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Patients, Carers and the Public

By taking part in research you can help the NHS, public health and social care find better ways to care for and treat people, making them healthier and happier for longer. Below are just some of the ways you can be a part of it in our region. 

Be Part of Research  is an online service which helps people understand what research is, what taking part might involve, as well as helping people find studies and volunteer to take part.

You can use the search tool to look for current UK research investigating illnesses or conditions that are of interest to you, or to find studies that may be taking place near to where you live.

Once you’ve found a study, you can see all the details including who to contact so you can ask to take part.  You can also download, save or print the full study details so you can talk to your doctor, nurse or healthcare professional.

Discover

Discover is a new health research register for North West London, designed to empower more patients and members of the public to take part in health research. 

If you live in North West London, then Discover is your opportunity to contribute to health research. Often people who want to contribute to this kind of research (whether they’re unwell or not) don’t know where to start or who to ask. Researchers have a similar problem – they want to improve healthcare, but sometimes can’t find people to participate in studies.

Discover is a way to bridge this gap, bringing the public and researchers together. It is a register of any adults (18 and over) living in North West London who are interested in health research and want to find out more about health research opportunities.Health research that you may be able to participate in can range from answering surveys, to having your blood tested, to testing new and innovative medical devices and phone apps and sometimes even participating in clinical trials.

Health research is vital to improving the quality of healthcare and people’s health. With your help, we can improve healthcare services in North West London and beyond, and find better ways to treat and prevent illness and disease.

To get started, join Discover today

 

 

Join Dementia Research

Join Dementia Research is a nationwide service, delivered in partnership with leading dementia charities, helping to accelerate vital dementia research in the UK.  

Working like a matchmaking service, simply register your details and a researcher will be in touch when an appropriate study becomes available.

People with dementia or memory problems, their carers and anyone who is interested can sign up. You can sign up online, over the phone or by post.

Once registered, you can decide if you would like to participate in the studies you match to on a case-by-case basis, with no obligation

We are also looking for Research Champions to help us promote Join Dementia Research in North West London. To find out more please visit the Research Champions page

 

If you would like to find out more about opportunities in North West London please email our Patient and Public Involvement Lead, Danielle Neal at danielle.neal@nihr.ac.uk or call 020 3313 4012.  

 

 

Clea's Story


Someone is told they have diabetes every two minutes in the UK. Clea St Jean, a Bed Manager at Imperial College Healthcare NHS Trust, knows exactly how shocking this diagnosis can be.

“I sort of froze for a minute”, Clea recalls. “I sat there trying to process this news”. She was diagnosed with type 1 diabetes.

Diabetes causes blood sugar levels to become too high. There are two main types, type 1 and type 2. There are some other rarer types too.

Clea was coping with her diagnosis and regularly checking in with her diabetes team. She was attending one of her appointments at Charing Cross Hospital, part of Imperial College Healthcare NHS Trust, when she was invited to take part in a research study. An offer she accepted.

The MY DIABETES study was set-up by Dr Shivani Misra. It looks at the differences between young people with diabetes in different UK ethnic groups. Dr Misra said: “The aim is to describe in detail the kinds of diabetes people have when they are diagnosed before the age of 30.” Initial findings show that definitions of type 1 diabetes don’t agree across ethnic groups, suggesting a need to change definitions.

The study involves taking regular blood tests. For Clea, this was originally once every three months but now once every six. This is not a major inconvenience, especially considering the benefits research can bring. “My thinking was that if I participated in this, and they found something, that it would assist someone else”, Clea said.

But taking part did more than help others. It identified the fact that Clea had been misdiagnosed. Blood tests revealed that she had a rare type of diabetes called MODY (maturity onset diabetes of the young). This type is inherited and caused by a gene mutation.

Clea’s clinics were transferred from Charing Cross Hospital to St Mary’s Hospital, where she received more specialised and appropriate care. Clea recognises how valuable her research experience has been in helping her to better understand her condition. She said, “My consultants would be treating me as a patient with type 1 diabetes, not knowing that is not just this that I've got, it's one of the rare types of diabetes.”

“It's life changing because that particular decision that I took, I know led me to finding the accurate diagnosis. And now I'm obviously going to get the right treatment.”

By taking part, Clea has allowed researchers to develop a better understanding of diagnosing diabetes accurately. This is important to ensure patients receive the appropriate treatment.

Clea is in no doubt that her decision to take part in research was the correct one for her. And she thinks others should take part too. “I would advise it definitely, 100% recommend it”, she said. “My team at Imperial College is amazing.”

