Sorting out the information ‘Wheat from the Chaff’

16571920_s For the last decade, or so it seems, in my professional technology life, we have been talking about the holy grail of interoperability. So, what on earth does that mean? I’m basically a non-techie and my understanding of interoperability is that we can send information around the system, from one place to another, and when it sets off it doesn’t lose any meaning as its transferred and arrives with its meaning intact. In other words, the information is available and understood by the person that receives it and this is as the sender intended. Standards are key to making this happen and at last this is starting to happen. Have a look at the PRSB and Interopen.
Wow, I mean that means we can share information using standards and free up information that have traditionally been effectively locked behind electronic walls.

Freeing up information to flow around the system comes with some issues and in our endeavours to make it flow I am not sure we have thought through some of the consequences of all this data arriving at the point of care, in a multi-professional context, that centres around the care of an individual person.

Back in the olden days, when I was a ward sister and subsequently investigating complaints, I was often faced with large piles of paper notes about an individual patient. They were hard to plough through. There were some tricks that everyone used to use to get to the essence of what had been happening to a patient. At the back of the notes there were, usually in reverse date order, a set of correspondence between different doctors; an admission referral, a discharge summary, letters from clinic and so it went on. That’s where you started to get the best picture, a timeline, of what had been going on.

I know that we are working on standards that provide similar summaries of episodes of care which is brilliant. They will provide a much-needed way of navigating a person’s care in a timeline.

The challenge comes for those areas and professions who may be less practiced and used to summarisation; nursing for example.
hydrant There is a risk that all this machine processable information will flow into records (maybe alongside information sent by patients too) and we won’t be able to see the wood for the trees! Imagine if you had to review every piece of information in one of those fat sets of paper notes and you were on a busy MAU. It will be like the quote from Mitchell Kapor: ‘Getting information of the internet is like drinking from a fire hydrant’. How will we ever know what is important and what can be left?
Some professionals already have solved this problem or at least started to do so. GPs, the most experienced Health Care Professionals in using electronic records, already understand the value of summaries and lists but these operate in one environment only.

How are we going to prevent this information that will be flowing around systems becoming overwhelming? How will we make it so that clinical staff do not feel the need to review every piece of information? Where will we stand if we fail to review once piece of information amongst the many?

It seems to me that we might need to think about a longitudinal record for a citizen and stop seeing records as a patchwork of systems connected by standards. If we fail to summarise, to prioritise, and to recognise that everyone can’t read everything, how are we going to sort out the most useful information from the most mundane? How can machine processing help us (or can it)? How will we share the piles of data across all the professions?

What I do know is that this affects the way nurses and probably others need to think about the way we keep records. If we don’t we will drown in a deluge of electronic information and potentially be no better off than we are today.

Perhaps we can just let the citizen take responsibility for the timeline? But that probably won’t work for everyone.

What do you think? Have I got this all wrong?

39321270 - folder and stethoscope (clipping path included)

Cassandra and Nursing Terminology

Cassandra1 I 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.

Florence I 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?

A Nurse who has ‘Sold her Soul’?

When I was 26 I decided that I wanted to do a different nursing role and I became a research nurse for a programme that aimed to develop an quality of life assessment tool. I don’t think you can do much more patient centred work than this but despite that my father-in-law told me that I had ‘sold my soul’ and all ‘proper’ nurses were at the bedside and I was wasting the money that had been invested in my training. This was an ongoing debate between us but essentially I ignored him. This wasn’t the last time similar things would be said to me in my career. Later when I went to help to set up the NHS Direct service I was told by other nurses that I had ruined my career and I would never get another job. It was clear to me that for my father-in-law and for these other people the professional identity of a nurse was firmly uniformed and at the bedside.

I recently read an interesting paper that seeks to understand issues of professional identity for medical professionals who have adopted a managerial leadership role. This strikes me as in many ways like a nurse who has moved into new professional contexts away from the bedside. I thought it would be interesting to use the framework identified in this work for personal reflection on my career and professional identity as a nurse, manager and informatics specialist. Be prepared! If you read the whole paper I found it a hard read, reaching as it does into sociology and organisational theory.

So here it is – I will try to summarise what I see as the key points from the paper. I have taken the key conceptual points but not dived into the full conceptual framework (I suspect that would be a PhD!).

