Being part of the CIO100 has meant something to me every year that I have taken part, this year I didn’t make the event itself and it looks like it was a roaring success from the photos on social media and the WhatsApp commentary from so many of the CIOs that were there.
Being able to be part of a community of leaders every year that support each other, laughs at each other, finds ways to promote each other, shares stories and battle wounds with each other has been a great way to create a collegiate environment regardless of business area that the CIO works within. I think the key take away from the CIO100 celebration year on year is the similarities that the role brings ‘regardless’ of the business area that the CIO works within.
Its fascinating moving to a new organisation as a digital leader, no longer a CIO, but a member of the team with an interest and a remit in the key items of the CIO agenda I can see now how transferable the experiences of a CIO can be.
I remember reflecting on similar when I moved to Ireland, the way we described the issues faced by us every day delivering digital to healthcare in the UK were so similar to those described in Ireland and yet both sides of the Irish sea thought they were unique.
One piece of advice, if I am qualified to give advice, to all CIOs and aspiring CIOs, get out of the business bubble you may find yourself in, use events and groups like the CIO100 to learn about the challenges of other areas embarking on digital transformation and innovation in a business area. If you have an issue today, I will bet that either it has been solved at least once in a community like the 100 already or at the very least someone else in that group is going through the same issue.
The CIO100 is perhaps the greatest support group that a digital leader in the UK can be part of, a group I am proud to call ‘home’.
Well done to everyone in the list, looking forward to a year of connections, collaborations and having some fun.
… and perosnally from me, whilst I am no longer at Leeds teaching Hospitals Trust without the amazing team there my place would never be so in the CIO100, a huge thanks to all of the team for working with me for 12 months on the crazy journey we called #LeedsDigitalWay.
Super heroes each and everyone of you!
The Long View is a Radio Four programme hosted by Jonathan Freedland where he uses stories from the past to increase understanding of current affairs and events. At Rewired tomorrow (25th of March) we are reusing some of the format, bringing heroes of past digital healthcare to the stage to shed a light on the lessons we can learn from the past and ensure we stop making the same mistakes time and time again. Why do we study history? I remember a teacher once saying to me, of course the answer was to do things better in the future!
Are we looking at heroes of digital as an example of the changes in the digital market place for health care today? If we are maybe it’s not an Alan Turing type hero we need (full genius style) but in-fact a mind more akin to Professor Richard Feynman, his famous four productivity strategies included;
The Feynman way of working may be the best approach for leadership in the digital health and care arena that we could adopt.
“The only way to deep happiness is to do something you love to the best of your ability.”
And the heroes of digital health that take to the stage with me tomorrow are the embodiment of that quote. Professor Gwyn Thomas, Andy Williams and Beverley Bryant all overachieved (and continue to be huge parts of) the grand digital healthcare plan. They also applied the Feynman further principles of trusting in knowledge through teaching and taking others on a journey with them and trusting in people as friends and colleagues, not as competitors and antagonists.
Trying to shape the face of the next hero of digital health care is a challenge. We could try to use the Hasbro game Guess Who to create the ‘picture’ of the new hero we all need to step up to the front. Does it feel like the change is just about to come over the hill though with NHS X and a minister and team that seem to ‘get it’ so maybe we don’t need a Guess Who, more a guess how!
Although a hill that today has hidden Brexit shaped traps that could scupper all of our ideas and plans. We need that Long View vision of the future enabled by the lessons of the past to truly give us the blueprint we strive for. When we came up with the game we had a long list of the digital heroes of the past that we wanted on stage, Richard Grainger, Katie Davies, Nigel Bell, Gordon Hextall and Tim Kelsey all made that long list, but hero is a strong word and not everyone could agree to be on stage described as a hero.
“… but we’ve always done it like that!”
In Ireland, as Chief Information Officer I pushed hard for the removal of the culture of not trying something new. I even asked that the council of Chief Clinical Information Officers adopt the famous quote from US Navy Rear Admiral Grace Murray Hopper’s as their vision statement in year one,
“The most dangerous phrase in the English language; we’ve always done it that way!” became a way of trying every day to change the paradigm, a way of simply pushing harder to do something differently, sometimes simply because it is different it worked.
Looking to the past does not mean do it like that again, it means consider what happened, learn what needed to be done to get it right and avoid the mistakes that were made. We are rightly so concentrating on blueprinting the success at the moment, we do need to be careful not create one size will automatically fit all environment. My heroes of the past in digital and business didn’t simply take the blueprint and press copy, they tried hard to reapply with the lessons they learnt and make sure others could see how to apply and learn next.
My heroes from my reality today include; Tony O’Brien for his calm considered leadership. Jonathan Sheffield for his vision and steadfast refusal to take second best. Russ Branzell for demonstrating compassion as a leadership trait in the face of global influence. Kevin Holland for showing that expertise is a leadership trait best served shared. Gwyn Thomas for delivering the most inclusive organisational change a person could experience. Carrie Armitage for ensuring that the team around the leader is the most important. Phil Randles for never guarding his knowledge. Rachel Dunscombe for being all of our Messi. Andy Kinnear for leading us from the dark ages to the light. Molly Gilmartin for bringing an approach to innovation that others are just too frightened of. Gary Venchuk for teaching me when to swear appropriately. Ted Rubin for inspiring magical thinking on reputational importance. Amy Freeman for taking knowledge and constantly learning more with a goal of doing better. Sarah Moorhead for caring so much about the next person in the queue and frantically finding a way to take them with her. Dan and Chip Heath for delivering the most amazing stories and Frank Buyendijk for being my own stage presence inspiration.
Then I consider the Leeds team I am part of now and know as I look around we have a group of people that embody the long view in everything they do, a Chief Executive, an Exec, a Chair a team of digital professionals like none I have been able to work with before supporting a clinical team who learn lessons and apply them every day and can and will deliver with the patient at the centre of every moment of the day.
Heroes from a different reality and how the impact on our style is interesting as we head to London for two days of being Rewired. Seeing old faces is always a new inspiration and that’s whether we are laughing together in a social environment or listening intently to the latest story Rewired will bring us together for the first time in 2019 as a group of professionals who know how to do this, we just need to collectively move the blockers out of the way. The nations CCIO Dr Simon Eccles will undoubtedly remind us why we need to do this and why we need to do it in a better way, no jam for tomorrow but the reality of today.
Heroes of tomorrow, aspirational people who we know we can follow, stand up at Rewired and be counted because inspiring the next generation should be all of our most important job!
We could be heroes, just for one day, (or maybe at least the two days of Rewired)!
What is one of the most wicked problems in large organisations seriously adopting digital today? Many digital leaders would say it’s the challenge that Grey IT brings, and then some board members would turn to them and say what is Grey IT?
Digital functions the world over have adopted a multitude of phrases to describe a core issue that manifests in many ways and for many reasons. Grey IT is ultimately the organisation voting with its feet (or its projects) and buying and implementing technology without going through any digital function or digital governance. It’s a problem with its genesis in technology teams not meeting customer demands and the consumerisation of technology. There is an element of being careful what you wish for. In the 1990s technology leaders bemoaned their business functions for not being engaged in digital transformation, often the National Programme for IT and its perceived ‘failure’ within the NHS is accredited to the lack of business engagement; and now here we are a decade later complaining that the business is so engaged in digital solutions that they can deliver this stuff without digital teams getting involved.
