A year ago we were invited to be involved in the Future Health summit for the first time. We built a house as the theme for the event, from blue print to decoration eHealth experts from across the EU used the story of creating a new build as an analogy to describe how eHealth Ireland could build on the foundations it was putting in place to create an eHealth system that could deliver a digital fabric for health in Ireland.
A year later and we have a different theme this year. The eHealth Festival has been pulled together, imagine the process of moving from foundations to a woven digital fabric throughout the country and the complexity of doing this, we have landed on an analogy for this too, putting on the mega festivals across the world, Coachella, Glastonbury and Electric Picnic. Surely a task with a long term view, a success criteria that includes immediate success and bringing joy to millions of people. The team are working hard to put on the festival all day on Thursday.
The eHealth Festival is a truly global affair, taking lessons and experiences of digital health from across the globe and applying them to the plans for Ireland. The first stages will be to consider what it takes to find the right festival site and theme, applied to the delivery of eHealth this section will focus very much on how to set the vision for the future as thoroughly as possible. A number of key speakers with NHS experiences will provide us insight into how engagement was gained at a plethora of sites with very different focuses ranging from a wide ocal geography coming together to adopt a standards based approach to the adoption of an open source model across a major cities record sharing approach and on to a major London hospitals insistence to get it right and not ‘simply’ follow the model brought to bear before.
Every guest speaker has been set a number of music festival themed challenges over the day too, ranging from the slightly different event photograph to a whole series of theme songs being picked; some of the music could get loud! Picking the theme songs has been an important part for each of the presentations as it will reflect the theme of where the presentation goes, so listen out for that.
In keeping with the way eHealth Ireland has evolved over the last year there will be some focus on the way we engage on technology in health as well. One of our partners Think Visual will be able to provide a different insight into how to engage clinicians and patients in a different way, using pictures and visuals to create a journey for them to join us on. This promises to be an exciting look into the art of the possible in this area.
Our focus has been on health care and a somewhat traditional version of health care over the last twelve months, the ability to deliver a new paradigm of research capacity with digital health must not be forgotten, nor must the citizen choice in how this occurs. With this in mind we have a speaker with a huge amount of experience making a health charity digitally capable, the lessons we can take from this I am sure will set the agenda for us in this space.
As with last year we have tried hard with the theme and the brieif to speakers to keep the ‘sales pitch’ presentations away, at the eHealth Festival it would be like the Darkness reforming! But, we need to create relationships with the vendor community over the next year that is a for sure! So in keeping with the festival theme the vendor community will be putting on the record label A&R man guise and trying to encourage us to understand why their label is the one of choice, why they are the Factory Records of the 1990s and not the SAW of the 1980s.
To round off the day we have a speaker by very popular demand, an expert in information governance, information security and getting the handling of data right. Asking a lady from Liverpool to speak on the theme of securing a festival is always going to be a little dangerous so expect some fun to round the day off.
As with any great festival there will be a few secret unannounced shows too by way of a couple of announcements that should set a tone that is exciting for the next twelve months, initiatives with internal and external focuses.
All that really will remain to say is… Put Your Hands Up For Detroit – All will be revealed!
Gareth Baxendale is the head of Technical Services at the NIHR CRN, he has a unique view as to the technology and solutions deployed in our organisation. He provides business ownership for the strategic infrastructure in our organisation and knows his onions!
When you think of Oracle, the first thing you likely think of is ‘database’. While this is true, and is a major flagship of the company; it’s interesting to consider the vastness of Oracle’s offerings… Like modern supermarkets, Oracle will sell you almost anything under one roof…
Consider their ever growing ‘product list’ which currently stands at 922 and you get the idea that Oracle have an ‘app for all occasions’. In fact they do, if you’re looking for a financial package you can select from numerous options available. If you’re in the market for Business Intelligence tools, then Oracle will open their inside coat and dazzle you with an array of BI watches to choose from…
But as with most major enterprises, Oracle do not develop all their own products from scratch, in fact if you compare the ‘Acquired Products list’ you will find that 418 products are listed. Oracle acquire businesses and more importantly IP and a live customer base as the need arises, and unlike other more tightly constrained enterprises, Oracle’s portfolio appears to be without limits other than, ‘if a business needs it then it shall be added to the list’.
