Find out everything you need to know about Patient and Public Involvement (PPI), including:
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)
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 people living with CF, we have developed our clinical trials booklet, which includes fascinating and inspiring stories from those who have previously participated in trials, and provides an understanding of the complexities of the trials process.
Download the booklet
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 know that patient involvement leads to better design – and in turn, better research
In spring 2017, 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. Taking this feedback into account, and following further user testing over the summer, our Trials Tracker is now up and running, providing a comprehensive list of all current trials and a filter search and watch list function.
Explore the Trials Tracker
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.
Supporting study for HIT-CF
Participate in an interview study into the perspectives of people with CF on the ethics and governance of (long-term) storage and use of organoids for CF precision medicine research
Are you familiar with the possibility of using ‘mini-guts’ (intestinal organoids) grown from stem cells as a drug screening tool, to realise personalised treatment for people with CF? If so, then the University Medical Centre in Utrecht (Netherlands) would like to interview you. We are interested in hearing the opinion and preferences of people with CF (or parents of children with CF) about the ethics and governance aspects of using and storing of ‘mini-organs’ via biobanks for precision medicine research.
Research on organoids is a promising new technology and a step towards ‘personalised medicine’: treatment that is tailored to the unique characteristics of the patient. This technology has great potential for the field of CF, and is now being implemented throughout Europe as part of the HIT-CF programme. The aim of our study is to explore the perspective of people with CF, which can inform responsible development of this technology.
The interview will last max. 1 hour, and will be carried out via phone. If you are willing to participate or if you would like additional information, please contact principal investigator Michael Lensink by sending an e-mail to: firstname.lastname@example.org.
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.
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 here.
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 email@example.com.