The management training catch phrase of the 1980s, “Don’t bring my problems bring me solutions” needs to be turned on its head, when the business has an issue the ask now needs to be; “Come to me with your problem and lets together come to a solution for it.” This will be a first step to avoiding the Grey IT issue getting any worse, but once instigated the digital function now needs to be able to react to all the issues that are brought to the door, quickly, and in an agile manner that truly delivers on defined customer needs.
I propose that Grey IT is often so rife in large public-sector organisations because of two key reasons; a capacity to keep up with the now consumerised technology delivery that is possible and an often-backward view of innovation that comes from the business by digital professionals. The expectation that digital innovation can only come from those within technology rather than those at the cutting edge of business delivery has to be reconsidered by us, the digital leadership of any organisation! Sometimes the customer does truly know best!
We must combat these two root causes of this if we are to remove the negative outcomes of Grey IT’s existence. Technology outside of a decent governance capability is ultimately dangerous for business and healthcare delivery in particular. Grey IT does just that, delivers a layer of technology that does not have any governance to it. The real manifestation of Grey IT in the NHS today is often seen 12 months after the initial project go live, when the bill for the second year of the licence arrives or the need to upgrade becomes obvious and the technology professionals are called to assist. Worse still Grey IT becomes clear the day the system built, supported, procured and run outside of IT doesn’t work anymore, suddenly Grey IT falls back to its base colours, black and white, whose problem is it and who is going to fix it!
My organisation has been on the receiving end of one of the worst outcomes of Grey IT, many years ago we suffered a significant outage in the digital systems that were used in the Pathology Lab. Whilst the solution had been bought through a governed and appropriate manner it had not been taken into the technology team within the trust it had been developed, evolved and supported by keen and enthusiastic users, but a workforce that had moved on, had a higher priority (patient care) or simply had forgotten how to do stuff was left supporting a solution that was on legacy infrastructure. So when a server went pop, a disc array went AWOL and a back-up was missing disaster struck. This is all stuff the good book ITIL teaches digital professionals to avoid, but once the grey mist has descended upon it even the good book couldn’t help! All that the technology team could do in this case was take control of the recovery and work hard to ensure that the right lessons had been learnt and applied to the future.
I think we are looking at a plethora of different types of Grey IT that all need a different solution; Feral IT, Guerrilla IT, Shadow IT and traditional Grey IT.
Feral IT for me starts as a digitally led project often a collaboration, an exciting chance for the digital team and the ‘business’ to work together to come up with a solution. It gains ground as it delivers benefit but slowly drifts away from good governance, often because the project is so successful. Over time though the project will grow and its delivery focus and the team will change, as that happens the digital governance of the organisation can break down and the project is then being delivered outside the parameters of good governance.
The key to making Feral IT work is to ensure that the governance of the project is grounded in the foundations of the digital agenda, organisations are often looking for agility and a start-up culture to enable innovation to happen, but innovation becomes scalable only when a rigour of governance is applied. As digital leaders we should try to encourage the agility that this type of project culture offers, but it is also our role to ensure that the foundations of decision making and corporate risk management are clearly understood. It is tricky in a new decade where digital is a consumerised product, building an understanding of why we the digital function of an organisation needs to be continually part of the decision making in this kind of project can only be achieved with the right style of engagement, one that at least can light a candle next to the consumer style digital capability now available to everyone.
Guerrilla IT is a phrase that best describes the technology project that has been actively hidden from an organisations digital team, a project that has wilfully been created outside of governance for so many possible reasons. Guerrilla warfare was a phrase first coined in 1808 to describe the Spanish resistance to Napoleon, Guerrilla IT is an identified need that a team has understood and has been unable to get help with the delivery of, at this point the business function decides to go ‘rogue’ and deliver it anyway.
In the NHS today Guerrilla IT exists for many reasons but I would suggest the key reason is an inability to make the national solutions that have been delivered work in the way that locality needs them to. When we have Guerrilla IT projects we need to understand why they exist, much of the reason will often be traceable back to the nature of the solution being sought by the business to the problem and the digital functions inability to react in a way that achieves the desired outcome. The use of WhatsApp in the NHS is possibly the best example of a Guerrilla IT project, organisations have been saying for more than five years that this platform should not really be used inside a healthcare environment, and yet every day that I am in Leeds I see and hear of staff using it in ways we have actively said it shouldn’t be used. Why, because it achieves a need, it is easy to use and it’s a consumer product, and in reality, alternatives to its use are very new to the digital fabric of healthcare. The same could be said for ERS, there is a desperate need fro the NHS wide booking system to offer a ‘many to many’ booking capability, hospitals refer to hospitals! And yet it doesn’t and therefore department after department has its own growing digital solution to enable the digital transfer of information about patients moving from hospital to hospital, we have to fix this!
Shadow IT manifests often from the digital team, when disagreement exists in strategic direction, standards to be adopted or simply in the procurement of a system. Digital professionals can be a real pain, we all know best, we all know our subject matter and sometimes this can boil over into a Shadow IT project. A project that is delivered against the wishes of the governed decision and with an intention to compete with a decision made. Shadow IT will often be kicked off with good intentions; a project just in case the agreed and governed solution misses a deadline or as a risk mitigation to functionality delivery, but sometimes the project is started because it is a ‘pet project’ of a leader of the organisation, digital or otherwise. Shadow IT can be a useful mitigation to risk, but needs the same level of governance, risk management and rigour applied, it needs to be managed as a project that has goal of being there just in case and should not be tolerated as a vanity project because someone with the digital function is unhappy with a technology decision that has been taken.
Grey IT becomes the collective term for these issues, all shades of grey, successful in some ways in delivering user defined need but with risks to the business that need to be quantified and mitigated against. Removing Grey IT has already become one of the wicked problems, maybe we should accept that we can’t remove Grey IT from what we do, but we should look to understand where it is, why it is and what the risks are to us. There is also an element now of learning from the collective Grey IT projects and understanding better how to avoid them starting up, and that I think is about understanding the investment decisions that are required to initiate a digital project and the engagement needed to enlighten everyone in decisions being taken.
Investment and the return it brings has to be part of the equation in the answer to the ever-present Grey IT problem. Investment in infrastructure for healthcare needs to have a digital element in the same way as the investment decision would call for electricity, heating and light. In 2015 KPMG Ireland called out the need for the fourth ‘utility’ for the building of the National Children’s hospital in Dublin to be digital, it wasn’t, and we now see a furore in the media as the whole digital backbone of a brand new hospital is going over budget because its digital element was expected by decision makers to be run as a Grey IT project. Misunderstanding or on purpose I am still not sure but I do know that the digital team across the project, the ‘centre’ and the department were clear that the hospital had to be a digital hospital and yet the return on that investment was not judged to be worthwhile capturing properly and openly, IT costs money, when will we learn!
