Way up high
Jess Farr-Cox (Project Manager, Bristol) writes:
Our recent official launch of the project was in many ways a model of interdisciplinarity. The team is diverse and large, which gives us a richness of perspective, but also creates difficulties in how to speak to each other across the boundaries and underlying assumptions of the various disciplines (medicine, history, anthropology, philosophy, literature, medical humanities and more). To make sure we communicate well, each Breathing Space meeting (of which this was the third, part of the official launch of the project in Bristol) begins with an introduction to one of those disciplines. In this meeting, the subject was philosophy.
After brief introductions for the benefit of new colleagues (post-doc Oriana Walker, who joins us in January 2016, and Project Manager (Durham) Sarah McLusky), PI Havi Carel asked what philosophical research methods are. This proved to be elusive, described by Havi as ‘reading other work and thinking about connections with other areas’, which we all agreed sounds deceptively vague. Havi added that her own research methodology involves discussion with trusted peers and noted that philosophers at the beginning of their training (i.e. students) tend to need help with thinking about what good philosophical questions are. One wants to avoid questions that are unoriginal; questions that have been resolved; or questions that are too broad. This led into a discussion of ‘bad questions’ and the concept of ‘wrongness’ in research. Gene Feder commented that there is a gap between science and the arts that can seem unbridgeable, because there is no ‘wrong’ in arts, whereas experimentation can allow a scientist to use the word ‘wrong’ (Gareth Williams asked, ‘can you drill down to ‘the truth’?’, to which Gene responded, ‘that’s a philosophical question’). James Dodd noted that there can be a certain pragmatic truth about (for example) a treatment that proves to be efficacious, and which the evidence suggests is beneficial, but such a treatment may not work (be ‘true’) for the next patient, or the next time it is used on a given patient; and that challenges medical professionals to go beyond pragmatic truth.
Gene and James also said that even the best measurements of treatment effects can only (mostly) capture the majority experience, and often only the physical/measureable aspects of that experience. James explained that he prescribes treatment on the basis of the evidence available, but acknowledged that there are very few areas of top-notch evidence. Gareth commented that, while acknowledging the importance of medical history, science moves on, looking for new evidence and physiological distinctions. James also felt that there were similarities in how a scientist and a philosopher might ask a question, but also noted that a common (bad) question in science is, ‘I have a new piece of kit. What can I do with it?’
After the phenomenology workshop in the afternoon (you can listen to some of the talks from the afternoon by going to the launch page of the Life of Breath website), our evening festivities included a vocal workshop, warming up our voices in preparation for singing together, but also thinking about how we breath, why, and (as I say in the short film) what we can do with our breath when we turn it into other things. Our earlier discussion of learning to communicate across disciplinary boundaries was neatly symbolised by the glorious harmony we created in the evening, each making our own various contributions, all complementary to the greater whole. Singing in a group also involves listening to the other singers in the room to determine how one’s own voice can fit into that larger pattern (earlier, during the Breathing Space meeting, Gene had commented that a recent (and welcome) change in medicine has been more attention paid to ‘the voice of the patients’; James responded that listening to patients has a therapeutic function, and impacts on compliance).
The Barefoot quartet, who sang for us before leading us in song, modelled the listening necessary to good teamwork for us beautifully. Their set included a gorgeous rendition of ‘Somewhere Over the Rainbow’, one of the songs included in Jayne Wilton’s work Drawing Breath, in which human breathing is traced as the air leaves the body.
Many of the people who participated in Jayne’s work chose to sing, including ‘Somewhere Over the Rainbow’, with its imagery of thin, oxygen-poor air, ‘way up high’ (although see also Daljit Nagra’s description of the high he got from his inhaler in ‘A physical event‘). Jayne Wilton writes,
The breath from a range of individuals from all stages of life and with a range of lung capacities has been recorded. From children to athletes to hospice patients, the breath drawings challenge us to look again at processes such as respiration that we think we know well.
 Gene recommended Paul Glasziou’s paper on evidence-based medicine in the BMJ).
 There was also discussion of terminology and the assumptions underlying how we describe diseases. Oriana Walker suggested that there is a fundamental assumption that diseases exist (symptoms vs. disease ontology) and can therefore be identified, described and discussed in a definitive way, rather than a more symptom-oriented ‘symptom sets’ model. PI Jane Macnaughton noted that the names given to COPD are variable and hard to capture; the lack of a clear history of COPD in its various forms is something Oriana hopes to correct in her post-doc.
 Jayne recorded much of our launch day and is in the process of using these raw materials to create art, of which more in future posts.
Jess is the Bristol project manager for Life of Breath. She is also a freelance proof-reader, copy-editor, indexer, teacher and writer.