When arguably the largest digital health vendor in the world starts to consider how they move to a new terminology for what they deliver we need to prick up our ears and at least understand what the noise is about; a Community Health Record (CHR) is now the direction of travel for EPIC one of the worlds largest digital health care organisations. In the same period the Secretary of State for Health and Social Care has begun to add some flesh to the digital vision he published earlier in the year, particularly around the state of the GP System in the UK and the desperate need for interoperability of the systems, ie. enabling the creation of a CHR in the NHS on a national scale.
I remember a pre-NPfIT world where the NHS had a choice of GP Systems from a vibrant market, and even when you were with a single vendor there was often a plethora of systems with a multitude of functionality levels available to you; who remembers EMIS LV, GV, PCS and Web all being on the market at the same time. SeeTec, Microtest, TPP, InPS, Torex and iSOFT all with the ability to deliver new exciting functionality and at the same time support legacy and green screen solutions. The move that we all took as NPfIT to rationalise the market was meant to modernise what was available, was meant to support innovation and create a new market place one where a CHR would be delivered. It didn’t it created a duopoly that has stifled innovation removed any kind of ‘start-up’ culture within the market place and disempowered much of the ‘family business’ loyalty that existed between vendor and GP. The GP element of a CHR can now only be delivered by moving to a single supplier base across a region and even then only through the movement of information in ‘old technology ways’ in the most part. What were we thinking!
Matt Hancock Secretary of State said the week before Christmas,:
“Too often the IT used by GPs in the NHS – like other NHS technology – is out of date: it frustrates staff and patients alike, and doesn’t work well with other NHS systems. This must change.”
The move from the mega-vendors in this space to try to create systems that span acute, community and primary care will not alter this paradigm and we need to take care as a joined up health and social care system to not start to drink the cool-aid again. EPIC now ‘offering’ a CHR is not the solution to a GP market place that has shrunk in size and is currently slow to consider how interoperability can be achieved outside the walls of their own systems.
In the same week that the Secretary of State made these comments Sarah Wilkinson the Chief Executive Officer added,
“The next generation of IT services for primary care must give more patients easy access to all key aspects of their medical record and provide the highest quality technology for use by GPs. The suppliers must also comply with our technology standards to ensure that we can integrate patient records across primary care, secondary care and social care.”
The simple fact that our national body for digital followed up the Secretary of State’s comment with this is a good sign, an ask for vendors to integrate across the care setting that make up the NHS against an agreed and publicised set of standards is what NHS IT teams have been asking for since the demise of NPfIT. Enabling patient ‘easy access’ cannot be done at a national level, that has been proven when the centre’s attempt at Health Space and Microsoft’s cancelled Health Vault solution. What can be done though are elements of patient access; security layers, a unified front end and entry point, promotion of the solution, standardised sets of data and ways in which this is presented and access to national data sets and information; but access to local information is best managed at a local level!
The work done in Southampton and now in Leeds and now many other places is showing that elements of an open Person Held Record (openPHR) can be achieved with connectivity, standards and a reliance on the expected parts that are best done once nationally.
The EPIC Systems CEO Judy Faulkner told a meeting ahead of EPIC leaders just ahead of Christmas that
“If you want to keep patients well and you want to get paid, you’re going to have to have a comprehensive health record. You’ll need to use software as your central nervous system, and that’s how you standardise and manage your organisation.”
These words echo some of the content of the new direction published by the Secretary of State and his team.
As a digital leader I have always pushed back though on the statement that IT will help standardise the organisation. That needs to be a clinical pull for standard work not a technology led necessity. In Ireland in late 2014 the Department of Health pinned parts of the Electronic Health Record Case for Change on the standardisation that could be achieved through the implementation of technology. The CCIO community in Ireland understood what was meant here but still pushed back, they had built the understanding that clinical led change was the right way forward and insisted that change would come about only through collaboration and with digital as a foundation for standardisation. This is why it took two years from procurement of the Cerner Millennium system to go live in the first maternity hospital of the EHR system, the clinical team wanted to ensure that the standard work that the system helped them deliver was based on clinical best practice not how the software works.
Judy Faulkner told Healthcare IT News in December 2018,
“Because healthcare is now focusing on keeping people well rather than reacting to illness, we are focusing on factors outside the traditional walls.”