We are asked to consider the Return on Investment (ROI) that digital makes when we build a case for spend, perhaps the key to removing the plight that is Grey IT from digital health care could be to start to consider a different set of terms more strongly, what if we considered the Value on Investment (VOI) instead? Let’s not pretend anymore that investment in digital in healthcare anywhere in the world will ever return money back to anyone’s budget, capacity and demand are so ‘topsey turvey’ right now that no amount of digital innovation will return investment, what it will do though is increase efficiency to bring us closer to the demand need, increase quality to bring us closer to the required need and bring a new interest back to the daily roles to deliver a new enthusiasm for what we do. If we all consider the VOI together then just maybe no one would want to set up their own little Grey IT project anymore because we would all be heading towards the same increased value curve.
So we move from ROI to VOI and start to build the case for change in a different way, we still are missing a piece of the colourful puzzle that will be laid over the top of Grey IT though. Return on Reputation (ROR) was a phrase I first heard uttered by Ted Rubin a digital marketing expert and social media evangelist, Ted suggests that the way to building reputation is by building the network of believers and doing this by being ‘nice’. Quite an American ‘thing’ to want to do I guess but there is something in this I think. Digital functions all over the NHS have not adopted any form of ‘Del Monte’ attitude, we are quick to say no, we are quick to say get in line we have a prioritisation process you know! When we do this without listening, we do two things, we set the preference for our customers to understand that its quicker to ‘go elsewhere’ and that we are not part of the team, we are ‘another’ corporate function, maybe even an overhead, with our own benefit blocking agenda. If we adopt Ted’s principles then we should be more open to listen, more transparent in what we will do once we have listened and allow the ‘business’ to work with us to decide what to do first, second and third. The return we would all then get from this is an improvement in the reputation we have.
Grey IT is here now and no matter how big your One IT (insert other corporate programme name here!) is that you are instigating to remove it you won’t without attitude and aptitude change in the digital functions of healthcare. Change is hard to make happen but we have to make it happen, as a journey we are on not as a demand dictated to the system we can become one transformation function for the NHS.
Bring out the problems, let’s work together to create new ideas to solve them and then lets seek the right way of describing the investment and the way we are all going to deliver this together, let’s create joint solutions to problems we consider to be joint as well.
Somehow let’s make digital first be a way of working together that is about innovating for the future not simply concentrating on tomorrow.
NB If you ever see Ted Rubin on an agenda at an event you are at, go and see him speak, one of the most inspiring speakers I have ever had the joy of seeing, he changed my outlook and I still quote him years later, ‘just be nice!’
First published as a KLAS blog after Leeds teaching Hospitals NHS Trust received the analysis of the Arch Collaborative. If anyone wants access to the full Arch Collaborative results from Leeds then feel free to get in touch, happy to share.
The Arch Collaborative exists to ensure that we understand what the users of our systems really think of them!
The technology industry is one of only two industries that describe their customers as users. Launching the Arch Collaborative locally ensures that each healthcare system that takes part can move further and further away from that ill-gotten term, user to a new paradigm where we have valued customers with opinions that matter, perceptions we should act upon, and innovations that we would be foolish not to consider.
The first time that my organisation, NHS Leeds Teaching Hospitals Trust (LTHT), considered the Arch Collaborative was in early 2018. We regularly share ideas and concepts with two NHS Trusts: The University Hospital Southampton and the Salford Royal Foundation. Those Trusts had taken part in the survey and were clear that it was a great way to really understand the clinical views of the Electronic Health Record (EHR) and the way it is implemented.
My organisation has risen to the EHR challenge in a different way than many. 15 years ago, our organisation decided to begin building its own EHR. We released new functionality in subsequent years until it became clear in 2017 that the organization had evolved the solution to the point where it was a clinically developed EHR.
Taking on the Arch Collaborative survey felt like the next step in understanding the direction we should head. It could be the basis for a strategic road map.
Standing up on such a public stage was a big decision for an organisation that has invested so personally in the creation of an EHR. For us, this wouldn’t be a comment on the vendor implementation or the partner development of the training materials; this would be a comment on what we had built, what we had prioritised and what we had invested our time in.
There were no gimmicks, backing tracks, or staged production; the Arch Collaborative just asked for an evaluation of our raw digital ability.
By the time we agreed to get involved in the Arch Collaborative, there had been a number of departmental changes in our organisation. We brought together individual teams and elements in the hope that we could form a super group.
We were so nervous about what would happen next that a colleague compared this process to an audition for the a cappella singing team at university, but we were resolute to know how our voice fit into the digital health mix.
The Arch Collaborative involves getting the broadest clinical input possible to a series of questions about the functionality and implementation of the EHR solution within the organisation. The survey is quite in-depth and requires time and energy to work through. We asked one of our Chief Clinical Information Officers (CCIO) to take on the project. The CCIO worked with our digital engagement team to ensure that the survey terminology was anglicized and then to widely promote the survey. In the first week, over 400 members of the hospital team had completed the survey; by the time we closed the survey, over 980 members of the workforce had completed it.
We were so proud that so many clinicians had come to our gig. We were not playing to an empty stadium—they had come to join in and sing about the EHR they used every day.
Our organisation uses the EHR for point-of-care delivery; over 19,000 unique users accessed the system in September of 2018. In the same month, there were over 74 million interactions with the system. An average nurse is now collecting over 100,000 data items a year!
When we consider the size of the audience that the Arch Collaborative response will reach, the throughput of the system feels huge. That comparison to the a cappella sing-off is more like the national sing-offs at the Kennedy Centre in the film Pitch Perfect.
When organisations and senior staff members look at the success of EHR implementations in the NHS, it is easy to focus on the traditional project management triumvirate of cost, time, and quality. That is understandable—these are important aspects of a large-scale procurement project.
But a lesson hard learned and seemingly relearned many times over in digital healthcare is that an EHR project is not just a procurement project. The Arch Collaborative was the perfect way for us to test the pitch and tone of our EHR.
We believe we have an approach worthy of blueprinting for reuse but not a specific system, although that is possible. We are more keen to consider the approach we have taken—an approach that includes the following: open standards; the concept of the geography as a platform for care rather than separate healthcare systems trying to interact and integrate; and the clinical focus we have placed in the prioritization of developments.
Each of these methods has been a major part of how we developed the #LeedsDigitalWay, and we believe it is worthy of blueprinting and digital implementation in healthcare across the world.
Ultimately the Arch Collaborative at LTHT would be a comment on the concept of the #LeedsDigitalWay as much as it would be about the actual EHR.
In discussions with KLAS about the decision to take part in the Arch Collaborative, they stressed that our taking part showed humility, a strong word that meant a great deal to us. Around the same time, a tweet from Damian Hughes (@LiquidThinker) resonated particularly with our reaction to the Arch Collaborative results:
Ego is often a roadblock to your development. Humility is a key to a new pathway.
Taking the ego out of delivery means that we can adapt and learn more quickly and ensure that the silos that so easily spring up between clinicians and digital leaders can be avoided.
