Patient perspectives in asthma | Amanda Keighley
Amanda, our Patient and Public Involvement Lead reflects on co-writing an article with other Centre members
In late 2022, members of the Asthma UK Centre for Applied Research published an article in the journal Respiratory Medicine describing patient experiences for those living with asthma. The publication also discusses the move from patient involvement and partnership in research, to the ideal model: coproduction throughout the research project life-cycle.
Patient Experience
One of our Patient and Public Involvement (PPI) Leads, Amanda Keighley, was a co-author on this article, relating her changing experience of having asthma throughout her lifetime.
She described having colds and chest infections every winter as a child, having coughs and wheeziness and developing hay fever which increased the symptoms in her chest. As an adult, Amanda began to have more frequent and severe asthma attacks, until she moved house and started working with a new GP and asthma nurse. Working together with these healthcare professionals allowed Amanda to have better understanding of her asthma, and was able to manage it better.
Through participating in a study into vitamin D levels in people with asthma, Amanda was gaining more insight into asthma and its impact on her lifestyle. After she was diagnosed with allergic asthma and was prescribed a course of immunotherapy. This is a long-term treatment which introduces patients with a small dose of a substance they are allergic to, increasing the dose over time. The idea is to reduce the body’s sensitivity to the allergens. It was after starting this treatment that Amanda was approached and asked to consider joining in PPI for asthma.
Getting Involved in Research
Since joining the Centre’s PPI group, Amanda has had opportunities to speak with other people living with asthma. She’s been involved with the Centre’s research at many points: working with healthcare professionals and academics to listen and share views on proposed research; reviewing the data collected in a project; reading material for publication; being a co-author on research articles; and being in videos discussing PPI in the Centre.
Reflecting on the experience of co-authoring this publication, Amanda said:
“Writing with a focus on my experience of having asthma from childhood and into adulthood has been an opportunity to reflect on my journey with a chronic health condition. My memories of what happened and how I felt throughout nearly 60 years made me realise my increased understanding of how I live with my asthma, as it is always with me. The knowledge and skills I have learnt over the years in how to best manage my health has been through listening and talking with health care professionals, reading research and more recently sharing thoughts and information with others who also live with asthma.”
“Being involved in research has made me realise that I too can contribute to make a difference to the asthma community. I just need to bring myself and my experience of living with asthma to PPI meetings. It’s not an onerous task. In fact, it’s fun. Engaging with those whose role it is to research and provide new evidence and initiatives to improve the successful management of this chronic condition from my perspective really counts.”
PPI in the Centre
The article discusses how PPI is embedded into the Centre’s work and how the Centre has ambitions to create a culture of coproduction throughout the research life-cycle. In that way, the Centre and healthcare professionals and research groups in different subject areas, can undertake studies which will have maximum benefit for the people they impact.
Read the article
This publication is available from the journal Respiratory Medicine
Cite this article
Ryan D, Keighley A, Jackson T. Patient perspectives in asthma: Listening to and learning from a new paradigm in translational research. Respiratory Medicine. Volume 205. 2022, 107013. doi: 10.1016/j.rmed.2022.107013