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Cystic Fibrosis Trust

Patient and Public Involvement

Putting your voice at the heart of progress.

People living with cystic fibrosis (CF) and their families are experts in just that – living their lives with this condition. Knowledge of this ‘lived experience’ is not only valuable to us at the Trust, but also for researchers and pharmaceutical companies planning and designing the next studies for clinical trials.

What is patient involvement?

Patient involvement in trials is different from patient participation – involvement does not mean taking part in a specific trial where you are the subject of a study. Involvement is being aware of research more generally, being part of the process of discussion, providing comment and feeding back views and opinions for researchers to incorporate into their work.

Find out more about patient and public involvement by visiting the NHS National Institute for Health Research website, INVOLVE.

The National Institute of Health Research's definition of involvement in research is: "Research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them" (NIHR INVOLVE www.invo.org.uk)

How are we encouraging patient involvement?

Patient & Public Involvement – or PPI for short – is one of the major elements driving the Trust’s Clinical Trials Accelerator Platform. This means putting the community at the heart of our commitment to supporting access to clinical trials.

Along with the appointment of our CF Trials Accelerator centres across the UK, the Clinical Trials Accelerator Platform has been ensuring the voices of our whole CF community inform all aspects of clinical trials.

Half of the Trials Accelerator team comprises people affected by CF (people who are either living with CF themselves or are parents of someone with the condition). With additional feedback from other people living with CF, we have been developing some new information guides, which will include fascinating and inspiring stories from those who have previously participated in trials, and will provide an understanding of the complexities of the trials process.

We want to know why people may or may not consider participation in a trial so we can address these barriers and make sure that everyone can take part if they wish.

It’s important that people with CF can show researchers how to adapt their trials to meet the needs of a community who already have a heavy burden of care, so that research meets the requirements of the CF community – not just the desire of researchers or pharmaceutical companies.

We known that patient involvement leads to better design – and in turn, better research

Trials Tracker

In the spring, we conducted a survey to help us create our own database of CF trials, which would be a valuable resource for people affected by CF seeking trials they or their loved ones may be suitable for. Our Trials Tracker is now being built, taking this feedback into account, and after further user testing over the summer, will be ready for use from our website in the autumn, providing a comprehensive list of all current trials and a filter search function.

The history of clinical trials

Our 'Five Trials’ video highlights the value of clinical trials by showcasing some treatments now commonly in use for CF care, made available by people taking part in trials over the last 30 years.  This video came about through people with CF expressing their desire to give something back to future CF generations – not only their commitment to a trial but sharing the experience it gave them.

How can I get involved?

Lay Reviewers

We have already established our group of Lay Reviewers (people with CF or their parents, who have no scientific training or experience) and this team are preparing to liaise with researchers, ensuring that the community needs and existing heavy treatment regime are accommodated. They will have opportunities to shape and influence the design of trials by reviewing the plans and procedures in advance, as well as reviewing the results published upon completion of a trial.

Focus Group

Our Focus Group is expanding, seeking representation from the whole CF community, from the youngest to the oldest, ready to give their views and opinions by answering surveys and questionnaires, or by joining digital forums presented by research teams. If you are interested in research and want to get involved, find out more and register your details by emailing clinicaltrials@cysticfibrosis.org.uk.

Peer Advocates

Or you may consider being a Peer Advocate – people with CF (or parents) who, through their experience of trial participation, are keen to promote the value of research and to share those experiences with others considering participation for the first time. As our CF centres are appointed to the Trials Accelerator we will be seeking more Peer Advocates, so if you would like to find out more about this role, please contact us at clinicaltrials@cysticfibrosis.org.uk.

Research

The Trust is committed to funding and supporting cutting-edge research to find new and better treatments for cystic fibrosis. Take a look at some of that work and the progress that is being made.

Discover more

What is cystic fibrosis?

Find out more about cystic fibrosis, its diagnosis and how it is treated, as well as useful links to our publications and other organisations who can help.

Read on

More information

If you would like to find out more about any of our campaigns, publications or anything else, get in touch and we'll be happy to help.

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