“They know what they're doing, they know exactly how to help you. So it is it is amazing and I would recommend it to anyone”.

 

Greg's Story


Greg Farkas, from Leyton, East London, found himself at risk of contracting TB when his housemate tested positive for the infection. TB can spread easily from tiny droplets in coughs and sneezes. Greg was soon tested and thankfully received the all clear. But that wasn’t the end of his journey.

A research nurse from St Mary’s Hospital, part of Imperial College London NHS Trust, approached Greg to ask if he wanted to take part in a clinical trial. Testing negative for TB after being exposed to it made him an ideal candidate for a study looking at the risks if catching the infection.

The study, called Risk Stratification of Tuberculosis Infection, is supported by the Clinical Research Network North West London.

Greg agreed to take part and has had a positive experience so far. Greg said: “The whole process was really streamlined and good so I never felt that I’m in the wrong hands.

“It’s always reassuring to have a contact who is more knowledgeable and also that you can approach with questions.”

The trial requires Greg to give blood samples at regular intervals. He will continue to do this over the next 18-months with tests once every six months. These appointments have caused little inconvenience to Greg, taking only two hours with travel included.

Greg had little knowledge of TB before taking part in the study and recalls how he first felt after discovering he needed to be tested. “I think the first reaction was fear”, he said. This is no surprise after recalling a documentary he once saw on infections. “It terrified me that you could just contract something and it can kill you”, he said.

Although TB is a serious condition, deaths are rare if treatment is completed successfully. But more research is needed to gain a better understanding of the infection. This convinced Greg to take part in the trail.

Greg said: “Maybe this could help the research team to get a little tiny step closer to find something certain.

“I would love to see what the researchers come back with.”

Despite Greg’s positive experience, there have been some challenges. “I had a bronchoscopy, which was quite terrifying”, he said, recalling the procedure of inserting an instrument into the airways to gain an internal image. But he is confident the trial will be worthwhile and provide positive results.

He said: “On a personal level it’s definitely rewarding to take part in this research and hopefully the research team will find something useful as well.

“They can go ahead and solve bigger puzzles and hopefully help on a global scale because we are not talking about just local incidents when it comes to TB. And considering this, investing in a few hours or a maybe a few days here and there, it’s not a big price to pay. So I would definitely recommend to people to take part in research.”

 

 If you would like to share your story and wish to find out more please contact our Patient and Public Involvement Manager Danielle Neal at danielle.neal@nihr.ac.uk or call 0203 3133 4012.

 

Can you help us spread the word about research?

We're looking for people to help us raise awareness of the research taking place in North West London by becoming Research Champions.

 

What are Research Champions?

Research Champions volunteer their time to help spread the word about health and care research to patients and the public. They also help research and healthcare staff understand more about the experiences of those who take part in research.

 

Who can be a Research Champion?

Anyone! Research Champions are patients, carers, members of the public, people who have taken part in a research study 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.

You may already be involved in raising awareness of research, for example in your local NHS Trust or in your local community - becoming a Research Champion will help you in your current role by giving you access to extra training and invitations to events where you meet other Champions and share experiences and ideas.

 

What do Research Champions Do?

What you contribute as a Research Champion will be shaped around your interests, skills and time. You can volunteer as little or as much as you like. We are especially interested in finding out from you what you would like to do and how we can support you!

Activities could include helping run a research stand in a hospital or GP reception, talking to NHS staff about research, or sharing your story just like Clea and Greg have done in the Patient Stories section of this website.

 

What support do we offer Research Champions?

Everyone who becomes a Research Champion is asked to complete a short induction session where we cover all aspects of research.

Once you've completed this, you can access the an Research Champions Community Space. This is a online learning platform and forum developed by Research Champions, for Research Champions, and aims to support learning, networking, and the opportunity to exchange ideas. 

 

How do I become a Research Champion?

Please get in touch with our Patient and Public Involvement Lead, Danielle Neal. Her email is danielle.neal@nihr.ac.uk or you can call or text her on 07788 388 082.

 

Research is a partnership between participant and researcher. Every year, we ask hundreds of people who have volunteered for health research to feedback on their experience so we can make improvements through the Patient Research Experience Survey.

If you've recently taken part in a research study in North West London, we'd like to hear about your experience. You can complete the survey online

If you are a researcher or healthcare professional who would like to offer the survey to your study participants please email comms.crnnwl@nihr.ac.uk

You can see this year's survey results below (updated weekly).