Burden of Treatment

I’ve had a really interesting few days. Mainly this has been about preparing for a Normalization Process Theory masterclass at Glasgow Caledonian University on Thursday evening. This was a really interesting session with a gratifyingly full room and interesting questions and answers afterwards. But it also was an opportunity to talk more generally about the business of theory building, and exploring the constraints on explanations that are developed in relation to programmes of empirical research work. This is a crucial problem – theory writers are rarely as interested in discussing the limits to their work as they are the expanding field of its applications. One of the merits if NPT – as I see it, anyway – is that it is so explicit about its limited scope. This means that it federates with other theories in Science and Technology Studies. Helen Cox’s PhD thesis on ‘Translating Molecular Diagnostics’,supervised by Andrew Webster in the Sociology Department at York University, here in the UK, is a really interesting example of a thesis that ‘nests’ NPT within a broader theoretical framework. It’s a really interesting and well constructed thesis too.

Work combining NPT with attempts to secure Minimally Disruptive Medicine continues, and it’s plain that this is going to be a key clinical application of NPT. The good news is that Frances Mair, Victor Montori, and I have now secured funding for a study that will explore the interactions between Normalization Process Theory as an analytic perspective and minimally disruptive medicine as a policy objective. We will be exploring the ways that people with heart failure make sense of the work of being sick and integrate it with the work of patient-hood. This is really exciting, and promises to grow our collaboration into an even more interesting body of international work. I’m thinking that next year we should have a seminar to bring together the three groups of ‘burden of illness/burden of treatment’ researchers working across heart failure, depression, and multiple co-morbidities. That would be a groovy treat!

I’ve mentioned Lee Aase – social media guru at the Mayo Clinic – before and no doubt I’ll mention him again. He’s really generous with his knowledge, and hugely helpful in the way he explores and explains social media. This week he was talking at ementalhealth 09. Interestingly, he used the way Mayo presented our Minimally Disruptive Medicine article in the BMJ on Twitter as an example. Here’s a link to his presentation. And here’s another link, this one’s to a presentation about pecha kucha – speed powerpointing – with some interesting thoughts about empathy and signs.

Conceptualizing depression in the Sierra Nevada

Over the past few days, four of us have been working through the problem of depression at Chris Dowrick's house in the Sierra Nevada (left). Our aim was to explore depression not by reference to the phenomenology of suffering or distress, but by engaging with the work that people need to do as they engage with depression. Our conversations were dominated by the recognition that depression is much more than a biomedical construct, and that it is a deeply embedded artefact of western culture. Our discussions were founded on data - we worked through transcripts, aiming to form our conclusions around a set of analytic propositions that we could then test against new data. This

kind of conceptual work is interesting, but also it's unusual. Most of the research in our field is

driven by data collection - but we're awash with results that reflect old orthodoxies. Now's the time for social and clinical scientists to work towards producing and applying new explanatory frameworks and for rethinking old problems. We had some great conversations - I've not laughed as much for weeks - and some great dinners with good local wine and fresh peasant bread and cheese (bottom photo, left to right: Linda Gask, Anne Rogers, Chris Dowrick, Carl May).

Our way of working through this problem, as I mentioned a couple of weeks ago, has been to use Normalization Process Theory as a framework to think about the work that sick people need to do. Because NPT was developed as a theoretical model to understand socio-technical change in organizational contexts, I had never thought that it might be used to understand individual illness experiences. But there do seem to be interesting opportunities here, because NPT helps us to understand the work that people do as they seek to make sense of their illness, and as they join themselves and others to it, and operationalize the knowledge and practices that surround it. An interesting point here is the way that the sociology of health and illness has so little to say about getting well. The business of sickness is often conceived of as chronic and inevitably degenerative. As I say, we need to rethink old orthodoxies.