@article{7a634f4a008047dbaab154f14ee5a197,
title = "Patient perspectives in asthma: Listening to and learning from a new paradigm in translational research",
abstract = "Highlights Gaps in research. Meeting Patients needs. Involving, collaborating progressing to co-creating research with patients. Next frontier: involving patients in co-production of guidelines?",
author = "Dermot Ryan and A Keighley and T Jackson",
note = "Funding Information: At the Asthma UK Centre for Applied Research (AUKCAR) we have adopted a systematic approach to including people living with asthma at all stages of the research process. This has involved elements of training for the patients involved, with particular reference to research methodology. The time invested in this process has been well spent in defining research questions and co-designing research studies and interpretation of results. This naturally progresses to patients becoming co-applicants for research grants, co-authors in journal articles or, in other words, becoming valued colleagues placing PPI at the heart of the Centre [12]. In addition to involvement in research projects, we have four PPI Patient Leads who sit on our Centre Management Committee and contribute to the overall running of the Centre.The IMPlementing IMProved Asthma self-management as RouTine (IMP[2]ART) programme of work has benefitted from PPI since inception [13]. A PPI Patient Lead was involved in the creation of the pilot study and development of the programme grant, and there is a dedicated PPI team of 10 people impacted by asthma who contribute to the development and refinement of the implementation strategy through face-to-face meetings, teleconferences and email. Following a recent discussion group, facilitated by the PPI Patient Lead, we created videos for our dedicated “Living with Asthma” website, providing tips on managing asthma for people with asthma, by people with asthma. In addition, people with asthma were involved in designing the website in the creation of a number of resources specifically for people living with asthma to ensure they are of interest to and accessible by people living with asthma [14].We have a PPI member as a co-applicant on the App for Asthma Connected Plus study which explores the implementation of Internet-of-Things solutions to support asthma self-management. They were significantly involved in the study design and contributed to two qualitative studies exploring patient and clinical perspectives of using devices to manage asthma. Their contribution was essential in providing a patient perspective to the qualitative analysis, helping reduce subjectivity of findings. They are involved in dissemination of findings and a co-author on study papers [19].Previously, PPI members were brought into the research project after the study scope had been generated and deemed “worthy” to proceed to apply for funding. At the Centre, we are changing this model, and have started by asking our PPI members what topics are important for us collectively to research – and co-create the research project from there.",
year = "2022",
month = dec,
day = "1",
doi = "10.1016/j.rmed.2022.107013",
language = "English",
volume = "205",
journal = "Respiratory Medicine",
issn = "0954-6111",
publisher = "Elsevier",
}