13971283 - two halves of the paper masks on a wooden background The paper ‘Hybrid Manager- Professionals’ Identity Work: the Maintenance and Hybridization of Medical Professionalism in Managerial Contexts’ (McGivern et al 2015) concludes that there are two types of storylines that are used around medical managerial roles i.e. roles when a doctor adopts a managerial role in addition to that of a medic. The article used comparable data from three studies of organisational change in the NHS and used identity theory work in order to create a new classification framework.

The first role identified is doctors who are described as ‘incidental hybrids’, those who find themselves in positions of management responsibility but do this through a sense of responsibility or duty. They are likely to maintain strong personal professional identity, continuing to see themselves principally as part of their professional group, managing the same traditional professional individual and group norms. They usually position themselves in these roles in a transitory way often by obligation. These types of clinical managers usually represent and protect institutionalised professionalism. They seek to align themselves to their professional identity and group first and may down play the managerial aspects of their role. They are likely to adopt a ‘representation’ position in relation to their profession.

In contrast, ‘willing hybrids’ are those professionals who have adopted and integrated a broader professional identity earlier in their careers or later in response to professional identity challenges; they have thought through the breadth of professionalism and see it extending beyond that of the traditional model and have embraced this identity. They have a different professional narrative to a traditional one, often formed by mentors and role models, where they have identified and sought to resolve professional identity conflicts and embrace the hybrid role. An example of this might be the tension between the attention to a single patient versus the needs of a population, weighing up the collective good versus individual need or where there is a need for professionals to align themselves with managers rather than seeking purely a professional allegiance. Willing clinical managers often position themselves as a professional elite seeing the management of others and/or services as a more challenging role. These are professionals who have embraced a permanent hybrid state. They are likely to be misaligned with traditional models of professionalism by engaging with others outside of the traditional professional hierarchy, for example managers, to the extent that others may accuse them of ‘moving to the dark side’.

I found this article to be really thought provoking making me reflect on my role in relation to nursing professionalism and my career.

Through my career I have sought managerial roles where the impact of what I do extends beyond that of individual patients and have been accused in the past of having ‘sold my soul (to management)’ and yet I still feel firmly placed in a nursing professional context. I think I have managed to reconcile my adopted roles and integrate these with my professional identity. Early in my career I admired nurses who were visible change agents, doing new things and leading us to new thinking. My move to being a hybrid professional came reasonably early in my career.

My extension of thinking around the contribution of nursing and the broader professional agenda was influenced by people in novel and innovative roles. Two examples spring to mind: Alison Kitson who I met in the late 80s/early 90s when she was working on standards of care – I so wanted to work on similar creative and innovative work. Similarly, in the early 1990s I went to Leicester Royal Infirmary and met Helen Bevan (@helenbevan) who was then leading innovative service improvement initiatives – I can remember wanting exactly that job. It’s funny but I now know Helen and although my visit is very memorable to me I know she can’t remember it! Finally in the early 2000s I was very inspired by Maxine Craig (@maxine_craig) who was a nurse who had already taken a step towards a realignment of her professional identity and I was in awe of the improvement work she was doing and again I remember thinking I really wanted her job! Of course I never did get any of those service improvement roles despite trying – sometimes its being in the right place at the right time!

I still feel hurt when others make the observation that I am ‘no longer a real nurse’ as in my reflection of professional and personal identity I believe that it is possible to both be a nursing professional but one whose role extends beyond that of direct patient care. I see this accusation as similar to those who accuse doctors in management as having moved to the ‘dark side’.

My reflection is that nurses who work in informatics or technology roles also have adopted hybrid professional roles where there is the necessity to blend professional identity and influence change at scale, including influencing what we might consider to be out-dated and old-fashioned professional nursing practices.

15350566 - people-puzzle isolated on a white I can also see how this is challenging and why professionals with these blended professional identities seek to join a new professional tribe, where the issues of professional identity management and norms can be more safely explored. These tribes also create alternative role models and mentors. I feel that this is emerging in the informatics community where they have even selected to embark on a journey of professionalisation.

who are you My conclusion is that I have a tendency toward being a willing hybrid who elected to adopt a role that seeks to combine professional identity to a specialist informatics role. I believe that it is possible to hold the values of patient driven care at a population level beyond that of meeting the needs of an individual patient.