This makes sense, the delivery of Population Health is the new knowledge basis for what we as healthcare professionals (Note not digital leaders) need to focus upon, here in Leeds we need to deliver this as a city, as a citizen platform for good health and social care to exist. We need to protect our clinical, medical and healthcare professionals from a deluge of data and somehow find the right way to present the right data at the right time, not all the data some of the time. A move to ‘data is there for the asking, not the taking’ is what Ewan Davies chief executive of Inidus called out in his new year predictions recently, with permission and with the right tools the CEO of EPIC could be right, digital systems really could start to offer the delivery of healthcare the ability to consider how it can deliver healthcare ‘outside the traditional walls.
To kick off 2019 Simon Eccles, national CCIO for Health and Care revealed his predictions for 2019 to Digital Health;
“I believe we’ll see a renewed vigour in digital health technology and I hope an end to the acceptance of ‘not-good-enough’ tech in the NHS, with NHS Boards across the country taking action to support their staff with good technology. 2019 will see the launch of the first NHS Interoperability Standards, with clear timescales for their adoption, and we’ll see the NHS App being taken up which will start to show us the true potential of the empowered consumer in health.”
However Ewan Davis the chief executive of Inidus had a less positive slant to add on the direction needed in his predictions for 2019;
“Progress with interoperability will slow as vested interests and the sheer difficulty of making it work swamp efforts to get beyond the first few use cases and there will be growing recognition that we need a different approach to create the data fluidly we need.”
I believe the way to abort this gloomy direction will be moving to a learning from local approach, one where we come together as healthcare leaders and share what has been delivered and how, the Care Connect work in Bristol, GP Connect work in Leeds, Record Locator go live in various locations and an ask from One London to truly move forward with meaningful FIHR (Fast Healthcare Interoperability Resources) profiles all begin to truly ring a bell for interoperability to happen in earnest. Whether its new entrants into the GP market that deliver this or a renewed local relationship with the suppliers that exist now to my mind it doesn’t matter. What I do know though is that by working together the system can remove the frustration that our Secretary of State describes and offer a joined-up system that has digital at its foundation and data fluidity as its life force.
I am proud of being a digital leader but I think that in 2019, to truly deliver what EPIC have described as a CHR then we all need to become healthcare workers with digital expertise in the same way as a brain surgeon is a healthcare worker with surgical (and so much more) expertise!
I love technology and how it has transformed the way we live today; so sitting in a Matt Haig event last week in sunny Leeds I began to feel like an interloper, an enemy of the ‘people’, like at any moment I would be found out and the audience would rise up against me and swing me from ‘the wall’ very much Handmaid’s Tale-esque.
Matt’s opening comments were very much about the speed of life today and the impact it has on us all. There is no denying what the speed that not just digital brings but the speed of change more generally. We now witness fast paced change in the political scene, the way in which social media impacts upon us all, even the instant gratification of things like Uber, Amazon Prime and Deliveroo, the effect these have on our lives is unrealised day to day.
We spend very little time simply waiting for something without distraction. A friend, an avid Twitter poster, recently commented that he was on the family summer holiday and camping. There were queues everywhere and little mobile signal, so people were actually talking to each other, although the irony wasn’t lost on others, that he was still posting this on Twitter!
Mental health (or rather a lack of it) is the biggest killer of men under 50 years of age! We call the collective for illnesses in this pandemic ‘health’ even though this is a misnomer that we hide behind. People die through a lack of understanding, a lack of support, a lack of diagnosis; they don’t die because they have ‘mental health’, that’s what we need to strive for, we want people to be mentally healthy!
No one would think you should only get treatment for a physical illness if you’re on the point of death
The political mighty have taken it upon themselves to remove sugary drinks from most of the market place to attempt to remove the obesity issue threatening the kids of today. Yet what has the same intelligencer done about the support for the mental health of the same children? Very little yet! Anti-depressants are the fastest growing prescription drug in boys aged 11 to 14 in 2018, this figure floored me!
The pressure on the young of today outweighs anything anyone my age would have ever felt. Matt pointed out in his talk that when we were kids the need to fit in, the need to hide from the bully or even the annoying friendly chap, ceased to be there at four o’clock because we could go home and close our bedroom doors with only our parents and siblings to handle. Now the school and the peer groups’, friendly and unfriendly, follow children home. Social media brings us ever closer, so close that time away, time alone, is becoming the most treasured position. That unique opportunity we chased used to be connectivity and sharing, now it’s time unplugged and chance to breathe without so much connectivity a chance to just be.
