Diabetes and language used in healthcare and research

NB. Likely a few more links to be added in, I am working on a slightly uncooperative wifi network at the moment

I took part in a work-related Twitter chat last night, about avoiding errors in the self-management of diabetes.

The project I work on, CHI+MED, is looking at ways of making interactive medical devices safer but to do this we don't just study the devices themselves but also the people who use them and the systems that the machines are used in - basically it's a "sociotechnical" model sort of thing.

People know that they make errors in using machines. Sometimes the system helps them to prevent this, for example I've made good use of the delete key while typing this post, someone had the good sense to add one in to keyboard design. Sometimes people develop their own cunning plans to prevent errors. These are 'resilience strategies' (strategies that make them resilient to error) that are either generated by the person themselves or picked up from colleagues - they're rarely 'in the instruction manual' and they're not part of any official training.

But they can be really useful - both to other people who are using that medical device, but also to researchers who want to find out the strategies people employ to prevent mishaps.

And that's what the chat was about - what are the sorts of errors that people with diabetes (particularly Type 1 diabetes who are regularly monitoring their blood glucose levels and adjusting doses of injected insulin) might make and what tricks have they developed to try and avoid making an error.

One interesting things that came up was the language used by error researchers and how this might conflict with that used by people with diabetes or diabetes researchers. Dom (a colleague on CHI+MED who was co-hosting the Tweetchat with @OurDiabetes) uses terms like slip, mistake and violation which have precise meanings in the context of human factors and ergonomics research.

One of the people participating in the chat felt that the word violation was a bit of a strong term - it certainly carries negative connotations. Suzette Woodward has a helpful post explaining some of the examples of violations (eg of policies) in a healthcare setting: Working to rule?

Language used in different disciplines often has the potential to offend, or even just misfire, when heard by other people out of context.

I remember, when working in a GPs' surgery 10 years ago, reading that "the patient denied having any chest pains" and being amused at the implication that the doctor knew full well that the patient was having chest pains but that the patient wasn't having any of it. That's not what it means of course, it just seemed a strange way to say "the patient reported that he was not experiencing any chest pains" but "deny" carries other meanings to those not immersed in this use of language.

Similarly there are terms used in healthcare research looking at situations where medication is just not taken. It might be forgotten, lost (stolen?), unusable (damaged) and so not used. Equally it might be intentionally not used.

The various terms I came across that meant "not taking his or her medication" were non-compliance, non-adherence and non-concordance. All mean more or less the same thing but non-compliant sounds a bit more "naughty diabetic*" and "non-concordance" suggests a certain disagreement between patient and doctor.

*I do of course mean "naughty person with diabetes" ;-)

Further reading

• Errordiary learning zone / brain food - explains why Dom is collecting errors for research purposes
• Can resilience strategies help with diabetes management? - from Dom's own blog
• Can Errordiary be used to support patient safety education? - from Errordiary
• Unintentional non-adherence: can a spoon full of resilience help the medicine go down? (open access, full paper freely available) by Dominic Furniss, Nick Barber, Imogen Lyons, Lina Eliasson and Ann Blandford. Dom and Ann are both on the CHI+MED project (Ann is both the Principal Investigator (PI) at the UCL site and PI of the CHI+MED project overall). BMJ Qual Saf doi:10.1136/bmjqs-2013-002276