Category Archives: digital

Sorting out the information ‘Wheat from the Chaff’


16571920_sFor 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.
hydrantThere 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


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?

 

 

 

Putting people at the heart of digital #PDDigital17


11845107 - circuit board with in heart shape patternHaving a good digital idea isn’t enough. Good ideas are all well and good but only if they solve a real problem. Knowing what problems people face in terms of their health and care can take real insight – a deep understanding of issues that are complex and very personal.  It’s also true that listening alone isn’t enough.

It’s possible if we don’t change the way we create digital solutions and we continue to create an environment where we go straight to what we believe is the solution then we may miss the point.  That’s where co-production could help but if we are not careful this term can become diluted and misused. I recommend reading this blog by Mark Brown to read a little bit more about what I mean. As Mark says ‘it’s really, really hard’. We talk about user research in digital but that’s just a type of listening hard and for me still doesn’t cut it.

So, what can we do to make more of a difference?

people-drive-digital#PDDigital set out to explore this idea believing that putting people at the heart of digital would have a positive influence on the use of digital and social for good in health and care.  #PDDigital stands for ‘People Drive Digital’. Drive in this context is a very important word: putting people at the centre isn’t enough. We need to really focus on the concept that people who use services have skills and insights that are unique and are assets in their own right. We need to break down the barriers between people who use services and professionals who work on solutions. It’s about partnerships and recognising where good ideas really come from and creating environments where they can thrive.

Co-production in a digital space means that we respect where these assets lie and #PDDigital has unearthed some great examples of solutions that have been developed in this way. But there is a problem still. Getting people with good ideas to the stage where their ideas can take flight and become real solutions is difficult.

giantlogo1This year the founders of #PPDigital, Victoria Betton, Roz Davies and myself have decided to bring #PDDigital closer to the other people that matter; the technical people who have great skills and entrepreneurs looking for fab ideas. We will be at the GIANT Health Event 2017 aiming to have new conversations with different people aiming to illuminate the importance of those ideas that arise at the heart of what really counts; the ideas and challenges faced by real people. We hope that by talking about the idea that the real insights are held by patients, carers and professionals caring directly for people, we have the best chance of making a digital difference.

Please come and join us at GIANT if you are interested in our ideas. We welcome everyone and we look forward to having some great conversations.

A Nurse who has ‘Sold her Soul’?


cropped-nursing-badge-e1398349876516.jpgWhen 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 backgroundThe 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 whiteI 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 youMy 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.

What does ‘frugal’ mean to you?


img_6503For me ‘frugal’ has a very personal meaning. I was brought up in a frugal household; rarely did we throw anything away. Recycling was an art; buttons cut off items of clothes that were worn out, then the cloth used for clippy rugs. Shirt collars and cuffs turned and boots and shoes re-heeled. Post war habits lived through my parents and grandparents.

Some of those habits have persisted into my adult life and my husband has much stronger frugal habits than I.  I delight in nice jam jars that I can reuse for jam and marmalade and I increasingly recycle ribbon from parcels and paper, if I consider it special. I find myself looking at buttons as having potential.  I sometimes reflect that I am turning into my Mum or Grandma!

My husband has a garage full of ‘stuff’. The pleasure he gets when we have a practical problem to solve and he says ‘ah, I have just the thing for that!’ and off he goes to return with a surprising solution, usually something I would have thrown away, something that we can repurpose.

So, what is frugal innovation?

‘Through minimising the use of resources in development, production and delivery, or by leveraging them in new ways, frugal innovation results in dramatically lower-cost products and services. Successful frugal innovations are not only low cost, but outperform the alternative, and can be made available at large scale. Often, but not always, frugal innovations have an explicitly social mission.’

Nesta 2016: See more here

So some of the aims of frugal innovation are the same as my parents or my husband; that is to use resources wisely and in unexpected ways for solutions that work well. Perhaps it is the very scarcity of resources that makes us more creative and focus on something unexpected that sorts out a problem.

I am really looking forward to the debate tomorrow for #PDDigital16 – this is the motion:

This house believes frugal innovation has the potential to create better solutions to citizen challenges in health and care than traditionally designed digital technologies

The debate will be streamed live so why not listen in to see if you can learn more about frugal innovation (follow #PDDigital16 for more information) and meanwhile here is a short video from RSA with Charles Leadbeater to whet your appetite!  How can we use the limitless opportunity we have to connect, to create solutions with scarce resources, for social purpose?

 

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Apps – hitting the target but missing the point? for #PDDigital16


52287225 - concept for mobile apps, flat design vector illustration.I had a developer say to me recently ‘It’s OK, we do lots of user research where we test our products and how well they work!’ – he was clearly proud of his product and through this research thought they were very well connected to their users. Clearly their plan couldn’t fail? Or could it?

I was less impressed. I was unclear if they understood what the issue was that they were trying to resolve and had made a huge leap to creating a solution that they were then going on to test. Their intentions were honest and good but I wonder if we can do better if we understand what it is products need to ‘do’ to help in the health system.

