Cassandra and Nursing Terminology

Cassandra1I was once told I was like Cassandra.

I had to go and look up what on earth that meant. If you don’t know the story of Cassandra, she was cursed by the God Apollo who gave her the power of prophecy but when she refused his seduction he spat in her mouth, so people didn’t believe what she told them. She could speak prophecies that no one believed. In modern use her name is used to indicate someone whose accurate prophecies are not believed by those around them.

As I am getting nearer the end of my career I again feel a similar frustration about some of the things I see in nursing and my inability to help others to see what I can see. Perhaps I am not wise enough to speak prophecies, nor clever enough to explain what I think I see, but I do not seem to be able to explain my views to other nurses so that they take what I am saying seriously.

What is it I can see?

Many years ago, when I worked on wards, in the morning, at the end of a night shift, if the night had been uneventful for a patient we would write ‘Slept well’ in the patient’s record. In those days it was recorded in a Kardex system, on paper. I know that most of the information I recorded will have never been looked at again, it will have disappeared into the paper record and have added no value as time passed. Its half- life will have deteriorated very quickly. In the brave new digital world, data that we enter in record systems does not decay in the same way; data maintains its value and potentially has value beyond that of the individual’s care. The emergence of big data, machine learning and artificial intelligence (AI) mean that everything we record has the potential to be re-used.

This means that nursing must get serious about data quality.

If we don’t do this, we will be making decisions based on poor quality information. As Professor Alison Leary (@Alisonleary) says #GIGO or ‘garbage in, garbage out’. Sometimes this might not matter but in the future when we are using information for clinical decision support, for example, it might matter a great deal.

39321270 - folder and stethoscope (clipping path included)I also believe that merely ensuring that the data we enter is accurate and timely is only part of the story. We must get serious about information standards and the way we express what we do through a standard nursing terminology. What sorts of things do I mean? We need standards for how we record a patient’s weight across systems, as it could be used to calculate a dose of a medication. We need to ensure we consistently record nursing observations such as pressure ulcers, so we can measure improvement and compare across systems/organisations. We need to ensure we express care requirements in a standard way so that when we communicate across organisational boundaries and don’t lose meaning.

We need national nursing information standards that we can apply across all professional practice that will enable us to measure nursing outcomes, compare performance, share information and, for the future, provide data that will support accurate AI.  A wonderful informatics nurse called Anne Casey wrote about some of this in an RCN paper ‘Making Nursing Visible’ (I can’t find the date of publication, but the review date is set at 2014). Anne’s paper is still true today and indeed I can see an even greater imperative. We need to do this for the whole profession; if we continue to believe that each organisation is a digital island, with its on special requirements and its own way of recording nursing practice, we will fail to capitalise on the potential data offers nursing.  Exactly how many versions of a fluid balance chart do we need to create?

The doctors are much further on with this agenda and indeed the Allied Health Professional Community too are making progress. In nursing a small number of senior nurses have more vision, usually where electronic nursing records are becoming more mature. They can see the power of structured data about nursing. The trouble is we need to do comprehensively across the profession and we need to agree standards before we digitise, so we can embed those standards and terms in the systems from the start.

FlorenceI don’t see many people listening; it’s a complicated story that uses strange words such as terminology and classification systems. Nurses who might understand are often still at the margins of the profession; nursing who work in informatics are increasingly sought but still do not have high status, unlike in the US where they seem to value nurses with informatics experience more highly and the presence of a Chief Nursing Information Officer (CNIO) is much more common.

This is not a technology issue, it’s a nursing one. Whether we chose NANDA or the International Classification of Nursing Practice (ICNP), or another system, do nurses have the vision to see that we need standards, so we can look at outcomes, share data and in future use it for AI.

Do we understand that the data we record may contribute to the future care of other patients beyond the patient we are caring for now, unlike my ‘Slept well’ notes of the past?

I hope so, I hope that for once my prophecy; that nursing is not taking this agenda seriously and may be leaving it too late, will not come true. I have been trying unsuccessfully for years to get the profession to listen.  I think Florence Nightingale with her interest in data would have seen the need for a standard nursing terminology.

Let me know if you are interested in this agenda. I’m not sure what we can do but more voices might make a difference #nursingterminology

Links/further reading:

Why use ICNP?

CNC – Overview: Nursing Interventions Classification (NIC)

What is nursing diagnosis and why should I care?

What is Deep Mind Health?





People Drive Digital Reflections

networkI have been to NHS EXPO today. As always it was great to meet lots of people I have met and worked with over a number of years; I love seeing them, giving them a hug and re-connecting with them (you all know who you are). It is one of the privileges of my working life that I have met so many fabulous people.

Today was interesting for me as I didn’t go to EXPO in my professional capacity but in a personal one, as someone who has an interest in digital innovation but from the perspective of a citizen and patient and today felt very different – but is it EXPO that has changed or me?

PDDigitalToday I briefly presented with Victoria Betton and Mark Brown the work we have done on People Driven Digital and the PDD Awards (HT to the others too Michael Seres, Kat McComack). I realised that I had changed from a year ago.

I spent many years as a nurse giving patients advice and information. We thought it was the right thing to do and of course it is but it’s also paternalistic, based on the assumption that ‘we’ know and ‘they’ don’t.

Over the last year my experiences of working in collaboration with other people like my fellow collaborators for #PDDigital, and many others in my social network with Diabetes, has made me realise that the system doesn’t know what problems people face as intimately as they do. We can make assumptions, we can guess and in doing so we may well get it wrong; we may hit the target and miss the point. Mark spoke eloquently today (you can read what he said here and it’s well worth a read) about focussing on trying to find digital solutions to those issues that really matter to people, not necessarily the big things but those that in people’s lives make a real difference. You can see our presentation here

So today, whilst I wandered around EXPO, I reflected on what felt ‘real’ and what maybe mattered the most. There was little evidence of people driving solutions and creating ideas and I realised I had changed. I have come to realise that unless we engage at the start with the citizens, we are unlikely to make the differences we need to make. We might create elaborate solutions but may completely miss the point. We need People Driven Digital Innovation.

pump openerI have an example: I was a grateful receiver of a new insulin pump a few months ago. It has a snazzy screen and some new functionality that means if you are a user of a continuous glucose monitor (I am not funded to be one) then it will switch off the delivery of insulin if your blood glucose goes too low – very clever indeed. But what was it that delighted me when I collected my pump? On my old pump, in order to access the battery to replace it (yes insulin pump are powered by a traditional AA battery!!) I had to carry a 20p coin in my bag. It’s the only reliable way to be able to open the battery space – it’s tricky but fairly crucial to be able to get in! On my new pump there is a removable clip that had a snazzy little device on the end that enables you to open the battery space. A simple remoulding of the clip – inexpensive and functional – I know, I know, so simple – but it was the snazzy solution for the battery opener that delighted me. A small but delightful improvement and now I don’t worry about 20p pieces. Let’s try focussing on the small things that might matter to people.

How do you think we could develop the ideas from #PDDigital? Let us know.