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Patients, Carers and the Public

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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.

You can be involved in different ways

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:

  • providing advice and guidance to a 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 (see the Lawnmowers Learning Disability Research Support Group as an example)

Click on the tabs below to find out about different ways you can get involved. 

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 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.

Interested in taking part in dementia research studies?

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.

Research Champions

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 14 active Research Champions in the North East and North Cumbria. Here are just some of the ways they get involved:

  • participate in bi-monthly virtual development meetings, allowing the group to give feedback to researchers and stakeholders
  • virtual event planning, such as this care home research event in partnership with NIHR Clinical Research Network Yorkshire and Humber
  • Twitter training to empower the group to use social media to promote research opportunities
  • contribute to case studies on their work
  • producing videos about their work (example below)
  • give public and patient perspectives at regional meetings

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.

PRES (Participant in Research Experience Survey)

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.

How to use PRES

The PRES app can be accessed on the My Research Experience website to be completed within your own time either by:

  1.  Receiving a survey code from your researcher. Select ‘I have a survey code’ and enter it to begin the survey.
  2.  Opening a unique link sent directly to your email address from your researcher to launch the survey.
  3.  If the study team has a device available, your researcher can launch the survey on the device and hand it to you to complete there and then in the clinic.

Further information and resources

For further information about PRES, please consult our online leaflet.

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