I also recently read this blog from Mike Fritz at Userzoom that eloquently describes the issue; fundamentally you can create a highly usable (probably very beautiful) application but it will possibly never get used, unless you understand utility.

41935551 - road sign to diabetes managementHaving Type 1 diabetes means I understand utility very well. There are hundreds of digital tools/apps available to me, a simple search in the apple app store shows the variety; carbohydrate counters, games, coaching, glucose monitoring. But the truth is, I only use one consistently and that’s an App called Carbs and Cals. It has a clear utility for me; it easily helps me to identify the carbohydrate content of food just by looking at things – no scales, just looking.

I think I am a reasonably activated patient, so why is it that I only use one app and does that make me different to everyone else? I think that the research is starting to show that most of us only use 5 apps that are not native to our device and if you think about your own use (Twitter, Instagram, Facebook, Whatsapp) you are likely not to have too much room in your smartphone life for much more than a very special few apps. Despite this the health system continues to see Apps as a potential solution to the challenges faced by health and care systems.

Potentially it’s a classic case of hitting the target but missing the point.

So how could we reverse this? How can we help to make sure technology offers valid usable utility solutions? I believe that utility is the key not beauty; we will tolerate poorer user interfaces to achieve beneficial utility. It’s about what it does to support and help people not whether it was merely a great idea in the mind of someone or has a very smart user interface. The best example for me of hitting the target but missing the point are Apps that ‘help’ people with Diabetes to monitor their blood glucose but require extra entry of information into a separate and standalone app… in the days of interoperable devices why would you bother? No one I know likes them or uses them in a sustained way. Their utility does not stack up.

So, if we are to capitalise on technology how might we do it, how might we find the pieces of utility that really help?

app-developmentThe answer for me lies in where the ideas and solutions arise. If we look to citizens and patients who have real skin in the game they will know where technology has real utility. From this, great designers and developers can collaborate with citizens and patients to create high utility AND high usability solutions. My view is that this type of ideas generation and co-production has the potential to create innovative scalable solutions. But only if we stop thinking the system knows best and properly tap into the ideas and creative thinking that sits behind People Drive Digital. Co-production in the digital development space could have real potential to help but it requires more working together to identify areas of potential utility and then combine these with fantastic design and development. We have the skills and talent – we just need more conversations.

Follow #PDDigital16 for more conversations.

More information here

people-drive-digital

 

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.

Sharing no more


Imagine this….

Woman aloneYou have had a really shit few years. The details don’t matter but suffice to say you feel you are moving on, you have met someone who you want to spend more time with and all of the things you have been through are being pushed back away somewhere quiet in your mind. You know you will need to talk about it at some point, after all its nothing to be ashamed of, but you are not ready. Your new partner doesn’t know about your loss and you are both enjoying the next phase of your life. You have decided to move in together and you have been clearing stuff out, sending old clothes and junk to the charity shop. Most of it you will never use again so you feel good pushing things into black bin liners and giving them away.

A few weeks later you are sat in bed on a Saturday morning having a lazy coffee when one of your friends messages you on Facebook. The next thing you know you notice you have a few messages which is unusual – you have an account on Facebook but you are not a big user as you are quite a private person really, but it just seems the thing to do right now. Your friend says have you seen the post of you on Facebook?

Loneliness empty benchYou open your Facebook timeline and staring back at you is a picture of yourself and David, before he died, when he was looking drawn and ill. The photo is a precious one but is not for sharing, yet here it was. You read the post and you realise that the precious memory stick that you kept all those memories on must have been left in one of the handbags you took to the charity shop and one of the assistants at the shop was trying to find the owner. You knew they were trying to be kind, to reunite you with your photos, but its unbearable.

You didn’t expect the next thing to happen either. Before you could blink an eye the post was being shared, posted and shared, posted and shared. The list of messages were people who recognised you and who wanted to bring the post to your attention.

You wanted it to stop. Your new partner had no idea about David and you weren’t ready to share the story.

The trouble is you just can’t stop it. The messages keep coming and no matter how often you ask someone to delete the post it carries on being shared. It is breaking your heart.

This isn’t a true story but the essence of it is true. I shared something on Facebook recently – I thought I was being kind and helpful and I had no idea what distress I would cause. The person who messaged me I don’t know them well but I could sense their hurt and distress. I removed my post but of course it was too late and I was just a link in a chain of many postings.

facebook likesThe lesson I learnt was that kind sharing acts can cause harm. I had no idea those photographs I shared would hurt but they did. We often talk about the negative aspects of sharing and I often see posts from teachers who are deliberately showing kids how far images can spread but I have shared things when I thought it was the ‘right’ thing to do. I won’t do this anymore. I have never really shared missing person pictures either and here is a great blog on why:

You never really know the back story and no matter how well intentioned you might be it can go wrong – so I will be sharing no more.

Anne

 

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)

 

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 http://thenewmentalhealth.org/?p=182 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.