Patient and Public Involvement in my PhD project – Imogen Skene
PhD student, Imogen Skene reflects on how the insights and experiences of people in the Asthma UK Lay Advisory Panel have helped shape her studies
Imogen Skene is a 1st year PhD student at the Asthma UK Centre for Applied Research. She was invited to present her PhD project to the Asthma UK Lay Advisory Panel earlier this week. She reflects on how the insights and experiences of people in the panel have helped shape her PhD studies.
I had the opportunity to present the plans for my PhD project to the Asthma UK and British Lung Foundation Partnership (AUK-BLF) Lay Advisory Panel earlier this week. Due to COVID 19, the meeting was held virtually over Zoom.
I started my PhD earlier this year, in the mist of the COVID pandemic and have been planning how my project will take shape. I am an emergency nurse by background, and my project is aiming to help improve the long-term asthma control of people who present to the emergency department following an acute asthma exacerbation.
Background to my project
We know that asthma is a common reason for why people present to emergency departments. We think some people might benefit from a change in their asthma treatment to better match their health beliefs and preferences for taking medication. For example, switching to an inhaler that includes both a reliever and preventer in one. My project is aiming to find out what the health beliefs are of people who come to the emergency department, what their behaviours are in relation to how they typically manage their asthma and how they would feel about a change in medication in the emergency department.
In order to do this, we would need to recruit patients to this study, ideally from within an emergency department. So having the opportunity to discuss my plans with people who have asthma, and who could tell me how they would feel about taking part in this study from their own lived experience, was a valuable opportunity.
What is Patient and Public Involvement?
Patient and Public Involvement (PPI) in research has been growing over the last few years. NIHR (National Institute for Health Research) INVOLVE define public involvement as ‘research… carried out with or by members of the public rather than ‘to’, ‘about’ or ‘for’ them’. The AUK-BLF Lay Advisory panel bring expertise and insight to our asthma studies. Asthma UK and the British Lung Foundation Partnership and the Asthma UK Centre for Applied Research aim to involve people with asthma at all stages of research, which gives confidence that it will make a real difference to the lives of people with asthma.
Involving patients and the public in our research can have great impact as well. NIHR has defined PPI impact as ‘The changes, benefits and learning gained from the insights and experiences of patients, carers and the public when working in partnership with researchers and others involved in NIHR initiatives’.
Shaping my project
I presented the background of my project and my proposed study plans to the group and was overwhelmed by the enthusiasm that came back to me. We were able to discuss the outcomes of the project and what would be important to them. For example, improving adherence to medication and reducing the hospitalisations for asthma.
The panel were able to give me food for through on their experiences of attending the emergency department and the follow up care provided, as well as their experiences of inhalers and how they felt about medication changes.
We were able to discuss the acceptability of approaching patients in emergency departments to take part in the research and the panel felt most people would be willing to take part. Additionally, the panel helped me understand that being involved in research, especially about their asthma beliefs and management would appeal to people. We also covered the finer details: should we conduct interviews in the emergency department or after they have gone home? How much time could be spent on completing questionnaires?
We discussed the importance of learning more about who presents to the emergency department and how we can use that information going forward to develop appropriate to help long term asthma control.
Conducting research, in a setting such as an emergency department, can be challenging, without the additional obstacles that COVID-19 presents. Having the opportunity to involve the panel in the project at this early stage, helps to increase the chances of the findings from this study having a real-world impact.