The paper discusses in more detail the impact of hybrid professionals and identity work and I recommend it as reading in particular for those who find themselves in non-traditional professional roles.

Thanks to Pete Thomond (@pete.Thomond) , Managing Director, CleverTogether, for bringing this paper to my attention but also for his analysis of the paper which helped to form my reflections.

I believe that the phrase ‘Once a nurse, always a nurse!’ is true but it is possible to adopt a hybrid professional identity; these hybrid roles, that push the boundaries of traditional professionalism, create the climate for professional tensions that lead to change, modernisation and improvement.

But what IS nursing?

Training_Queen's_Nurses-_District_Nurse_Training_at_the_Queen's_Institute_of_District_Nursing,_Guildford,_Surrey,_England,_UK,_1944_D23118

By Ministry of Information Photo Division Photographer [Public domain], via Wikimedia Commons

My husband often says to me ‘but what IS nursing?’. To be honest I struggle to answer his question without distilling my profession down to a set of tasks that don’t really get to the heart of it and I think that is an issue – we don’t actually know how to properly articulate what we do.

This poses a challenge when you are trying to implement electronic record systems to support the practice of nursing. Electronic systems respond well to lists and tables, check boxes and drop down lists. This is why electronic record systems meet our needs in terms of risk assessment and listing things but perhaps are less well able to respond to the more complex and less visible work of nurses.

Traditionally software systems are created based on what could be called ‘user requirements’. But if the users can’t clearly articulate what they need, then the developers will struggle to respond. In my experience nurses can describe a risk assessment form and probably paper forms they use but really struggle to describe the more complex aspects of what they do. The result? System developers develop task based record systems that drive nurses towards the less complex work and fail to record the more complex and less visible work of nurses.

The work by Davina Allen – The invisible work of nurses: hospitals, organisation and healthcare (2014) – should start us to think more about how we describe the complex work we do but it’s a challenging conversation – complex and abstract and we are often too busy to engage. Allen says: ‘Nurses, it is argued, can be understood as focal actors in health systems and through myriad processes of ‘translational mobilisation’ sustain the networks through which care is organised.’

Perhaps it’s time to look again at the models of nursing we build systems on. Nursing care planning doesn’t do it for me, again it drives us to simplify and describe what we do merely as a set of tasks. Perhaps natural language processing is likely to offer more to nurses than we might think and we should engage with the developers of these type of solutions and resist the drive towards solutions that push us towards over simplification.

16571920_s I would argue that not everything we do can be entered as structured text of check boxes. If we do this pushes us towards task based thinking. We need better than this if we are to really recognise what nursing really is and build the electronic record systems nurses deserve.

Allen, Davina Ann 2014. The invisible work of nurses: hospitals, organisation and healthcare. New York: Routledge.

Digital Health – Big data, big business…big problems?

technology future On 26th April I was invited to join the debate facilitated by mHabitat and Leeds Beckett University as part of the Leeds digital festival. I accepted with some trepidation – I have never participated in this way in a debate before. The motion was:

‘the house believes that digital innovation in health is benefitting big business over patients’

I was to speak against the motion and was a seconder.

I really enjoyed the experience. I realise I can be quite competitive and that comes out, even when its merely an academic exercise. We did manage to sway the audience with the end result being 15:18. I may have cheated slightly at the end by whipping my insulin pump out of my bra and waving it around as an example of digital innovation 😉

The debate led me to think about the importance of ethics in business and in particular the health sector. I do believe we need digital innovation but we need to be sure we act this out with a clear focus on an ethical approach to technology and the use of data. I am not sure we yet have this sussed.

Here are my words:

‘To remind you the motion is that the house believes that digital innovation in health is benefitting big business over patients. It’s my task to persuade you that this is not the case!

My proposition is that the relationship between big business and patients in relation to digital innovation is one of interdependency and not supremacy of business over patients, that is, that big business and patients have a mutual reliance in successful digital innovation.

I think most people would agree that innovation is only possible when innovators successfully fill a need or solve a problem. I would suggest that those gaps and needs belong to patients and if big business fails to seek these out and productively meet these needs then their products will fail and join the lists of 1000s of unsuccessful apps piled on the mountain of useless apps. We know that 90% of app install are generated by only 10% of apps – this means that understanding the needs of patients and meeting them is crucial to a successful business strategy; its a mutually dependent relationship.

