The Promise of Precision
Precision medicine, which is billed as being tailored to the needs of each individual patient, promises a great deal to those undergoing treatment. Many of the disease areas that precision is used for come with a diagnosis of decreased life expectancy, including colorectal cancer, lymphoid cancers, and cystic fibrosis. The possibility of an individualised treatment that will yield better results than regular treatments, therefore, gives hope to many patients with these diseases.
But sometimes the hoped-for outcome is never realised, and precision medicine fails to live up to expectations. Joshua Hordern’s project aimed to ethically evaluate the ‘promise of precision’, which he describes as ‘the influence of promise and expectations on the culture, communications and ethos which have grown up around precision medicine’. The Fellowship activities were aimed at ‘understanding and improving the journey patients undergo, particularly those whose experience is influenced by promise or hype around a medicine tailored to them when this turns out not to be reality.’
The Fellowship ran workshops on compassion in healthcare, bringing together healthcare professionals and researchers from the humanities and social sciences. The first workshops discussed political, legal, philosophical, and legal perspectives on compassion, investigating how each could complement each other to lead to better policies on compassion in healthcare. A final workshop was arranged on educating compassion in healthcare, which received positive feedback from attendees. The University of Oxford Healthcare Values Partnership has grown out of these workshops, consolidating relationships with healthcare institutions include the Oxford Clinical Commissioning Group and the Royal Society of Medicine.
Through working on this project, Joshua says that he ‘learnt some inspiring things about the cultures of solidarity, creativity and engagement which can grow around patient communities. …. One of the most beautiful things I learnt about was the Cystic Fibrosis Virtual Choir — an amazing feat since people with CF can’t be in the same room as each other because of cross-infection.’ Although this Fellowship focused on working with practitioners, Joshua hopes that his future work will allow him to work more closely with patients. He is currently submitting a funding bid for a multi-year project to continue this research, which will launch in 2019 if successful.
During the Fellowship itself, new funding was granted to the project from both the Sir Halley Stewart Trust and the British Academy, who awarded Joshua a Rising Star Engagement Award in 2015. As well as its widespread societal impacts, Joshua says that the project has helped him to focus his own research directions. He writes that his monograph on citizen health was ‘significantly shaped’ by the workshops, and that the collaborative work conducted during the Fellowship gave him productive insights into how financial incentives shape understandings of ‘value’ in healthcare.
Compassion in Healthcare poster