Walking in the rain, thinking about illness as an action orientation

The past few days we have been on vacation in the West of Scotland. The back end of September is no time to expect sun, but we saw plenty of rainbows and walked the length of Glen Orchy in some of the heaviest rain I have ever been drenched by. We rented a wing of Bonawe House (left) and ate at two really good restaurants – the Airds Hotel at port Appin (a temple where food is not so much enjoyed as worshipped), and Coast in Oban, which does pretty spectacular Scottish contemporary cooking.

Although I was supposed to be on holiday I was actually emailing back and forth, and reading transcripts, about three really interesting and closely interconnected projects in which we’re using normalization process theory to explore the work of being sick, our starting point is a piece written for a book edited by Graham and Sasha Scambler. The collection won't be published until next May, so I have put the chapter up on my academia.edu page.

First of all, a group led by Chris Dowrick, and including Carolyn Chew-Graham, Linda Gask, Jane Gunn, Anne Rogers, and I are using NPT to examine the work of being depressed. The aim here is to explore depression from an action orientation and to locate novel points of therapeutic intervention. This is really interesting and we’re shortly off to workshop through a set of transcripts and start building testable hypotheses in the splendid surroundings of Chris Dowrick’s hacienda at Molina Canario. This international group has its counterpart in a group led by Victor Montori at the Mayo Clinic, who is leading a programme of work that explores the burden of work in chronic illness and comorbidity, again using NPT, but combining it with our work on Minimally Disruptive Medicine. Being involved in this group is very interesting, the aim is to identify ways of measuring treatment burden and thus enable clinicians to respond to structurally induced non-adherence to treatment regimens. Finally, Frances Mair and I are working with Katie McGrath – a really interesting early career research in general practice – to develop an NPT based analysis of the interaction between burden of illness and burden of treatment in people with chronic heart failure. These three studies all seek to analyse the experiences of sick people from the perspective of their active engagement with healthcare systems and their experiences of doing the work of healthcare for themselves. It's a really interesting application of NPT, which I originally envisaged as a theory of socio-technical change. But now, one of the possibilities that it raises is a rigorous and theoretically informed of the implementation and integration work that people do when they engage with their own illness as active participants in processes of sense-making, cognitive participation, and collective action. It's very exciting.

The value of social media

The Mayo Clinic has just put video of its 2009 Transform Symposium on line. This includes talks by Maggie Breslin and Victor Montori - Victor gives a great presentation of our ideas about Minimally Disruptive Medicine, as discussed in earlier blogs. One of the things that my collaboration with Victor and his colleagues in the Knowledge and Encounter Research Unit has brought home to me is the value of different social media - YouTube, Web 2.0, and even Twitter - in ensuring public and professional engagement with their work. Mayo has an incredibly perceptive and effective social media guru in Lee Aase, and he provides an extraordinary free resource for people interested in developing social media skills and capability.

More minimally disruptive medicine

Minimally Disruptive Medicine is beginning to gather momentum. Here's a video of co-author Victor Montori, talking about MDM at the Mayo Clinic. He's a great speaker.

The burden of palliative care

A very thoughtful and interesting post on the PalliMed blog discusses the clinical implications of our recent BMJ paper on Minimally Disruptive Medicine. Even though this hasn't appeared in the hard copy of the journal yet, I've been really pleased by the postive responses not to the paper - not least from some of my own colleagues here in Newcastle. For me, one of the key conceptual issues that has arisen out of this is how to understand the complex relationships between the burden of the lived experience of illness and the procedural and practical burden of treatment. It's quite clear, when we make up an NPT matrix for Minimally Disruptive Medicine that professionals and patients end up doing different kinds of work. That is an empirical as well as a practical problem to pursue later on.

Minimally Disruptive Medicine

One of the features of my work, first of all around chronic disease management in primary care, and then around telemedicine and related technologies, is the sense that patients are increasingly burdened by the delivery, management and organization of their own treatments. This is especially true as the 'self-care' revolution takes off. With Victor Montori and Fances Mair, I have proposed that we need Minimally Disruptive Medicine. The aim here is to accept that the burden of work transferred from the clinic to the home is growing steadily greater, and that the burden of illness plus the burden of treatment may be too great for some people to bear. This is especially the case as a growing population of older people suffer an increasing number of co-morbidities. This view stems from the ways that we are using Normalization Process Theory to think about the new kinds of healthcare work that are implemented, embedded, and integrated, in everyday life - and which are crossing the boundaries between the clinic and the home.