Voices in Research: a dialogue with patients to co-create our pneumonia study

At the Birmingham BRC, we work with patients and members in a variety of ways across the research cycle. One of these ways is involving patient or public partners while developing a research idea – this ensures that our study addresses what’s most important for the people it’s going to benefit, and that our work has a true positive impact on our communities. But what does this look like? In this blog, Dr Samuel Quarton from our Infection and Acute Care research theme highlights his personal experience of involving patients to inform the design of his research study on Hospital Acquired Pneumonia.

As a doctor working in intensive care medicine, I see how serious Hospital Acquired Pneumonia can be. HAP, for short, is where someone picks up a pneumonia (a serious lung infection) while they are in hospital. HAP is an unfortunate, and sadly common complication of hospital admission. Outcomes for patients with HAP are poor, with up to 30% of people dying from the condition. Despite this, much about HAP is still unclear, including who is most vulnerable, what factors alter whether people recover from the illness, and which bacteria or viruses cause the infection.

I wanted to work with the Infection and Acute Care theme at the NIHR Birmingham Biomedical Research Centre to better understand HAP so that we could improve how we treat patients. This includes understanding how our immune system responds to HAP, as well as testing new ways of finding the infective cause of HAP using state-of-the-art scientific techniques.

Before starting to design a research study, I wanted to learn what people who had experienced HAP thought about the condition, hear more about their lived experiences of being cared for with HAP, and work with them to design research which they felt was important.

Talking HAP: a patient-centric approach

Towards the end of last year, I had the pleasure of being invited to talk with members of the Redditch & Bromsgrove Breathe Easy group, a support group for patients living with long term lung conditions. After waiting (very) patiently while I struggled in vain to connect my laptop, we then talked about the work of the BRC and the project I hoped to develop with them, to provide better care for patients with HAP.

After I gave an introductory presentation, the people in the group asked a range of insightful questions about HAP, shared their experiences of being diagnosed and treated for the condition, and provided their thoughts on what they felt should be the priorities of the research study. This included the techniques we are using, which involve looking at the genetic make-up of bacteria and viruses to provide better and faster information about what has caused the infection; and learning how we can improve how the immune system works during infections.

Working with this group of people, who by nature of their underlying health conditions would be more vulnerable to developing HAP, is incredibly helpful. Many of them have personal experience of recent hospital admissions or problematic and recurrent infections. Being able to get their perspective at this early stage of my project on what they felt would be meaningful and what factors they would prioritise was invaluable. I believe their input will help me design research that is not only scientifically interesting but has value to people who may be affected by the condition.

After more informal chats and questions over tea and coffee, the session wound to a close, and I left having been made thoroughly welcome, and with my head buzzing with ideas to improve my project.  I am especially grateful as the group have invited me back to discuss our work in more detail. I will be delighted to do so, although I will try to bring a fully functional laptop next time!

The Redditch & Bromsgrove Breath Easy group meet once a month and contact details and more information can be found at: https://www.asthmaandlung.org.uk/help/support-network/redditch-bromsgrove-breathe-easy-group-affiliated-aluk