When you interact with the next generation now how does it make you feel? What is the generation gap when it comes to mental health I wonder? A member of Matt’s audience asked about the definition and difference between nervousness and anxiety. He quickly compared the difference being the equivalent to hungry and starvation! For me nearing 45 years old, I thought that was quite an amazing way of considering the difference in how the younger generation will define the impacts on mental health – worlds apart. How many people under the age of 30 will exclaim that they are stressed, and how often will the ‘elderly statesman’ retort that they have nothing to be stressed about.
The way we consider mental health of people in the UK needs a fresh pair of eyes. We need to get to impacts and causes somehow.
My boss in Ireland used to talk eloquently about the health care system being a system of the sick not a health care system because it doesn’t do (isn’t able to do) prevention. The ‘shift left’ change to health care much talked up all over Europe now needs to be applied to the mental health of the people of the UK more than ever before. Matt gave a great example of Fiji in the mid-1990s, when they started to air US TV shows, ahead of doing this there were no eating disorders in Fiji. Anxiety was almost unheard of, but within five years, eating disorders grew to the ‘norms’ of the US and anxiety was at one point described as a pandemic. There are no official studies linking the two events, and as I have said already the world is changing at a high speed, but, it does make you pause for thought.
But there has to be hope, doesn’t there? When do we become aware of what makes us better? When do we apply that to the next generation of young people, harmed by the pressure the system applies to them to such a degree that society becomes malformed and somehow changes in how it treats the disease are never quite impactful. We have now accepted the term mental health as a phrase that is ok to use as an everyday description for a reason for school exclusion.
Matt asked the audience to ‘hear their own advice’, ‘it’s ok to be well one bit at a time’, ‘you can be a bit better’. We need a new acceptance, it’s ok to be at work with a cold, just don’t give it to me, and therefore it needs to be ok and supported to be at work or involved in activities with some mental health issues. How do we accept, understand and support mental health illness in the work place, in the school system, in the street in the same way as the common cold I wonder?
We have to do something, the speed of life isn’t going to slow down, I don’t want the speed of digital innovation to slow, which means it will continue to have an impact on our lives. I took another great little anecdote from Matt: digital and social is like ice cream! We can have a bit of what we love, and I love dearly chocolate and vanilla in the same bowl, but staying in bed on Saturday morning for four hours with a bath of chocolate and vanilla would not do any of us any good, the same goes for digital and social media I guess.
If we move our world forward just five years we need to be able to give ourselves some assurance that the digital world we create does good without causing harm. In my professional area we talk of patient centred design and portable data owned by the citizen but we also need to consider inclusivity and the bias associated to what digital brings. I am still excited for the future, our awareness is improving and I hope that this means we can get it right, evolve in a direction that is safe but also considerate of the wider impacts. Just maybe digital can be part of the cure not the problem.
With great loss comes a new degree of responsibility, the world of science has lost not just a great thinker but probably the biggest inspiration of the last century. The loss of Stephen Hawking at 76 years old is a sad day for anyone who has been inspired by his writing, his speaking even his presence, to think differently, to consider something beyond the normal and then to try to persuade others that the idea you have could become a new normal.
In 1970 his work on Black Holes moved us closer to understanding not just the science of how we are here but placed our minds in a position to understand the why. By 1974 he created a unified theory that combined general relativity with quantum mechanics, the next phase in computing, the Quantum Computer would not have been possible without this work. Satya Nadella wrote in his recent book that the best way to describe Quantum Computing and its impact would be to take a description of the Twilight Zone and apply it to a new world;
You’re traveling through an other dimension, a dimension not only of sight and sound but of mind. A journey into a wondrous land whose boundaries are that of imagination. That’s the signpost up ahead – your next stop…
The Twilight Zone by Rod Serling
Perhaps that is what professor Hawking really wanted us to do, travel with our minds to a new dimension.
By 1979 he had outlived his doctors predicted life expectancy by a decade. He was never going to give up challenging clinicians throughout the world by his sheer act of will to continue to exist. He outlived the clinical prediction of his existence by 47 years, he himself described those years as borrowed time he had to pay back.
In 1985 he found a new voice, one that he never wanted to loose despite changes in technology, one that became a trademark for a new intelligence. By 1988 A Brief History of Time was published, a real science book that would remain a best seller for four consecutive years and in 2018 will probably make many peoples hot lists of the year again. A Brief History of Time popularised science, physics and the art of describing complexity in simple terms to people who at school would not have ever been an achiever in science, me included.
If we find the answer to (why we and the universe exist), it would be the ultimate triumph of human reason – for then we would know the mind of God.
A quote straight from the best seller to me revealed the continuing battle inside Hawking to truly reach everyone and help them understand the meaning of life, above and beyond the Life of Brian definition.