Over the years Oracle has acquired some big names, take for example SUN MicroSystems in 2010, they do a small product called JAVA, now one of the most widely used programming languages in the world… and installed on 3 billion mobile devices, and 125 million Smart TV’s, not bad for a company that just does a database…! not many tech companies can make such grand claims, even your BluRay player has JAVA built in. More recently acquisitions are very much cloud based technologies to augment the portfolio of offerings and to satisfy customer’s perceived needs.
All very impressive, but developers still raise the question “how do we get it all to work together?”. Oracle happily provide ‘suites’ of technology that all integrate, take theirMiddleware technologies as an example. Many of these offerings are from acquired systems rather than built from scratch, which is fine, however this often leaves the whole ‘integration’ piece to become a bit of an ‘art form’ by skilled developers who have honed their skills over the years and often apply workarounds until a ‘new release’ is available. This is not to say that the products or approach are flawed but you will have to take a considered view of how you develop and maintain Oracle systems long-term and the return-on-investment against your business strategy.
Oracle’s tag line is “Oracle provides the world’s most complete, open, and integrated business software and hardware systems.” Can’t argue with that, Oracle can be considered a one-stop-shop for all your business needs, however it does not necessarily translate into reduced business risk or reduced operational costs. On the other hand you will be supported by a $37 billion dollar a year company which, arguably, comes with certain assurances.
Oracle do some amazing products, not just their famous database, but as always you must consider if you really want ‘all your eggs in one basket’ or diversify your technical portfolio with other vendors, although you still have integration to think about… Sorry!
To hear more from Gareth go here – Gareth Baxendale
Security and research information is a hot topic right now for a number of reasons, not least the transparency agenda and the desire, quite rightly, to be as open as possible about data relating to the conditions and outcomes of clinical trials. However the information security of research data more generally has always been an area that is difficult to quantify. Go back to the excellent ‘The Cuckoo’s Egg’ by Cliff Stoll and there is debate regarding the perceived value of research data:
“… our data was either worth nothing or zillions of dollars. How much is the structure of an enzyme worth? What’s the value of a high temperature super conductor? The FBI thought in terms of bank embezzlement; we lived in a world of research.”
Clinical research is big business. Nations and companies compete to be first to deliver new drugs and treatments to patents. This means the security of clinical research data is under pressure, particularly when juxtaposed with the transparency agenda and our desire to open data up as much as we can to facilitate improved performance through insight derived from information.
But what is open data? The comedy answer is that it is data that is open! But it is as simple as that for our organisation and, I believe, for clinical research data generally. We need to transform the power of open data to make it useful. We need to make open data valuable, to do this we need to show the value that open data creates.
Open data, to our organisation is:
“…data that can be made use of by anyone within the organisation through analysis, linkages, and evidence based delivery.”
So, many will say not really open at all then, as we are limiting access to the detailed elements of information to within the clinical research organisation. But, even that is far more open than we have been able to orchestrate in the past and is a starting point for how we begin to open up appropriate information.
Compared to two years ago we have made great strides forward in our ability to be more transparent. For example, apps to enable the public to see what research is underway in the NHS and systems to enable the life sciences industry to track their study throughout the NHS.
The definition of protecting open data stretches beyond the definition of information security. The easiest way to understand how to protect the open data is to break down the principles of what impacts on it:
Content: The what – Information relating to the performance of a clinical trial in the NHS, the resources it uses, the resource it requires and the content of the trial.
Scope: The why – To enable insight from data through the linkage to other data and through the exposure, via business intelligence tools that enable information to be delivered to decision makers.
Policing: The rules – Data relating to competing industry partners shall not be made available other than in aggregate form. Data linkages to other data sources both within the organisation and open data sources can be done by those within the organisation.
Stakeholders: The who – Only bona fide individuals from within the organisation shall have access to the full data set. Decisions to open up further will be taken in conjunction with all stakeholders.
