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Patients, Carers and the Public

Every day thousands of patients, carers and the public go the extra mile to help the NIHR make research happen. There are many ways you can join in and be part of research. 

Would you like to get involved in health and care research?

Every minute in the UK, someone is diagnosed with a disease or condition. The treatment and support they will receive will, at some point, have been informed by research. Whether it's testing a new medicine, a new surgery procedure or scan, or trying healthier lifestyle choices to prevent disease, everyone has an important role to play - if they want to. 

There are lots of different types of research. Research usually involves examining and observing people with different conditions and sometimes comparing them with people who don't have the condition. It can also involve research on samples of blood or other tissues, or tests such as scans or X-rays. Sometimes it might involve surveys or interviews. 

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 the condition or not, everyone can take part in research. Find a study that's right for you. 

Find studies in: 

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

Research Champions are people who volunteer their time to help spread the word about health and care research to patients and the public, and especially to those groups who are currently less likely to take part in research. They also help research and healthcare staff understand more about the experiences of those who take part in research. 

What can Research Champions do?

The role of a Research Champion can vary depending on the interests, skills and time of the volunteer. Some commit to regular activities, while others may volunteer as opportunities arise. Research champions may volunteer to get involved in:

  • Talking to patients and the public about health and care research e.g. by giving talks, hosting coffee mornings, visiting health services
  • Raising awareness amongst friends and family about research and being a champion
  • Promoting the Be Part of Research campaign to patients and helping people to find out about the research studies they can take part in 
  • Promoting the Join Dementia Research website and the importance of dementia research to the public 
  • Visiting local health and care organisations to tell people about health and care research and encouraging them to engage with local research teams 
  • Taking part in local actions to mark International Clinical Trials Day and health awareness days
  • Writing about their experiences of participating in health and care research to share with the NIHR or other platforms
  • Speaking to interest or patient groups about health and care research

How can I get involved?

If you are interested in becoming a Research Champion or finding out more, then get in touch with the team at ppie.crnyorkshumber@nihr.ac.uk.

 

Participant in Research Experience Survey (PRES)

The PRES is a set of questions that we conduct in collaboration with our partner organisations to understand and evaluate the experience of people taking part in research. The questionnaire is conducted every year to help us to understand more about the experience of clinical research patients across our region. All responses are anonymous.

The results help us to identify positive patient experiences, as well as highlight areas for development and improvement.  

Our 2019/20 survey is currently underway.

Last year's results

 We had responses from 630 research participants - that's 26% more than the year before! Of those surveyed, 82% said they had a good experience of participating in research.

Contact us

If you have any queries regarding the PRES, contact Evie Chandler via ppie.crnyorkshumber@nihr.ac.uk or on 0113 206 0467

Find out more at www.joindementiaresearch.nihr.ac.uk

Join Dementia Research 

Dementia is one of the biggest challenges we face today. The number of people with Alzheimer's disease, vascular dementia, and other types of dementia is set to double over the next 30 years. Research offers hope. It is only through research that we can understand what causes the disease and develop effective treatments, improve care and one day find a cure. 

Join Dementia Research is a service which allows people to register their interest in participating in dementia research and be matched to suitable studies. The service delivers new opportunities for people to play their part in beating dementia, connecting researchers with people who want to participate in studies.

To find out more about how you can get involved in dementia research, and to register to be part of the service, visit the Join Dementia Research website.