The results from the Arch Collaborative are not for the faint of heart. They deliver a complex, true, and statistically sound message that will shine a very powerful light on the weaknesses of the work that you have done and specifically highlight the areas that you can change to improve your “Net EMR Experience score” with minimal effort. Unlike a HIMSS score, the Arch Collaborative is based not on what is in the “box” but how the box is used and the success of its functionality.
The headline score for Leeds Teaching Hospitals Trust was a 41% Net EMR Experience score. This is the macro score that sits front and centre on the report. The score ranges from -100% to +100% and is built up from the entire survey. We were pleased with our score.
60% of our staff members described themselves as “pleased with the experience” that the EHR offers, while 19% are frustrated daily. The detail of the Arch Collaborative report allows you to investigate how to improve each evaluated area as well as the headline figures.
By offering just four hours of training every year to every staff member that uses the EHR (that’s over 19,000 people, remember), we could improve our Net EMR Experience score by a further 10%.
That final statistic makes a digital leader in the NHS pause for thought; the cost-to-impact revenue on that 10% Net EMR Experience change is not insignificant, and the debate about where the cost sits would be a long one to resolve. Is it the digital team’s job to continue to deliver business changes? If the digital solution has been embedded in everyday life, should it be a cost of ownership?
35% of our team members that use the EHR daily would describe themselves as proficient in the use of the solution. That seemed immediately positive. However, 8% of our staff members indicated that they struggle every day.
The Arch Collaborative shines a light on what you need to do and the evolution that you need to inspire. Being on the receiving end of a complex statistical readout of your digital agenda enables you as a digital leader to take a breath, look around you, and consider how you move to the next stage.
Computer Weekly refers to the CIO role and its responsibility for the transformation of a system for driving business outcomes. It suggests that the CIO role is the “third leg of the stool” of modern “business” evolution, the other legs being marketing and sales. In healthcare, we are also in a modern evolution, made clear in the following quadruple aims:
The Arch Collaborative provides an opportunity to focus on the aims of the quadruple claims, but it doesn’t provide the means.
The Collaborative is grounded in the quadruple aims by accident rather than by design, but it does expose how necessary EHR capabilities needs to be implemented with the aims in mind. The Collaborative does not pass judgement on the EHR, though—it offers the statistical vision of how to improve.
If we consider the Virginia Mason Institute improvement method that was based on the Toyota Production System management methodology, we can understand how to innovate and improve using the Arch Collaborative as a baseline measure and the evolutionary plans as the rapid-improvement plans.
To ensure that what we deliver is received better, we need to find a way to offer 19,000 extremely busy people a way to not do what they do for four hours of the year! (I picked those words carefully.)
We can offer the opportunity to do the training and learning relatively easily. It is a great deal more challenging to find four spare hours for each professional who needs to use the EHR to devote to the digital agenda. It feels like a budget issue at first; who is going to pay for this? However, it soon becomes clear that it is an organisational culture issue.
The statistics from the Arch Collaborative allow you to dive into perceptions from different parts of the clinical team. The definitions need a little work to map with NHS language, but they work well at a rough-order view. For LTHT, the Collaborative highlighted a difference that we already knew, but the existence of the analysis reinforces where to focus. Clinical roles placed the LTHT EHR in different percentiles of approval, and they map as follows:
The results also include sophisticated symptom analysis to distil some key phrases for us to work with:
This kind of commentary was very powerful for LTHT for two key reasons: first, it wasn’t particular commentary on missing functionality—it concentrated on additional ways for system use; second, it refocused on the engagement piece as an area for improvement. We took these statements as suggestions for how we can do better.
The distance we have to travel on the journey of improvement is not to be underestimated. KLAS and the Arch Collaborative may have hit on something important. If the rest of the NHS spent the time to consider their suggestions, the wealth of comparison data that would become available could bring about the change in attitude and aptitude that digital healthcare needs so badly. Southampton has completed their Arch Collaborative research, too.
The CIO in Southampton, Adrian Byrne, commented, “I think it’s hard to come up with a set of measures to get a good evaluation report. We want to have some things we change and refine and some things we keep the same, so we can measure improvement. I like the Arch Collaborative’s ability to measure across peers. That is its main benefit. We can measure improvement ourselves, but it’s all arbitrary. KLAS has a great record in research and tends to provide real insight.”
That is the key. The Arch Collaborative today, in its full glory, enables LTHT to build its strategic direction for the continued evolution of the EHR. As more NHS organisations take part in the survey, more souls are bared, and more agreement is reached for sharing the report’s details, then we will build a platform that can inspire the next phase in the NHS digital revolution where the stars align. We will ensure that digital healthcare is about collaboration between CIOs and digital leaders who lean into the challenge together.
My last comment is from many years ago:
Forgetfulness is in the learners’ souls because they will not use their memories… they will be hearers of many things and will have learned nothing; they will appear to be omniscient and will generally know nothing; they will be tiresome company, having the show of wisdom without the reality.
Socrates (5th Century BC)
Let us prove the genius wrong. Let us learn from each other by remembering the past and noting the opportunities of the future with a humility that allows us to continuously learn and collaborate. As David Amerland says;
Collaboration is the new competition!
 The illegal drug trade has used the term since the 1960s and yet the technology industry has remained the only other business to maintain this reference.
 530 clinicians, 147 Advance practice clinicians, 153 nurses, 154 allied health professionals
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.
Originally edited and published by www.digitalhealth.net reproduced here ahead of the Digital & Informatics Team at Leeds away day in July. Partnerships applies just as much to the team as it does to the age old ‘vendor’ relationship.
What do you need from the perfect dance partner? Someone with the same ear for a rhythm as you, someone that doesn’t tower over you, someone with strength and grace in awkward situations, someone who can stand up to a change in beat, or someone who will help when you miss a beat. All descriptions that a healthcare CIO needs to apply to building the perfect relationship with their commercial digital partners.
As an analogy does the search for the perfect ‘strictly’ partner help when picking the digital delivery partner, lets us look and see by considering the different ‘dances’ we have on offer:
Argentine Tango; is characterized by its hold embrace and complex leg and foot movements. It is an improvisational social dance that is truly a dance of leading and following.
Represented by a digital delivery partner that follows your every move no matter how complex the delivery is that you are trying to achieve. This type of partner, in the new agile environment of what is asked of digital in healthcare, needs to be able to improvise within a plan and deliver at a high speed, in a structured and planned manner. The risk with this kind of partner is that you as the digital leader either have to be leading the ‘dance’ at all times or if the partner wants to lead in this style of delivery they will be driving your organisation to their beat which comes with risk as your organisational goals and the digital benefits you are striving to achieve will have to be closely aligned to your partners throughout the relationship.
Ballroom Dancing; is a form of partnered dance that has pre-defined steps following strict tempo music, such as waltz, quickstep and foxtrot.
