The voice of the patient in clinical research and development is increasingly being taken into account, from the setting of research priorities right through to dissemination of results. This marks a shift in what has historically and culturally been seen, until relatively recently, as research “on” rather than “with” patients.  PPI is an inherent part of the c4c project and its clinical trial network and benchmarking activities. The involvement of patients in all c4c clinical trials is assured and currently ongoing within the non-industry studies.

Within the TREOCAPA clinical trial, the European Foundation for the Care of Newborn Infants (EFCNI) is the designated PPI partner. The foundation has been involved since the drafting of the study protocol and has established a dedicated Parent Advisory Board (PAB). Both EFCNI and the PAB provide input into various aspects and materials developed within the framework of the trial. For example, the informed consent forms, patient information summaries, training materials for medical professionals approaching parents, input into follow-up, a video for the general public etc. A dedicated web page to the trial has been set up on EFCNI’s website: https://www.efcni.org/activities/treocapa/ and EFCNI regularly provides updates and promotes the study on their social media channels.

PPI in the cASPerCF study has been led by a patient representative, a full study team member able to listen and advise on all elements of the trial. Throughout the study, the views of children and young people with Cystic Fibrosis and their families have been sought by forming a focus group. This focus group has had input on the design of the trial and the subsequent materials developed such as the patient information sheet. The study has also created a twitter account, @cASPerCFstudy, for patients, the public, health professionals and researchers to keep up to date on our progress.

Societi, the UK Foundation for Kawasaki Disease is the PPI partner in the KD-CAAP clinical trial. The foundation has been involved with the KD-CAAP trial from initial concept, when Societi’s founder brought clinical experts together to focus on developing a clinical trial. In preparation for the first participants joining, materials and resources were produced to help patients and their families understand the trial better and get the information they need. Resources include information leaflets, dedicated web pages at https://www.societi.org.uk/kd-caap/, a Family Resource Portal and newly released My Societi Young People’s Portal and a newly established Twitter account dedicated to trial news @KdCaap. There are a range of clinical information resources in addition, including training resources, being made available to trial centres. Societi have also been involved in producing trial resources including newsletters, a new trial logo and patient consent and assent forms – as well as raising awareness of the trial on Societi Foundation social media channels.