In the past the biggest buyers of health technologies were health systems but today things have changed. According to Ofcom (2015) 66% of adults carry a smart phone. This shifts the technology infrastructure to the pockets of actual or potential patients – I have more computing power in my handbag than I would ever have dreamed possible in 1979, the year I was diagnosed as having T1 Diabetes. But I also have buying power as the cost of technology has plummeted; the ability to chose and rate devices in increasingly transparent way is becoming the norm. To imply people are not able to chose and can be hoodwinked by big business is paternalistic and wrong. Meeting he needs of these increasingly tough customers is a priority for the technology providers. It’s tough out there with patients even going so far as to share recommendations!

The public need to work with technology companies. We need them to be successful. We need them to invest in creating successful innovative products that meet our needs. High quality technology can take years of development and investment. If tech companies are to invest they need to invest in successful products – of course that’s those that meet the needs of patients (public and citizens).

But of course for those cynics out there you may think that it’s still just about the money….. well that maybe true but existing regulation and rigorous evaluation that needs to take place in health settings puts some brakes on industry – some might say it actually creates barriers to entry. I might say that the rigor of assessment through mechanisms such as clinical trials means that big business has to care.

So my conclusion is that its a mutual relationship with power held in both camps, where the only way for big business to meet the needs of patients is to fill the gaps and this needs to be done in partnership with patients, or even by patients, who, god forbid, actually lead the technology innovation; innovation such as #nightscout and the #wearenotwaiting project.

Finally to quote Ghandi (because in a debate always end with a quote!!)

‘It is difficult, but not impossible to conduct strictly honest business’ (the emphasis is mine)

Information Governance Ironies

Going to the hospital always frustrates me but it is an opportunity to watch – people and processes, communication and clues on culture.

I’m actually writing this sat patiently in the waiting area – we have just been told the clinic is running more than an hour late. So I watch people come and people go.

Last time I was here I wrote a blog about information governance, about how, when you arrive in clinic, you have to declare all your personal details to the full waiting room. I did give them this feedback by the way and I also recognize the challenges in the clinic area. Today the same ritual continues.

[pause – I’ve been in to see the doctor who was lovely. But I’m back for another wait…. so I continue…..]

I am not sure that declaring your personal identifiable information in public is best IG culture.

The next thing made me smile. A man with a big trolley arrives in the clinic. The trolley is piled with notes – over it is a sheet. He gallantly throws it back to reveal and remove a set of notes. Then back again when he is done. Either he is keeping the dust off or he is trying to protect them from view. I gaze on as people adjacent to him continue to declare their full name, address, date of birth and GP including the GPs address!

Meanwhile I overhear someone near me, after seeing the man with the notes tell a story: ‘eeee*’ says the lady to her (assumed) daughter: ‘you will never guess what they told me about my notes?’ The daughter asks for more information. She continues ‘they parceled mine up into a brown paper bag and sealed it with tape when I was going for my scan. I asked them why. They are MY notes after all. She told me they sealed them so I couldn’t open them as they could charge me £15 to look at my notes. This was to stop me looking at them!’

I listen and I watch and I despair.

Nothing really ever changes very much.

I’m being called again…..

*’eeeee’ is a Yorkshire expression that preceeds an interesting fact!

Passing on the baton

For any of you who know me today, you might find this hard to believe, but I was often picked for the 4×4 100m relay team at school. OK – I wasn’t the first choice, probably the fourth – but, hey, chosen I was, and I learnt how to pass the baton.

For those of you who have ever run in relay you might remember being taught how purposeful that baton passing on needs to be; a process of firmly slapping the baton into the hands of the recipient, so they know they have got it and they can confidently stretch and run to the end of their leg. As I was often the second or third to run I was both the ‘receiver’ and ‘passer’ of the baton. Being passed the baton as efficiently and effectively as possible with no margins for error is a learnt skill and although my speed might not have always been what they hoped I don’t remember having a problem with baton passing.

So here I am many years later reflecting that now is the time to start to think about my baton passing technique in earnest again but it’s a slightly different race.