If your digital partner fits to this analogy then you have created a very structured but perhaps rigid partnership. Both you and your delivery partner know what is needed of you every step of the way; you are working closely on delivering against contractual elements that are clearly defined and well understood or at least a delivery plan that you have both worked hard on to ensure has wins for both parties included. The area of concern here would be the ability to react and work off plan together may take time. Creating the next steps in the new ways of working will not always meet the needs of a modern business change project, whilst that could be described as a failing the original plan will be delivered. This is ok if it is all that you need and therefore working in this way will be perfect for you both.
Contemporary dance; is not a specific dance form, but is a collection of methods and techniques developed from modern and post-modern dance
This style of partnership requires a true relationship to have been developed, one where a high level of trust has been put in place, after all you are about to embark on a journey that some will think is a little odd. Few digital delivery partnerships have been able to achieve the level of trust to work in this way, however if it can be put in place it will bring a surprising amount of success for both parties, a relationship that can be reaction driven and therefore drive an agile response to problems can be achieved through working in this way. The level of sceptism from the ‘audience’ though will be high for the success of the partnership and it is likely the partnership will be under constant observation from a governance point of view to test its validity as an ‘art form’. Conversations about delivery of digital in a post-modern world have been raised over the last couple of years a number of times, this way of working with partners perhaps is the way to see this come to a place where we, as digital leaders, can truly understand how this would work and indeed even what it means.
Jive; is a social dance that can be practiced to a broad range of popular music, making it highly versatile, which adds to its appeal. It is easy to learn and has simple footwork, making it accessible for beginners, but it is tricky to master.
Jive as an analogy for delivery partnership is perhaps best used for those quick partnerships that are only in place for the term of a single delivery focus. The partnership is easy enough to learn and create and is driven by the tempo of the delivery. No lasting commitment needs to be made to the partnership if all that is required is a successful and sharp delivery, but if this is to be maintained longer term and the pace of delivery kept up then a strict set of performance metrics need to be put in place to ensure the pace can be maintained longer term by both partners. A jive relationship will be tiring for all partners, a new level of contractual sustenance will need to be created to enable the relationship not to ‘flag’ as it gets tired of the pace.
Salsa; is in 4/4 time in two bar phrases with a pause on the 4th and 8th beats, which gives a quick-quick-slow rhythm. In classes a choreographed sequence is generally taught, but in practice it is an improvised dance.
Salsa can be described as a sales driven digital relationship. The initial excitement of the contract being signed and the new relationship created will give those early deliverables a focus; a shared impetus to deliver almost jive like, however without collective improvisation as the relationship matures the speed of delivery will slow down. This can be beneficial in creating quick wins and then moving to a more considered and managed relationship as long as the slowdown in delivery does not hit a stop. Improvisation of the relationship in after sales behaviour can ensure that this relationship continues to evolve and is successful.
Tap Dance; is an example of a non-partnered dance that is generally choreographed, with one or more participating dancers.
Going solo to deliver but in tandem with others is perhaps the best way to utilise this as a learning example. Maybe the Local Health and Care Record Exemplars (LHCRE) are a good example of five tap dances being performed around the country. Each of the cohorts will now be trying to create their own tap dance, the original choreography being provided by NHS England and the beat and shoes provided by NHS Digital and others. Each LHCRE cohort will be able to have an element of choice in the type of shoe and outfit they decide to wear but when the dance is the performance the music and choreography will have to be the same for the System of Systems approach to deliver across the country.
We need to be awake to the style of partner we are choosing for the dance, we need to be able to live with different ‘dance styles’ as part of our eco-system of partnerships as the same style will not work for each project nor each partner we choose. True success will come when we have picked the right partner for each type of dance we need to deliver and we know how to move seamlessly from style to style.
Grab your partners by the toe, let’s go do the Dozy Do, or as the legend that is Sir Bruce would say, Keep Dancing!
In 2001 AI was ‘just’ a Steven Spielberg film; in May 2018 it is being described by many as a solution too so many ills within the NHS.
On the 21st of May the Prime Minister provided the NHS with her view on the way Artificial Intelligence could revolutionise the delivery of care for patients with Cancer, Dementia, Diabetes and Heart Disease and by 2030 save 50,000 lives. Grand claims and grand plans and a new direction for government. One that focuses on a digital art of the possible although certainly to leap from paper records in vast wire cages and trolleys as an “ok” solution through to AI as an opportunity for the delivery of care is no mean feat, but a goal we can try to play our part in.
The following day Satya Nadella the Chief Executive Officer of Microsoft gathered CEOs and CIOs from digital business from across the UK to discuss what the team at Microsoft described as “Transformative AI”. The CEO used a quote by Mark Wesiser the prominent scientist of Xerox and the father of the term ubiquitous computing to open his presentation,
The most profound technologies are those that disappear. They weave themselves into the fabric of everyday life until they are indistinguishable from it.
This is where we want our EHR to get to!
The conversation continued to try to deliver the fundamentals in AI. Data is what feeds and teaches AI, it provides the fuel to grow to learn the what and the how.
Collecting more data therefore will educate AI more quickly; the next horizon is to make the nine billion micro-processors that are shipped every year become SMART devices. The micro-processor in your toaster, your alarm clock, your motion sensor light can become part of the data collection capability that will be responsible for our education of AI. The sheer growing size of data is something well documented, the creation of data will have reached a new horizon by 2020 and will look something like the figures below:
20 Billion SMART Devices will exist in the world
(8 bits to the byte, 1,024 bytes to the kilobyte, 1,024 kilobytes to the megabyte, 1,024 megabytes to the terabyte and 1,024 terabytes to the petabyte) The average mobile phone now has 128 gigabyte; the first man went to the moon on a computer that had less memory)
So much data to educate the AI of the world, the insights that could be gained are incredible.
The journey from what we know as an IT enabled world to a digital world sees the move from ubiquitous computing to Artificial Intelligence as a pervasive way of life and then on to a world where we live in a multi-sense and multi device experience.
The impact on the relationship between us and technology has evolved in how it is perceived; technology was ‘simply’ a tool, initially as AI evolved it worked for us as a subordinate and as AI evolves still further it will become more of a social peer in how we consider what it can offer us in healthcare. The most common Christmas present in the UK this year was one of the voice activated assistant, people all over the UK are now having chats with Alexa, Siri, Cortana or simply saying Hey Google to find out some fact that just alluded them or to ask for a simple task to be done.
The original concept of distributed computing (or cloud) gives us the ability to create the computer power and data storage that is needed to evolve AI capability. Distributed compute adds IT complexity, it is now our job to find ways to tame the complexity by ensuring consistency and a unification of experiences, this applies more to digital healthcare than any other ‘business’ as we try to utilise digital as a way to standardise the delivery of care as much as we possibly can.
The definition of Artificial Intelligence is said to have been first coined in 1956 in Dartmouth, the journey from this definition now includes the term Machine Learning first applied to algorithms that are trained with data to learn autonomously and more recently since 2010 the term deep learning, where systems are enabled to go off and simply learn beyond a set of specific parameters. The art of clinical practice, the need to have a human touch though is well understood in healthcare. This is why more and more AI in healthcare is referred to as an ability to augment the delivery of care, AI does not deliver a solution to offer less clinicians in the service, what it does is remove the need to have clinical time spent on anything other than patient care, AI offers the opportunity to increase the human touch. A further quote reinforces this in the book The Future Computed;
In a sense, artificial intelligence will be the ultimate tool because it will help us build all possible tools.
