Our approach to patient and carer involvement
We are committed to involving patients, carers, families and local communities as active partners in shaping our research. We want to make sure that people with many different perspectives and experiences have the chance to influence what we do and how we do it. This helps us to focus on what really matters to people.
We have set up a Patient and Carer Advisory Group made up of 7 people from across the UK who have personal experience of living with pulmonary fibrosis. This includes people from Northern Ireland, Yorkshire, and the South West, who we recruited through NHS hospitals with specialist pulmonary fibrosis services. Some members of the group have lived with the condition for many years, and others were more recently diagnosed. Two members of the group are carers.
The group will meet online at regular points throughout the trial. Since the trial began the group has helped us to choose a logo for the trial and agreed the use of the term ‘carer’ to describe those who care for or support someone with pulmonary fibrosis. Before submitting our application for ethical approval, the group reviewed the information for people who will take part in the trial and in the interviews, to make sure it was clearly written and well designed. Their input helped us to improve how we described the two groups taking part in the trial, and the process that each would go through. We also added a question to help us capture if any trial participants have previously received breathlessness management support, outside of this trial.
As the trial progresses, we will share our findings with the group for sense checking, and they will then advise on ways of sharing our findings with trial participants, patients and the wider public. This will include making a film or animation, and a podcast, with members of the group.
We have also recruited two people with pulmonary fibrosis to sit on the Trial Steering Committee.
Carer Advisory Group member spotlight
My name is Mike Chorlton. I am 64 years old and live in Portishead, near Bristol. I was diagnosed with Idiopathic Pulmonary Fibrosis in Autumn 2021, although the disease had been with me for at least 2 years prior to that. I had no idea at all that I was ill. In September 2021, I got Covid and that developed into pneumonia. The pneumonia rapidly exacerbated the IPF. Within a month I went from swimming a mile before work every morning to being unable to climb my own flight of stairs without getting out of breath. This caused very significant scarring to my lungs. I was put on ambulatory oxygen and then on the list for a lung transplant.
When I was asked to join this advisory group, I felt happy to help if it would make the journey easier for people who follow me. However, it was with the understanding that, by the end of this trial, I would no longer have IPF. If I did not receive a transplant, I expected to die. I am delighted to say that, after 3 failed attempts at surgery, I received a beautiful pair of donor’s lungs in July 2024. I now have a future that was rapidly slipping away. Although I no longer have IPF, I have a very clear understanding of dealing with breathlessness, of trying to live a positive life with a terminal illness, of constantly waiting for a call to surgery, and of the impact that has on carers and other loved ones. I hope my experiences will help this group to develop the right, balanced perspectives.
Involve Hull
Discover more about getting involved in health and care research at the University of Hull through our public involvement network, Involve Hull
INVOLVE Hull