1999 arrived and a pop culture icon was born; one of the worlds favourite ‘real’ characters on the Simpsons, his own TV series, a guest appearance on Star Trek the Next Generation and even a voice over on Pink Floyd’s album Division Bell, perhaps a higher accolade than D:Ream!
In 2004 his thinking on Black Holes continued however he proved that even the greatest can change their mind when he proclaimed loudly that he had altered his findings on what happens to information that ends up in a Black Hole, the theory that it flows to other universes was born, the dreams of every Sci-Fi geek came true.
Most recently Hawking asked the whole human race to take care when investing in theory around Artificial Intelligence, investing in a black box of uncontrolled knowledge needs to be done with some moralistic compass and control.
For me though Stephen Hawking was more than the sum of these parts, his voice, his uniqueness and the way he engaged generation after generation in what the world could be through science, through change and innovation is what his legacy will be
So remember to look up at the stars and not down at your feet. Try to make sense of what you see and hold on to that childlike wonder about what makes the universe exist.
RIP Professor Hawking, you rock!
Last night was a great night out in ‘sunny’ London, for me a return to the Jazz Café in Camden, a place I used to love, a place I frequented many times. But, the last time I was there was for the final goodbye gig of a band I loved, Ben and Jason around 2003.
So much changed after that gig, I moved jobs, houses, and relationships changed, and then a devastating thing happened, the person I shared Ben and Jason with, the person who taught me so much became irrevocably depressed, I am ashamed to say I do not know why but stepping into the Jazz Café last night brought back some amazing ghosts of an amazing man. Music can do that to people can’t it!
The gig last night was a live remix by a collective called Blue Labs Beats, they took Guru’s seminal Jazzmatazz volume one and reimagined it live on stage; and then the song Sights In The City came on with the lyrics;
Sights in the city got people cryin.. Sights in the city got people dyin..
It was a long time since my friend had popped into my head but this week there seems to have been a lot of commentary on men who commit suicide, maybe that is why when this Jazzmatazz classic song came on I could almost see him stood there, taking photos, enjoying being at a moment for us that we were sure we would never forget, and yet no matter how good the moment, we did forget it.
A statistic for you, the biggest killer of men under the age of 45 in the UK is suicide. Here’s another fact 6,000 lives were lost in Britain due to suicide in 2016 and three quarters of those deaths were men!
Why does the black dog, that horrible black cloud land on a man’s back with such intensity, and why oh why do we not deal with the assistance that is needed in a proper, human way? A man feels blue and too often the phrases of anti-masculinity are rolled out; “Don’t be a big girl’s blouse”, “Boys don’t cry”, “Man up” all are common pieces of advice to a man who opens up and says I need help.
I have yet to read any evidence that explains why men are hit by depression harder than women, I am not even sure they are, I think what actually happens is a woman knows how to seek help, a man is conditioned to handle it on their own. In fact, the Mental Health Foundation claim that in England, women are “more likely than men” to be affected by the most common mental health issues. And yet men take depression to the further place so much more frequently than women. This highlights the issue that suicide is such a pressing consequence for us to understand and find a new way to assist every man who reaches out.
This week I commented on social media that lad culture has gone; it’s a decade since Loaded magazine meant something, even FHM is no longer here, and yet we seem unable to move away from how we treat emotions as men. A drunk friend who needs helps warrants a joke that he is just being a lad. Why do we think this is funny still!
I want to be part of a change, I want to be clear that it is ok to be a man with emotions, and if a man, a friend, an acquaintance, a colleague needs help then we have to learn how to be there in the right way for that person.
Back to the memories, going to Jazz Café last night enabled a ghost or two to be put to rest, but it woke up in me a real desire to see what I can do to help, I don’t want the language we use to be a part of the problem anymore.
Since that final Ben and Jason gig the world has changed, and yet being there last night it struck me that so many things haven’t changed. I want to know that if a friend were to come to me with an emotional issue that I would react better now, in a way that would help, in a way that is informed in a way that did not need to consider the gender of the person seeking help.
Ben and Jason’s Everybody Hold Hands With Everybody Else sums up where I wish we could get to;
Dying man, aching hands, fallen to the floor, drowning man, hold his hand, pull him to the shore, back in your hair again, always my heroine, it’s getting harder to bear, you’re not a friend to me, if you come down to me, I’ll never take all your air.
NB – This blog has been written quickly, apology’s for any grammar or spelling mistakes in there, I will get back and fix these later.