Eric Drexler author of Nanosystems: Molecular Machinery Manufacturing and Computation (1992)
The journey to AI in our world is getting quicker. The journey to AI being successful is best measured when the different components of it reach parity with us humans;
The road to an AI augmented world though is about amplifying human ingenuity; AI can help us with reasoning and allow us to learn and form conclusions from imperfect data. It can now help us with understanding; interpret meanings from data including text, voice and images. It can also now interact with us in seemingly natural ways learning how to offer emotionally intelligent responses. A Chat Bot launched in China now has millions of friends on across multiple social media channels, it has learnt to offer help to its ‘friends’ that are demonstrating symptoms of depression, phoning up friends to wish them good night and offering advice and guidance on sleep patterns but in a very human way.
Gartner have reported that the ‘business opportunity’ associated to AI in 2018 is now worth $1.2 trillion! Suddenly AI is the new Big Data which was the new Cloud Computing, which was the new mobile first. All of these terms have had hype but have all in reality brought a new digital pitch to our business strategies and our lives.
Great Ormond Street Hospital in partnership with UCL is leading the way in AI application into healthcare with several projects delivering startlingly real results.
Project Basecode: Transcribing speech in real time and utilising AI capability to add information to spoken word dictation capture.
Project Heartstone: A device for passing messages, verbal and video to patients of GOSH that may be too young to have their own Smart Phone, the device can be expanded to offer services to children who may be deaf or blind.
Project Fizzyo: Puts in place gamification to the delivery of breathing physiotherapy for children with Cystic Fibrosis and captures the information for the clinical record offering analysis as it goes.
Sensor Fusion: Creates perhaps the most immersive AI elements in healthcare today, recording events throughout the hospital, offering machine learning developed advice and data driven descriptions of events as they occur.
At Leeds Teaching Hospitals Trust we have created a platform in the form of our Electronic Health Record (EHR). With this platform we can now begin to consider how this clinical push for AI and the difference it can make to patients lives and the way we work can be achieved in a carful and considered way.
This digital revolution can make a real impact on Leeds; the patients, clinicians and staff enabling us to provide the care we want to provide following the Leeds Way principles with digital as a supportive backbone.
If you want to know more or have an idea as to how you could help in this area get in touch with us via @DITLeeds
First published in CIO Magazine, November 2017.
In 1797 George Washington instigated the first handover period for the presidency of the USA, he handed his responsibilities to John Adams. Since the 1960s a 72 to 78 day handover period has featured in every transition of the presidential role, and yet in almost all other public sector and civil servant role changes a handover period simply doesn’t happen, in all the CIO roles I have had I have never had the opportunity to conduct a proper handover one that means you hit the ground running, rather than running to catch up.
In a few days time I will leave Ireland for Leeds after three years working in a country with a passion for what digital can do for healthcare. When I resigned from my post my boss, the director general of the health service here in Ireland could see that there was a need to have a careful, considered and informed handover process to maintain the pace of change that we have been working to. In a break from what would have been the easy decision it was decided to look outside of the Office of the CIO for an interim person to hold onto the digital healthcare business and to receive a handover. Appointing a progressive, digital business leader to the role of interim CIO eight weeks before my departure has meant we have been able to work through a handover of the business, we have been able to agree priorities for 2018 and at this time in the Irish political calendar we have needed to agree how the budget for next year should be spent.
CIOs need to get better at succession planning, I would suggest one of the reasons we have not been seen to be great at this so far is that we have very much an individual stamp on the businesses we run as CIOs. Our styles and how we work with the ‘business’ to achieve digital goals is one of our core values, handing that to another is always difficult.
With an interim CIO appointed we began to plan the handover, we broke the content down into areas that would make the most impact the quickest, what this did was highlight a prioritisation process for the work of the team and the office.
There were five themed areas that we agreed would be our area of focus:
1 – Delivery of Person Centred Care
2 – Trust and the Protection of the health systems assets
3 – Value add services – Patient focused innovation and proving the digital capability.
4 – Create Insight and Intelligence through data that is already collected.
5 – Connect the Care Delivery Network
The digital strategy has been in place since 2015 and the delivery plan for this was agreed in 2016. This means the interim CIO can move into the continued delivery of this, however what does need to be refreshed is a new operating model for the Digital team, an operating model that reflects changes in how service is delivered and how engagement can be brought from a digital responsibility to an organisational scalable way of working. This now becomes a priority for the new CIO, not always ideal, making changes in the early stages of taking on a new role but a necessity to continue to enable the evolution of the team.
Being able to instigate a proper handover has given the organisation the opportunity to really consider the way the team works as one function. In a recent Gartner presentation the idea of four digital accelerators was raised and how these are now being applied to the future of team working. These areas are; Digital Dexterity; Talent, Diversity, Skills and Goals; Network Effect Technologies and the Industrialised Digital Platform. The handover process with these as core values as to where and what is done next has helped hugely as we strive to put in place a robust way forward that continues to drive a new pace to digital in healthcare.
The handover process has included not just a new ownership of the digital agenda but a new face of the change being brought to healthcare through digital. Therefore involving the new interim CIO in all engagement events has been part of the process and one that has seen the new CIO move into the public eye. The handover has also been delivered in the public domain using social media as the platform to enable the team and our partners to see the process and to meet the new CIO in a virtual way. The #HandoverCIO has been used as a way for stakeholders to see the activities that are underway. The culmination of the handover process was a meeting of all partners to an open interview with me and the new interim CIO, the design of the session was to make it part of one of the quarterly Eco-System meetings but also to ensure that the partners could see that they were going to be able to continue to evolve the relationship they have from a traditional vendor relationship to one that continues to be described as a partnership.
The transition from Bill Clinton to George W. Bush in 2001 was a fraught process best epitomized by the Clinton prank of the removal of all of the ‘W’ keys from keyboards throughout the Whitehouse. The transition from CIO to CIO often does end up with a lack of knowledge of where ‘the bodies are buried’, a phrase used when I came to Ireland in 2015. A colleague offered his services on my first day to help me avoid digging up the bodies that had been carefully hid. By working on a handover process and a proper transition there can be no ‘buried bodies’, no surprises and no need to re-learn what has gone before.
Handover has been great, but now its time to let go as the quote suggests below…
Make yourself available for advice if they want it, but only if they ask for it – don’t stand in the shadows trying to hang on to something you’ve decided to stop doing. Professor Graham Moon
Giving up your ‘baby’ is hard to do but as a CIO in transition to a new role it has to be done smoothly and the new CIO empowered. As handover comes to an end please support a new CIO with advice and guidance, Jane Carolan is a digital leader that is now a CIO, she is excited to be in the role and can’t wait to engage with the wider CIO community, tweet Jane @janemcarolan
The 31st of July was a very sad day for me, it was the day I had to sit down with the Director General and say those words, ‘I resign as CIO of the HSE.’ Nearly three years in Ireland has been amazing. In the following week one of the team asked me, ‘was it a hard decision?’ Yes it was, one of the hardest I have ever had to make, over the last three years I have met some of the most committed and talented people I have ever had the pleasure to work with, a team of people who truly, with the right support, can change the face of a country!