Lifespan: The when – As near real time as possible and clearly identified at the point in time it is from.
Now these key principles are known, defined and agreed across the business it becomes much easier to then create matching key principles for securing and governing the open data:
Managing the re-use of data. This becomes more important with open data. As the authoring organisation, there is a need to know, and to some degree control, where data is re-used, particularly where data linkages are possible. The implications of reputational damage from the reuse of data need to be managed and the owner or author of open data always needs to be maintained so that data can be traced back to the originator.
Corporate responsibility for the delivery of open data and the governance of it is done through the policing of a code of conduct for the use of data. Enforcing outcomes due to the result of non-compliance becomes a corporate responsibility. The outcome though, needs to be commensurate with the non-compliance, so the removal of a licence to use the open data could be a balanced measure to misuse.
Triggers for the review of the open nature of the data also need to be in place. An external review of data, maybe even an organisation-wide audit can enhance the definition of open data and the trust in this. As an organisation the NHS has an Information Governance review each year, which we now comply with as an organisation and as we further enhance our definition of open data we will audit our own open data policies and procedures.
An area of great care that has to be considered is ‘small numbers’. Can linking open data in small numbers break confidentiality and expose identifiers that should remain secure? A policy on the opening up of data relating to ‘small numbers’ has to be created and adhered to.
The veracity of open data, the speed at which open data is created and linked to other data sources needs to be managed and governed. The data that we open up has quickly become a big data set, which requires additional policies and procedures to protect it.
The design of open data security can make or break its implementation. Even the word ‘open’ can cause some issues and certainly there is a nervousness around the concepts of opening up data in any industry, which is why great care needs to be taken to demonstrate the business benefits and clearly communicate the checks and measures in place.
For our organisation the business benefits of a secured open data solution are:
By releasing these benefits the value of open data becomes apparent and the checks and measures in place allow a wider audience to be considered for access to the data. Open data needs to be actionable but also beautiful and simple. Open data creates the power to disrupt, improve and make the world a better place and makes research easier to complete, more quickly, more successfully and at a lower cost.
An expert in the field recently said to me that he was fond of a clinical research ‘reverse adage’, “A month in the lab can save 30 minutes in the library,” he had a recent version of this he shared, “A years worth of a clinical trial can save a day analysing data!”.
‘Imagine a world’ is a phrase we are using quite a deal at the moment as we try to tell the story of how our information systems will come together in April 2014 to deliver an integrated solution for the performance management of clinical research. In two years time it will be the year that Marty McFly went back to the future, and yet we don’t have the hoverboard seen in the sequel, and that is rubbish! But we will have a Information Systems that effectively change the game. This blog is an imagine a world scenario…
“Data in clinical research? You mean information and insight don’t you?” yelled the latest participant in the clinical trial we have established to consider the impact of a new drug on hearing problems brought about by the loud music available to the teenagers of the 2020s.
Information gathering is now so much easier than 17 years ago. Here in 2030, the trials of 2013 are just delivering the drugs they were considering into man, whereas now, with the access to real time data and the mobilisation of patient access to information and the enablement of the clinical trial participant through the implementation of truly mobile data systems, new drugs are available to man in less than half that time. Information is no longer the longest pole in the tent!
Let me explain. We now have a global standard recognised across all government and life-sciences industries for the sharing of information and the collaborative recruitment of patients. If a scientist in Boston, USA needs a participant with a rare disease and a set of criteria that are complex, the scientist is able to place that call for participants within the information system, asking for a patient globally to come forward to take part in the clinical trial. The scientist in Boston, USA can easily recruit a patient from Barnsley, England. The additional difference is that now all clinical trial information is now truly open and participants are far more willing to put themselves forward, not just for the good of mankind but often, due to the reduction in the time drugs take from bench to man, for the good of themselves.
