Beyond Information: Intimate relations in clinical practice Maggie Mort Institute for Health Research Centre for Science Studies Lancaster University UK

Acknowledgements Carl May and Tracy Finch (University of Newcastle Upon Tyne) Frances Mair (Glasgow University) Dawn Goodwin (Lancaster University) Andrew Smith (Lancaster Royal Infirmary) Catherine Pope (Southampton University)

Claims and counter claims…

…..a multi-billion pound information infrastructure, which will improve patient care by increasing the efficiency and effectiveness of clinicians and other NHS staff….creating an electronic highway…a major step towards providing seamless care for patients….provide public access to information and care through online information services and telemedicine. (NHS Information Authority 2004)

…round the clock, online access to patient records and information about best clinical practice for all NHS clinicians ( NHS Executive, Information for Health 1998)

The informatisation of medicine? …medical knowledge has moved beyond the clinic and is available ‘over the wire’…clinical decision-making is rooted not in the intellect of the practitioner, but within health ‘intelligence’…an information science. (Nettleton, The Emergence of E-Scaped Medicine, Sociology, 2002)

The world is made up of information… (Jos De Mul, The Informatisation of the Worldview, Information, Communication & Society, 1999)

The ‘informatisation of medicine’, as in genetics and health informatics, ‘weakens the epistemological and professional authority of medical science and practice’ (Webster, Innovative Health Technologies and the Social, Current Sociology, 2002)

And the doctors are worried… The assumption that the information will be accurate or complete enough to base emergency clinical judgments on seems unrealistic. A lot of GP computer data is excellent but much is incomplete and some inaccurate. You will be accessing data stripped of context and possibly free text, without knowing the reliability of the data recorder, no audit trail …and no idea how many times it has been mangled by data transfer. E-Health Insider Readers Comments March 2005

medicine and information Medicine: The science or practice of the diagnosis and treatment of illness and injury and the preservation of health (OED, 2002, 5th Edn)

Information 1. An instruction; 2. Communication of the knowledge of some fact or occurrence; 3. Knowledge or facts communicated about a particular subject, event; 4. Without necessary relation to a recipient: that which inheres in, or is represented by a particular arrangement, sequence or set, that may be stored in, transferred by, and responded to, by inanimate things. (OED, 2002, 5th Edn).

Archival, storable or Generative, dynamic?

two studies of practice… teledermatology anaesthesia

Information in action 1: ‘live’ human machine relations The ECG tracing shows a run of different rhythms, then reverts back to normal. A1: Are you all right there? [to patient] A1 changes the bag of fluid. He touches something on the monitor and the screen changes. After a moment it goes back to normal. Pulse 92, oxygen saturation 98%. (Observation 4: senior house officer, trauma list)

Information in action : ‘live’ human machine relations A2 is standing by the pump looking at the monitoring screen. He presses buttons on the pump, … totally isolated low BP (44 ⁄ ?) in the presence of a good radial pulse… artefact… R: …I was going to ask whether you believed it… A2: No A1 back to the anaesthetic machine [which is just taking another BP reading]. A2: See! He points to a blood pressure of 103 ⁄. (Observation 32: consultant anaesthetist, orthopaedic list)

Information in action 2: ‘stored’ human/machine relations Nurse01: The referral note there is free text, so I can write whatever I want. Whether or not they decide to read it at the end or skim through it or read it, I feel I can put everything I feel is necessary down. So if the questions on the history don’t fit, if there’s something in there I think it doesn’t fit in there, [such as] they may have already have been referred to the department ten years ago and had treatment, there’s nowhere to put that, but I can put it in the free text. (Interview following teledermatology clinic)

Nurse02: [use of free text box].. for example, I’m trying to think of someone I’ve seen today,… a chap who was concerned about a lesion on his scalp. There was nowhere in the set text for me to put down that he’s worked abroad, he was in the Navy, he was concerned because his dad has got skin cancer, had two skin cancers removed. So it’s things like that, additional information, which I’ve not been able to put anywhere else. And the patient’s point of view, I put down he was really concerned about this and I also gave him, because he was going on holiday, some protection advice. (interview following teledermatology clinic)

incompleteness and heterogeneity are key characteristics of the practice of medicine action isn’t or can’t be accomplished by finding more and better ways of mobilising archival information.

Whether the data are more accurate or reliable than the information contained in the paper record is open to question, since practitioners are no longer able to preserve the uncertainty and ambivalence which is central to much medical decision making… (Heath C & Luff P, Technology in Action, 2000)

Information technology and intimacy in anaesthesia and teledermatology we saw practitioners working intimately with machines this intimacy comes about through the labour of ‘making things work’, enabling action, rather than proving every point explicitly in sequence.

MacKenzie, D, (2001) Mechanising Proof: Computing, Risk and Trust Those who lack intimacy with the machine cannot be expected a priori to have insight into its limitations.

uncertainty politicians and managers express utopian certainties about the transformational power of healthcare information systems, at a distance from practice ‘dangerously canonical’ practitioners working with the systems talk in more measured terms, a scepticism drawn from intimacy – ‘wisdom’ underpins safety

innovation vs ‘the new’? healthcare information is incomplete and changing (Moser & Law 2006) rather than archival the innovation lies in keeping things working, keeping the service running through and around the ‘new’ technology (Suchman & Bishop 2000)

in theory medicine is being informatised in practice – not that much