Patient centred research: a model for involving cystic fibrosis (CF) patients in research planning

Abstract

Background: Involvement of patients is central to the success of any future research. The James Lind Alliance priority setting partnerships identified the research questions of most direct relevance to CF patients. Continued patient and public (PPI) takes this further and offers opportunities to plan research with patients. Constant evaluation is necessary to measure impact. Here we report the application of PPI in the study planning phase. Objectives: 1 To involve patients in developing a mixed methods study about fatherhood in men with CF. 2 Report the impact of PPI throughout the life of the research. Method: Following promotion of the topic within a large UK adult CF centre, attending patients expressed interest in participation. Key principles of PPI were discussed. Due to cross infection risk, patients cannot come into direct contact with one another, a particular challenge of incorporating PPI into CF research. Grant funding was secured for reimbursement of patient travel and time. Results: Repeated individual meetings have now taken place with three patients. Key principles and features have been co-established: sharing power; including all perspectives; respecting and valuing knowledge; reciprocity; building and maintaining relationships; roles & expectations; personal development; flexibility in plan; and evaluation. A method to incorporate PPI into the study has been jointly developed. Conclusion: PPI positively impacts the research planning phase. Patients have helped develop research that is timely, addresses meaningful questions and that they are willing to take part in. Co-design is possible even when infection control limits patient-patient interactions.