Some of you will have heard me tell this story before, so please forgive me; my second day in Ireland, I grabbed a taxi, the Dublin driver turned to me and did the usual, where are you from etc, and then asked what brings you here? I replied without hesitation, somewhat green to Ireland and the culture, that I was working for the health service. The taxi driver stopped in his tracks and said, “You have a lot to learn, you have joined the second most hated organisation in Ireland, after water Irish people hate the health service the second most!”
I assumed he was joking, but no he was kind of right. The health system of Ireland is not a loved system, its not cherished, its described as bloated, regularly someone has a ‘pop’ at it being top heavy, or spending money wrongly, or deploying resources in the wrong places. Yet, here we are with a health system that every day saves hundreds of lives, a system that has a workforce like I have never seen before, a committed one that knows how to deliver care with compassion and often against adversity.
Let me take my own crisis management experience in Ireland, Wannacry, as an illustration. On the Friday evening the team identified the global impacting issue was heading our way, without any consideration for the plans for the weekend the team mobilised, created a defence strategy and set about working all weekend, all hours of the weekend, to protect the systems that delivers care to the Irish citizen. Nobody was paid to do this, no one received any bonus, time off in lieu or really any kind of recognition other than a heartfelt thanks from the system. In fact some ‘friendly’ people on social media suggested that the strategy adopted was even wrong, and that the focus should never have been needed if the HSE had been more prepared. I was so proud when on the following Tuesday we returned all systems back to normal and were able to say we had protected Ireland when others across the world had not been able to achieve the same.
Leaving this role, not being part of the team in the HSE leaves me with so much trepidation; the personal focus that so many people have put into the changes that we have made over the last three years is significant, I wonder if this ‘perfect storm’ of personalities will ever be created again. One of the first programmes of work I ever owned in healthcare was the delivery of a system called the Data Transfer Service (DTS). The solution was a new way for primary care and acute and administrative functions to share information securely and in a timely fashion and we had to deliver this in thirteen months, this was back in the late 1990s. I thought that was the best team I had ever worked with until I came to Ireland.
The team make-up is a happy accident that has evolved to be one that I will look to emulate elsewhere. The team is a mixture of evangelists, sceptics and pragmatists, after a couple of years in the role that mixture hit the right balance. The team has a group of people who believe in being open and a sub-set who understand the need to be closed. The creativity in some has been astounding and the sheer dogged focus to keep going in others has given us a drive that has seen us get to the finish line on so many projects.
What I have learnt is best described by a Yorkshire phrase; “It takes all sorts!”
Handing the team to a respected, committed and digitally enthused leader has given me a new reflection on what can be achieved. The team are gathering around my interim replacement ready to support her and help her continue the success, not just of the last 3 years but the building success that the team has been trying to achieve for the last decade. There are some new tools now; a ‘brand’ that is synonymous with success and openness is in place in the form of eHealth Ireland. The health identifier is a foundation for information stored digitally, enabling a leap forward in patient safety initiatives with a data flavour. Ireland and its health system has a renewed vigour for what can be achieved in healthcare through the foundations of a digital system. Its first examples of digital hospitals are live and are a success, the programme to sequence the genome of patients with suspected epilepsy is changing the lives of many people this year, people with a disease that is often not considered high enough up the agenda. The readiness to consider innovation, how to work with the new, the fresh, the different ideas is also now part of the way the Irish healthcare system is changing and delivering benefit. In the last 12 months alone there have been over 50 new digital solutions deployed into the health system, each of these implementations requires the unwavering commitment of a team to make the system live and support the system going forward.
Perhaps the biggest ‘thing’ that we have achieved though in the last three years is to place the possibility of digital in health on to the agenda. We have a minister who says that digital is no longer a nice to have, we have a HSE leadership team that has embraced the concepts of digital into the way it works and the way it considers reform. The representation of all of this is the passion of the team that deliver this though, as my goodbye reflection I want to pause here and call out, maybe even embarrass a few of them, “live” on this blog site, to be remembered here and learnt from in the future.
First and foremost, an often unsung hero of the team is Joyce Shaw, the driving force in how we have transformed as a team, a lady with a passion for the team, how It works and perhaps most importantly the reality of people working hard together. Joyce is the conscience of the team!
The most considered, calm and truly gentlemanly Fran Thompson would be next on my list of essential elements to any team of the future. Without Fran being there through thick, thin, muddy and clear so much of what has been achieved in the last three years would have got absolutely nowhere.
When I consider the team that we were in December 2014 and think about the difference people have personally made I have to call out Michael Redmond as well. Michael is a true example of a leader building through engagement. Working with Michael and seeing him go from sceptic to optimist over a three year period of time has been one of my own personal highlights.
The eHealth Ireland committee has been a joy to work with, and is a group of people I now call friends, Eibhlin Mulroe, Derick Mitchell, Andrew Griffiths and the ever committed Mark Ferguson have ensured that the path we have walked has been supported. The success of the eHealth brand can be put down to these people and others in the committee who work hard in the background ensuring that we can make a success of what we do.
I have been lucky in that I have worked for two ministers who have wanted to engage with the digital element of health in a different way, they have taken a personal interest in what we do as a team, supported us and been there for us. eHealth Ireland has been able to enjoy an open door to both ministers over the last three years an acceptance and realisation that the team here in health is a high performing team of committed and capable staff is a great by product of that engagement.
A wise old colleague of mine said to me once that those of us that want to evolve and change simply need a good manager, once that person is in place we will be able to achieve anything. It felt a little like a piece of Jedi advice at the time but working for the DG of the health service here in Ireland I now understand. The DG has empowered us to get on with it, insisted we stay calm in the most stressful of situations and supported all that we have tried to do in a way that ensures success, certainly without this support we would still be thinking through how to make some of what we have achieved happen.
There is space for just two more names on this list for fear of it turning into a gushing speech that no one will read.
Niamh Falconer is my conscience, where Joyce ensures the team has a voice in everything Niamh reminds me of my voice in everything, caring for me and reminding me that successful change needs time to happen and time can’t be magically created; although she has had a magic wand in her hand for the last two years doing Tinkerbell like tricks to make sure we can do what we need to do.
Last but not least is Maria O’Loughlin, when grey clouds appear Maria has blown them away for so many parts of the team. She has a unique ability to translate ideas into reality whilst adding a shiny creative style to them, if we adopt Pareto’s rule Maria is the way to achieve the last 20% in all that we do.
Calling out individuals is dangerous, I know that, the reality is that in every single case of every person I have worked with over the last three years they have touched what we have done and indeed who I have become in some way, I would love to simply list everyone here now but no one would find that an interesting final comment from me.