So that’s information systems aiding recruitment and opening up the data. The actual collection of data is now also resolved, not always on a global scale but far more opportunities are in place. With the advent of the truly electronic healthcare record across care settings came the ability to access real time data about a patient in a clinical trial. With the new anonymisation capabilities within these systems, the life-sciences companies and academic researchers are able to track any patient episode through the clinical system, knowing exactly the impact of illness on trials and understanding efficacy of drugs in a trial.
Gone are the days of drug recall or long replayed clinical trials. The volumes of participants can also be much higher as the information systems to gather critical information are automated directly from the clinical system of each country taking part. It is therefore easier to have large numbers of participants utilising access to real world data and then through the open agreements between companies there is far less running of the same trial with a different colour label on the drug, as companies are able and willing and public opinion has ‘facilitated’ them in the sharing their information.
For the participant, the most exciting information enabled change though has to be the collection of information itself. When they first became available, solutions to monitor the health of the person were marketed to the worried well: systems to enable a person to track their own sleep patterns, heart rate and insulin levels. These systems have been significantly developed over the last 17 years and they are now part of modern day life. The ability to monitor key health indicators from the clothes we wear is common practice. To have the ability to update simple patient logs through items that the participant wears or uses all the time has had two key impacts, the number of willing participants for clinical trials has increased as taking part in a trial is no longer intrusive on the daily life and taking part in a trial can often provide access to the latest “toys” for communicating health scenarios and clinical outcomes.
All in all the impact of the modern information system on the ability to make new discoveries that make people well and keep them fit and healthy has been staggering. The life-science system now recruits patients in the volumes they require at the speed they need to. The transparency and openness of the information they gather has increased the public perception of clinical trials and the drug companies and has reduced the repetition of clinical trials significantly. Empowering patients through access to systems that enable them to monitor and evaluate their status in a clinical trial has further enabled opportunities for real time data and the ability to trace the efficacy of new drugs beyond the older phase trial approach.
Marty McFly visits 2015 in Back to the Future 2, the setting above is set slightly ahead of that, but not that much, many of the elements described are possible now, they simply need mainstreaming to truly deliver data utopia for clinical research.
Leading a team. How did that become the key role of an Informatics specialist? The day the specialist became a CIO, that’s when! Trying to build a team whilst leading a team and trying to create enthusiasm in a whole team … that is a basic skill of the successful CIO in 2013. What is the word for that skill?
It is worth considering that today, out of all the board level specialist roles, this depth of responsibility applies more to the CIO than any other C-Suite member and whilst this depth is required, woe betide any CIO that doesn’t at least try to keep their specialist skills to hand. I have a friend who berates me on a regular basis for not retaining knowledge about basic cabling… how many people had their best man use a CAT5 cable joke at their wedding?!
The three analogies that I believe are applicable to the role of the CIO in an organisation that believes in the progression of innovation and its impact are described below:
Managing a Fantasy Football team – The season is a few weeks in now, and after an initial flurry of activity the vast majority of the league has lost interest. Come the transfer window, they will all be back but for now it’s just that core 10%, moving and shaking, trying to get the most out of a limited resource and trying to avoid the teams they don’t like and not make too many transfers. Not too dissimilar to that horrible job of juggling the org chart. Creating the right team at all levels is the most important job of the CIO in 2013. Today a number of different supportive teams exist in the Informatics Directorate in my organisation, but, they are in a state of flux. Trying to provide stability falls to the CIO, and not dissimilar to the Fantasy Football scenario, some ‘team managers’ will leave their team well alone until the transfer window. But which is best? To tinker and try to keep it always optimum, or to leave well alone and allow stability to set in?
Red Setter puppy syndrome – A number of years ago I bore witness to the description of a management style as being like an eager to please Red Setter puppy. At the time this wasn’t particularly complimentary, but I now think maybe it is, with the right “owner”, a style that the CIO needs to adopt. I think this may be controversial, but a CIO leads a service part of any organisation, one that has customers it should treat as customers and not as a captive audience, and, if as a leader the CIO can imbue some natural enthusiasm for caring for customers, then surely the Red Setter puppy syndrome is no bad thing. Before anyone jumps on me though, I am not suggesting that enthusiasm can make up for delivery or that every customer should be worshiped, but if we could get away from the ‘IT Crowd’ stereotype then that would increase the perception of the delivery of service to the organisation. Let’s face it, everyone loves a Red Setter!