I was always ambitious and serious. Even when I was a student nurse, I secretly wanted to be the nursing officer or manager because I believed that way I had more influence over what happened to patients. I was shrewd, I knew that managers wielded the power to make a positive difference. I then went on to make some less orthodox choices, still related to trying to change things, and in many ways that’s how I ended up in informatics, I believed (and still do even more so) that information and technology can help citizens and patients for good.

But I find myself at a time in my career when I’m thinking differently about the future, having conversations with friends saying things like ‘I have one big job left in me’, talking in ways I have never spoken before, as if the end is in sight. Sounds dramatic? Feels it too and slightly scary.

Perhaps its natural progression as I gaze forwards to times when I have more time to choose what I do and where I give my time and effort to making a difference in other ways – I don’t mean not working but I do mean working in different ways.

What I know is that this means I need to brush up on baton passing on again. If I hold any knowledge and skills how can I pass them on; how can I baton pass without taking my eye off the forwards race and still keep running as fast as I can?

I have written about eldership before and my thoughts keep coming back to the same thoughts. How can I help the people picking up the race beyond me? How can I make sure we don’t stall and drop any batons?

Supporting and investing in leaders of the future is what I need to do but it’s not always easy. Broach a conversation about succession planning and people gaze at you as if you are giving up, rolling over and lack ambition – I’m not and I don’t. What I am doing is adjusting my focus, making sure I pass my baton on. Informatics is still hard, the hardest gig I have ever had, in a profession that, in the main, still seems to kick back against it despite predictions that digital is part of the future of health. So I’m focussed on finding the nursing digital leaders who I can pass the baton on to, but it’s a long time since I’ve passed any batons so I may be a bit clumsy at first but I will improve so watch out… I could be passing the baton to you! 😉

Thank goodness it was ophthalmology clinic and not sexual health.

I have lost many hours of my life talking about Information Governance (IG) and to make it worse it is not the subject that makes my heart sing.

I worked on the National Programme for IT and I have to say, despite what people might say, Information Governance was taken very seriously. So much so that the technical solutions that we worked on to create the best possible situations for holding and sharing the very sensitive information about people became increasingly elaborate and in many cases the solutions themselves were beyond my understanding. I think if we fell into a trap it was that one about increasing complexity making the issue worse, not better, and that we should have gone back to the citizen and kept it very simple.

We had complex use cases that tried to cover every possible sensitive scenario and tried hard to find solutions to them all.

It was hard and not very enjoyable work. But I do think we tried, we tried really hard to make sure it was the best it could be. I’m not sure we succeeded – my test for this is whether the debates have abated, they have not – but I know we put in much determined effort. I was glad when I moved onto other more interesting and engaging work for me.

I know IG is a sensitive issue. I get it. I do my training every year and I am clear about my personal responsibilities. I have read Caldicott 2 and I understand not only my responsibility to protect information but also my duty to share when it the best for the patient.

I contrast this effort and experience with my visit to clinic on Friday which I tweeted about at the time. I arrived to the reception desk, in front of a very full, busy waiting area. The seats face the place you stand to book in and are actually quite close. The receptionist is lovely. Both this time and the last time I attended the same clinic I watched her offer very compassionate help to a number of people. But the booking in process stinks! I was asked for my name, address, date of birth and GP in front of the full waiting room; everyone must have been able to hear. I certainly heard every person who followed me recite their information.

I don’t think its OK to blame technology or the people who work in informatics and this feels like where the debates circle. I understand that electronic information can be accessed and shared potentially more widely than that single clinic with the 25 people who were sat observing but I have to say these are people who may well know me, my friends or my family, as they are local. Thank goodness it was ophthalmology clinic and not sexual health.

I accurately gave the feedback about my experience in the exceedingly small feedback box on the friends and family card including the feedback about the lovely receptionist.

Information governance is not just about IT!

Big Data – Orwell or Huxley

Big data is an all-encompassing term for any collection of data sets so large and complex that it becomes difficult to process using traditional data processing applications. The challenges include analysis, capture, curation, search, sharing, storage, transfer, visualization, and privacy violations.

en.wikipedia.org/wiki/Big_data

In my world it seems like everyone is talking about big data but when I move out of my specialist world and into the more ‘normal’ NHS front-line, and rub shoulders with nurses and other health care professionals, it doesn’t seem to have entered their world at all. But in truth big data is everything about their world – in future it could have a profound effect on care and everyone will have a role to play.