A vision of the future has to be my final comment, I came to Ireland in October 2014 to present at the HISI conference what my vision of the future would be, I think much of that vision is still valid! The purpose of eHealth in Ireland is to create digital as a platform for change, a platform for a health service that has every citizen’s health and wellbeing at the heart of what it does.
If I could have a final wish it would be;
… be ‘nice’ to the system that is there, help it continue to evolve.
It needs to find a new way to celebrate what it is, the Health Service Executive is the life blood of this country, treat it as that, realise what is limiting its capability and focus on fixing that rather than damaging and attacking the resource that is at its disposal. The HSE is an organisation that is committed, it is an organisation that is caring and it is an organisation that is capable, treat it as that and it will deliver the best healthcare system for the population of this great country.
Biden Vs Faulkner, whose data is it any way.
Having a common enemy, a common ‘bad guy’ will always help a cause. A figurehead to rally against is one of the best motivators for the creation of a movement. Maybe in the last few weeks the Biden vs Faulkner showdown will be the catalyst for a new lease of life for the patient data movement. If the reports are true the Chief Executive of Epic; the Digital Health multinational may have ignited a new enthusiasm for patient data openness, by challenging Joe Bidden as to why on earth a patient would want access to their own data.
The conversation is said to have gone like this; Faulkner was amongst a group of healthcare executives gathered together to discuss with Biden the Cancer Moon-shot. The internet based magazine Politico reported that Faulkner raised questions about the utility of patients being given access to their own health records in a digital format.
“Why do you want your medical records? They’re a thousand pages of which you will understand 10,” she allegedly told Biden.
“None of your business why, I, the patient want access to my information,” Biden is said to have responded. “If I need to, I’ll find someone to explain them to me and, by the way, I will understand a whole lot more than you think I do!”
The culture of digital health organisations in the UK and Ireland has changed over the last decade so substantially that Faulkner’s comments sent many of us into shock. I distinctly remember arriving in Ireland and in 2014 and being asked to take part in a patient advocacy roundtable. At this event the gentleman who represented the Parkinson’s patients of Ireland towered over me and demanded that I, “… stop pussy footing around and get my data shared if it means that a cure can be found for this god-awful disease!” His premise was that if I didn’t he would and he wanted his information now, on a memory stick so that he could give it to an academic.
In the US we are told that the way the patient portal payment structure was created for meaningful use means that vendors were paid on a ‘log in attempt’ basis, this meant it was in the vendors interest to lodge a member of staff in waiting rooms and ‘help’ patients log in to their records, just the once. Pretty much taking the meaning of the phrase meaningful use and throwing it away.
We can also think back to the National Programme for IT in the UK and its version of patient access, HealthSpace, I can place a clear reason why that didn’t take off too, it was so very very hard to authenticate yourself before you could use the service. It required to visit a library with three forms of ID, to receive a letter with a PIN and then set up a significant password structure, the drop off rate before people got to view their records was huge, and understandably so. And yet here we are in 2017 with a new start up bank, N26, who have the technology to allow you to authenticate who you are with a camera on a mobile phone, from the safety of your own bedroom you can have a bank account up and running in eight minutes! Technology moves quickly and really does allow us to implement the digital health dreams we have.
So there are a few technology examples of Faulkner being right, well at least the technology not facilitating her being wrong! But, now glance over to Finland and Catalonia two regions that have proven the ideals that Biden has described for patient access to information to not just be the art of the possible but be actually here now, information in the hands of the patient and making a difference to the care being delivered.
The first time I heard the solution that Finland has created to this issue I was in awe; the work is a partnership with Microsoft and shows the innovation and ingenuity of the possible through partnership, clever thinking and a will to put the patient at the centre of what can be done. In Finland the national electronic health record is effectively a set of data that is mirrored to two windows. The first is the clinical EHR, the first place the clinician sees information about their patient, the second window is the patient version of the same, the key difference is the patient can add information to the record via their ‘window’. The patient can add free text or wearable gathered data or home held diagnostic information, the clinician can see this information and decide to add it to the clinical side of the record. The clinical governance of the information is still held with the clinician but the ability is now presented to the clinician for them to value the patient input to the record and move it over to their ‘window’ on the information, thus giving it the clinical validity it deserves.
Suddenly the comment made by Faulkner become even more ludicrous; the patient information is not only about them and owned by them but now has real clinically valid input into the care being prescribed and practiced, let’s not forget that this is the person Faulkner is worried won’t understand the information, they are now an author of some of the information.
The next success story here must be the amazing work that Tic-Salut have done across Catalonia in this area. They have created an eco-system throughout the region that has driven a new type of credibility to the delivery of patient access to information. The proliferation of health apps is huge; in Catalonia the market place for these apps to be released into has been created by the health system itself. An accredited app store for the healthcare system built to allow patients and clinicians to use health apps with confidence. Unique though to Catalonia is the arrangements put in place around the data that these apps can use. If you have an accredited health app one of the conditions is where the data is made available, not just within the app but in a secure, audited and protected way the data can be used within the health care systems own information systems. What Tic-Salut have done here is ensure that the lines between clinical data created by clinicians can be blurred with the data created or collected by the citizen and patient without overloading the clinical team with data, after all data is only useful when it becomes information.
Then we come to our own projects; in Ireland we have a decade long history of under investment in digital health to first get over to allow patients digital access to information, but, in Epilepsy we are seeing an almost immediate patient impact by having access to information. The patient portal trialled in the delivery of care for patients with Epilepsy has been a huge success for many reasons. First and foremost the portal and its functions have been co-designed by the patients and families themselves, the elements you can do with the portal are exactly what the patient wanted to be able to do. So viewing the clinical note is there as a function that has been seen as being useful but also the new ability to record a seizure, its severity and frequency and type has enabled a new paradigm in the delivery of care.
The ability for a patient to be significantly involved in reviews of medication efficacy through the capture of data has seen around 100 patients come off anti-epilepsy drugs since the portal has been introduced. I have championed digital solutions for the care of epilepsy since coming to Ireland in 2014, largely because of the passion that clinicians and patients, the careers and the special interest groups have shown for what can be done here. I hope that this light house on the art of the possible in Ireland can continue in to 2018.
In Ireland we have a plethora of digital health start-ups and new organisations. The Jinga Life team for me are delivering a solution that is a ‘light at the end of the tunnel’ for what can be done in Ireland. A design unlike any I have seen in healthcare, truly a delight to use and see. The concepts of Jinga Life is to concentrate on the key member of the family who is ‘tasked’ with the care organisation of the family. In their research over 90% of care is managed and organised by the female in the family. The Jinga Life portal allows the family member a tool to organise that care and to provide new data that can become clinical information to the clinician. Part of the success on the build of Jinga Life is its clinical and patient focus, definitely one to watch and one that I hope will show Faulkner yet again how wrong she is.
In the same week that Ireland launches its Open Data portal this data debate rages on, whose data is it anyway? Much can be discussed here but one thing we do know, its not the data of the digital vendors that are out there, and we need to seize back the ability to get at that data. A patient engaged, involved and aware of the information that is used for their care is a patient that can be part of the clinical delivery process, a patient empowered to help themselves.