PPI 2015 Unit III

Patient and Public Involvement in The Asthma UK Centre for Applied Research (AUKCAR)

Asthma UK, a charity supporting asthma research, decided to fund a new research centre with the aims of reducing asthma exacerbations and deaths and improving asthma management.  The University of Edinburgh successfully applied to run the Centre and built in patient and public involvement from the start (declaration of interest – Allison Worth led the patient and public involvement work). We asked Asthma UK to email all their members in Scotland asking what they thought our research priorities should be. 52 people with asthma and parents of children with asthma took part in a priority-setting exercise by completing questionnaires, or taking part in focus groups and telephone interviews. They identified six priority research areas, which we built into the grant application. Three people affected by asthma were co-applicants, came to our funding ‘interview’ and now sit on our Centre Management Committee, so they are involved in all the strategic decision-making for the Centre. The Centre now has a Patient Advisory Group of 81 people across the UK who advise on all aspects of our asthma research. A Children and Young People’s Group has also been set up. Every project run by the Centre must have patient and public involvement throughout. The Patient Advisory Group advises on every aspect of project design and conduct. Patient and public involvement in AUKCAR has an impact on:

• research topics: a funded PhD studentship is based on an idea generated by one of the group
• training for researchers and students: patients contribute to face-to-face and webinar training sessions on topics such as living with asthma and writing for a lay audience
• study design: patients contribute to study materials (lay summaries, patient information leaflets and consent forms), influence interventions and outcome measures
• funding decisions: a patient panel reviews all PhD studentship applications
• facilitation: patients co-facilitate the children and young people’s group and occasional research prioritisation groups
• interviewing: patients participate in interview panels for new researchers
• dissemination: patients help to promote the Centre and its research through blogs, public speaking and charity events and co-author publications

Olivia’s blog, which you looked at in Unit 2, emphasises the impact involvement in AUKCAR has on her personally. Here is another comment from one of the Patient Advisory Group:

“As the working mother of a young child with asthma and living far from the Centre, I get involved mostly through telephone discussions with the researchers. I am particularly interested in improving care and treatment for children and have been involved in some research studies which focus on that. I have also been part of a ‘patient panel’ to review PhD studentship applications for the Centre. This was a fascinating experience as I developed an even greater understanding of the facts surrounding asthma and the impact it has on the lives of sufferers and their families. It was reassuring to read so many innovative ideas for studies that could make such a huge difference to people. It is comforting to know that there are so many enthusiastic students who are dedicated to improving the lives of asthma sufferers in a variety of ways. I find it interesting to hear about all the research that’s going on in the Centre and like the fact that I can choose what to get involved with. I feel really encouraged that so much exciting research is going on that will help children with asthma lead better lives and I feel privileged to have the chance to play a small part in it.”