What is it?

Big data is really just lots and lots of data, from different places, that is mashed together and then analysed. It has become increasingly possible to understand data as more sophisticated computing power has come along. Modern computing power allows us to analyse what would have seemed impossible in the past. Now we can also store volumes of data that would have seemed impossible not so many years ago. We can now analyse data that is less well structured and still make it meaningful, especially by spotting patterns and trends that can then lead us to more detailed analysis.

I liken it to those fancy scanners they use on ‘time team’. The scanners give you clues what might have been underground but actually until you do the digging you may not be able to make real sense of it. Like the scanners big data can help you to see interesting patterns but often it needs much closer scrutiny – it takes a bit of digging to really understand. But if you couldn’t do the scanning you would never know there was anything interesting underground. Big data allows you to create new hypotheses and spot new relationships in care and treatments.

Of course big data isn’t just used in healthcare, it can be used in so many areas of life. Commercial companies are keen to tap into it to give them an edge to understand, for example, our purchasing behaviours; sports men and women can use it to improve performance; and we can use it in education to better understand how we develop and learn new skills. In all these areas it has the potential to transform and make a real difference. In fact it has potential in so many areas of our lives.

Why does it matter?

In healthcare it matters because the data may have the clues to many disease processes that in the past have eluded our understanding. I have had type 1 Diabetes for nearly 35 years and in truth it feels like there has been very little progress in our understanding of the ‘why’ of Diabetes. Yes, treatments have improved but it often feels like a crude guessing game – and I apologise for that statement to all the wonderful scientists working in the field but I think big data might help them to get to the point more quickly.

The very precious nature of healthcare data

Of course any debate about access and storage of healthcare data is rightly heated and contested. Data about your health is one of the most personal aspects of your life and most people have a view about what it can be used for and who should have access to it. I agree that I should have some control but I really do want someone to find a cure for Diabetes. If I thought gifting my data, with some controls for privacy, would help to stop another young person at 16, as I was, finding out they had to face a lifetime of Diabetes I would do it gladly and willingly. Yet the debate about privacy and confidentiality continues to rage in the public domain. We need to get this right – no excuses and no easy options; protecting the rights of individuals goes without saying.

If you are interested in what people who have chronic conditions want to use their data for then ‘Patients Like Me’ is a great case study to look at. I know that the data belongs to those individuals and they have the right to do with it what they will. I do not want this post to be hi-jacked by the issue of privacy or confidentiality, nor am I saying it doesn’t matter – I just believe there are also other considerations to think about.

http://www.technologyreview.com/view/526266/patientslikeme-gives-genentech-full-access/

Data quality and responsibility

For practitioners big data does have an impact. Not only has it got the potential to transform how we deliver care in the future but practitioners have a responsibility to ensure the data they collect is high quality. In the past many records were rarely reviewed and languished for decades in medical records libraries in the bowels of hospitals. Now, and in the future, information we record will have a different visibility and transparency and we would do well to remember this.

Skills we will need

So the brave new world demands that we also have new skills. Being data savvy will, I believe, become a basic skill expected of people who work in the system and will go beyond simple statistics and the ability to use spread-sheets. We need skilled specialists too, people who can really help us to get to the nub of the data meaning.

Moving from knowledge to wisdom

But the most important addition we will all make to the big data debate is that of providing the context. Moving from knowing facts to a possessing wisdom requires us to throw upon the debate the light of truth and add our tacit knowledge and experience. It is people who provide this context, the insights and the meaning, turning facts into knowledge and then applying this to achieve greater wisdom; an endeavour we should all be contributing to. Here I mean ‘everyone’ – I don’t mean just people who work in systems, I mean just that: ‘everyone’. It is only if we have this whole context will we really be able to take the meaning from the data and take the steps we need to real wisdom.

Watch this TedTalk by Susan Etlinger to understand why big data is a journey we should all be engaged with. The title of my blog relates directly to her brilliant talk:

	David Neal on Speaking the Right Language –…
	bruceelliottuk on Speaking the Right Language –…
	Lindsey on Speaking the Right Language –…
	fionacarey2000 on A tiny flickering light
	aqasaxman on A tiny flickering light

anniecoops

The thoughts of a nurse with type 1 diabetes

Category Archives: Informatics