Dr Barny Hole

Honorary Research Associate, Bristol Medical School (Population Health Sciences)
NIHR Academic Clinical Lecturer in Health Needs of Older People: Renal Medicine, Bristol Medical School (Population Health Sciences)

I am a kidney doctor and researcher. My research looks at how health systems can get the right balance between preventative treatment, management of disease, and care focussed on people’s quality of life. My PhD examined how older people with kidney failure decide between dialysis and conservative kidney management. I showed that they would accept shorter lives if this protected their independence and decreased treatment burdens such as hospital visits, intrusion into the home, and time lost to treatment. Family members were crucially important in decision-making, but appeared less willing to renounce potential life prolongation than patients were for themselves. This study highlights the need for health services that offer greater individualisation and choice, prioritise independence, and minimise intrusion from treatment.

I am developing follow-on research with a more inclusive group of older people to answer the following question: What outcomes do older people with multiple long-term conditions prioritise when considering medical treatments, and how do the trade-offs made between perceived benefits and burdens change as they age and experience life events? This addresses whether the trade-offs elicited were unique to participants considering kidney failure, or captured higher-level preferences amongst older people living with multiple long-term conditions, and whether participants’ preferences are fixed or change over time.

I am Co-Investigator on “Whispers from the Archive: Chronic Illness, Creative Responses and Community”, which builds on “Letter to My Kidney,” a participatory arts project that emerged from my doctoral work. Together with Elspeth Penny, we captured people’s stories of living with chronic kidney disease in anonymous letters, which were developed into a verbatim play taking participants’ stories to new audiences and fostering empathy and understanding (https://2buproductions.org/bring-research-to-life/). Our expanded multidisciplinary team is developing “Little Whispers: Hear me” to utilise creative letter writing as a participatory research methodology with embedded artistic co-production, guided by the principle ‘Nothing about us, without us’ to build new, interdisciplinary understandings of chronic illness.