the research was trying to achieve. I have enormous respect for the NHS.  

View a full copy of the 2022/23 CRN North Thames PRES report here.

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 Chidi Onyejiaka, our PPIE Manager at chidimma.onyejiaka@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.

Have a look at these resources for Research Champions too:

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