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Patients, Carers and the Public

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We are proud to say that clinical research takes place in all hospital trusts across the region and patient and public involvement is key to all the research that takes place. New and better treatments and services become available because people take part in health and social research.

You can be involved in different ways

There are many different opportunities to take part in research, depending on your time commitments, and there are several ways to get involved.

Getting involved in research doesn’t always mean that you need to take part in a clinical trial. Clinical Research can also be carried out by, or with help from patients, carers and the public. Examples of this include:

  • providing advice and guidance to a clinical research study as a member of a project steering group
  • assisting healthcare professionals to develop research materials which might include patient and participant information sheets
  • identifying new topics for research and ensuring that topics are relevant to patients, carers and members of the public
  • making sure that researchers ask the right questions and in a way that the public understand, like the Lawnmowers Learning Disability Research Support Group

To find out about the different opportunities you can get involved with, use the red tabs below.

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. Find a study that’s right for you.

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.

Research Champions

A Research Champion is a volunteer who wants to promote 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, depending on how much time you have available.

We currently have 10 active Research Champions in the North East and North Cumbria. These are just some of the opportunities: 

  • Participate in bi-monthly virtual development meetings, allowing the group to give feedback to researchers and stakeholders.
  • Virtual event planning, including a recent Care Home research event in partnership with NIHR Clinical Research Network Yorkshire and Humberside.
  • Twitter training to enable the group to use personal twitter accounts to promote research opportunities. 
  • Share case studies on their work.
  • Produced a video for the Creating Connections group on their role as Research Champions (watch below). This video was also used in a recent Integrated Care System regional research event with over 150 delegates. 

Check out the Research Champions section of the NIHR website take a look at some of the things you may get involved in as a Research Champion.

You can also contact nenccommunications@nihr.ac.uk if you'd like to learn how you can become a Research Champion within the North East and North Cumbria.

PRES (Participant in Research Experience Survey)

The Participant in Research Experience Survey (PRES) is how we collect feedback from research participants to better understand their experience of taking part in research. 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. This allows them to respond faster to any opportunities to improve participants’ research experience.

How to use PRES

The PRES app can be accessed on the My Research Experience website. Once a researcher signs into the PRES app and selects the relevant study, site and survey form, they are given three options:

  • Load Survey Form: This brings up the survey on the researcher's device and allows the participant to complete the survey straight away. 
  • Create Survey Code: This generates a survey code which the researcher can write on a card and give to the participant. The participant can enter the code on the PRES website and complete the survey at home in their own time. We provide PRES cards for this purpose. Please email nenccommunications@nihr.ac.uk if you would like to order some. 
  • Email Survey Link: The researcher enters the participant's email address and a unique survey link is emailed to the participant directly. The participant clicks on the link to launch the survey.

If you have a large study with many participants who would like to complete PRES, we also offer the following options:

  • Batch Email Links: We can arrange to send unique survey links to ten or more participants via email. The participants must all be on the same study, at the same site and using the same survey form. Please send the list of email addresses, study ID, site and survey name to nuth.nencpres@nhs.net to arrange this option.
  • Create a Prefab Link: We can create a prefabricated link that leads directly to a study-, site– and survey-specific form. You can then email the link to as many participants on that study and at that site as you wish. This option allows you to personalise emails to participants; however, care must be taken to blind copy (bcc) participants into any batch emails you send for data protection purposes. Please email nencbusinessintelligence@nihr.ac.uk to discuss this option.

Click the link to view the results from the 2022/23 Participant in Research Experience Survey. 

Further information and resources

For further information about PRES, please consult our FAQ page and view the 2022/23 PRES questions. If you are a Principal Investigator interested in introducing PRES for your study, take a look at our PRES Toolkit for Principal Investigators. For full instructions on how to use the PRES app, please consult our user guide. If would like to use the survey for your study, please email nenccommunications@nihr.ac.uk.

Creating Connections

 

 

 

 

 

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: 

Patient Stories