Noise


I am often so very naive.  I know I am supposed to be an adult, who even has some semblance of a brain, but I am a marketer’s dream.

notificationsI have never considered social media noise before; never thought about how all the notifications were competing for my attention and how often I had got in to checking my phone.  It’s worse if I’m not focussed, so I can go all day at work and never look but one hint of a moment of boredom or procrastination and I’m there.  Cats and kittens always work…..

It was a presentation by Hany Rizk @Rizkhany last week that brought this in to sharp focus by showing this video.  I recommend that you watch it through to the end:

Also look at the website Time Well Spent

It got me thinking about how I manage my personal time and how I need to find some quieter spaces.  Hany managed to persuade me that I need to use settings better to manage my notifications and even switch off my phone (gulp).  I know, most of you are thinking; ‘where has she been????’

noiseI work in an environment where digital tools are seen as part of the future in the way we support health and well-being and I started to wonder how health related digital tools could compete with the existing noise.  How can we build tools that use notifications etc in a positive way, a way that enhances health related behaviours?  How can we compete with the noise of giants like Facebook and Instagram?  We need to think like Marketers!

If we are to build new digital tools that are successful and fit in with people’s lives we need to consider the noise that we create and how its positioned alongside the existing cacophony of social media.

I wonder who is thinking about that as they design new health tools.  I hope some clever people are!

52287225 - concept for mobile apps, flat design vector illustration.

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_sI 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 futureOn 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.matching

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.

knowledgeSo 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.

waiting chairsI’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.

notesThe 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.

clinic

I’m being called again…..

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

Passing on the baton


passing the batonFor 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.belt and badges

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! 😉hand waiting for baton

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.

computerI 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.

caldicottI 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.

waiting chairsI 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

big dataIn 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?

science dataIn 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

owl wiseBut 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: