Taking part in research: Bertie and Freddie's story
18 May 2023
Bertie tells us about his son Freddie's experience of taking part in the MAP-ME study
Patient and public involvement is key to all the health and care research that takes place in our region. Without people taking part in and contributing to research, new and better treatments and services would not become available.
There are many different ways to get involved in research, depending on your interests and time commitments.
Getting involved in research doesn’t always mean that you need to take part in a clinical trial. Health and care research can also be carried out by or with patients, carers and the public. Examples of this include:
Click on the tabs below to find out about different ways you can get involved.
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:
Once you’ve found a study, you can see all the details including who to contact to ask to take part.
Whether you have been diagnosed with a condition or not, everyone can take part in research. Find a study that’s right for you.
Register with Join Dementia Research to find out about new studies starting in your area. 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.
A Research Champion is a volunteer who promotes research in healthcare to other patients, members of the public, carers and to healthcare professionals. There’s no minimum ask or ongoing commitment, and you can do as much or as little as you like.
We currently have 17 active Research Champions in the North East and North Cumbria. Here are just some of the ways they get involved:
You can find out more on the Research Champions section of the NIHR website.
You can also contact nenccommunications@nihr.ac.uk if you are interested in becoming a Research Champion in the North East and North Cumbria.
If you have recently taken part in a research study, then we would like to hear from you!
The Participant in Research Experience Survey (PRES) is a short, anonymous, online questionnaire. It’s how we collect feedback from research participants to better understand their experience of taking part in research. Your answers will help us understand how we can make research experiences better for participants.
In October 2019, we launched a digital version of the survey which allows participants to complete the questionnaire either at the clinic with a member of the study team, or by themselves at home.
One of the benefits of the digital PRES app is that it gives researchers access to near real-time participant feedback. Patient and public feedback is valuable to us, and allows researchers to respond faster to any opportunities to improve your research experience.
The PRES app can be accessed on the My Research Experience website to be completed within your own time either by:
For further information about PRES, please consult our online leaflet.
Creating Connections is a regional network for anybody who is involved with or interested in patient and public involvement and engagement (PPIE). The group consists of people who have a role in PPIE in health and social care in the North East and North Cumbria region. They meet regularly to share best practice and learn from each other. Please contact nenccommunications@nihr.ac.uk if you would like to find out more about Creating Connections.
In 2021, Creating Connections hosted a series of training sessions aimed at anybody interested in PPIE in health and social care research, including members of the public and professionals. Recordings from these sessions have been uploaded to the VOICE platform, an online community of members of the public, patients and carers who contribute their unique individual experiences to improve research and innovation.
Follow these links to access the recordings and resources from these training sessions:
18 May 2023
Bertie tells us about his son Freddie's experience of taking part in the MAP-ME study
06 April 2023
Billie Clayton tells us about her experience of enrolling her daughter in the INGR1D2 study
25 February 2022
Sharon Dorgan is Senior Strategic Manager at NIHR Clinical Research Network North East and North Cumbria. Sharon is also Workforce Development Lead for the local network.
02 March 2021
Jan Lacouturier is a Vaccine Research Participant and Senior Research Associate at NIHR Policy research Unit in Behavioural Science
08 February 2021
“I have been involved in research for years and since becoming a Research Champion the role has widened my knowledge of research and how to promote research.”