Building rockets with lego – One of my favourite bands of all time keeps releasing music under different names: Grand Drive, Danny George Wilson and now Danny and the Champions of the World. Great music! A new song of theirs is (Never Stop Building) That Old Space Rocket, and it caused a thought. They sing,
“Never stop building that old space rocket, give up on the dream and you know you have lost it.”
If this isn’t the ‘prime directive’ of the CIO then what is? The CIO needs to be on the front foot of the collective thoughts about innovation. If the other two skills listed here are in the bag then the CIO can make the best use of the team to deliver innovation akin to building the old space rockets, and maybe even get to the analogous moon that changes ‘the game’.
In the same song Danny and the Champs sing, ‘Was it something about the great unknown, with stars in your eyes and your dream in your pocket’. Consider the CIO striving to drive the team to deliver the next new bright and shiny hope. The CIO has to have the dreams of the team in his pocket to be able to reference them and bring them to the fore at the right moment with the right credit to the right member of the team.
What is the word for that (these) skills? Maybe chief, maybe officer, maybe executive or maybe just pure and simple leadership is the best descriptor.
Leadership in an Information environment is the key skill. Regardless, that kit bag of skills and knowledge better get a dusting off if the CIO is going to be able to deliver against all these criteria.
All CIOs have fun trying though!
Innovation is an abstract of what we do every day, but a new system that has been a couple of years in the coming will be delivered by Father Christmas this year. A system that will become the spine of information systems across the clinical research economy in the UK, a system that will live up to its hype and can make the performance management of clinical research more easily achieved regardless of study type or location.
Like kids at Christmas we are really excited to have the new system implemented across the networks. It will be the fruition of many minds’ work to specify and design a system that meets a breadth of requirements. Turning business needs into system requirements, which in turn become a technical specification, has been a challenge, particularly when we consider that we have been attempting to ensure the whole network of users are engaged in the delivery. But, as we reach the last sprints of delivery, we believe we have pulled it off.
Making innovation a reality whilst maintaining engagement with a wide range of users is a challenge. The argument that Information Systems professionals are SciFi writers is often levelled when trying to deliver the “Imagine a World” speech.
Flicking through Sunday ‘Magazine TV’ after the wonderful Andrew Marr had finished tearing the latest political guest apart, I came across a very odd headline, “Would you allow a robot to look after your relative with Dementia?”. And there was me thinking the iOS7 was cutting edge! The thrust of the programme though was that technology is ‘nearly close enough’ to be able to deliver mainstream basic care to dementia patients through solutions at home. To me this seemed like something from a late 80s Sci-Fi TV series.
But it did get me thinking over my black pudding and eggs! How far has technology come in comparison to the old ideals of Sci-Fi, particularly in the field of health care? Some examples that sprung to mind: Star Wars – Immerse Luke Skywalker in a liquid jelly for a day and all will be well with his frost bite:
So after Luke is lost in the snow, gets beaten up by an ugly woolly monster and is visited by the ghost of his recently dead ‘uncle’, he eventually gets rescued. Once rescued, Luke is placed in a tank with a weird liquid that is healing his frost bitten body.
And now in 2013 we are able to do something very similar for patients with burns and indeed frost bite.
Star Trek – Hologram doctor and self diagnosis through apps the crew wear: Short of money and trusting a computer’s data base more than a human brain, Starfleet invest in a hologram doctor and fit the crew out with uniforms that monitor their medical conditions and collect the data for analysis.
And now in 2013, one of the hottest products of the year is the UP Wrist Band by JawBone, the perfect solution for the worried well and stay fit fanatics.
So, back to our solution for the performance management of clinical research delivery in the UK. It is no longer science fiction to think that we can deploy a system that can capture information about all clinical research in real time, and with reference data checks and balances within it that ensure data quality is of a very high standard. It’s a fact that by the first couple of months of 2014, the UK will have a system that enables information about studies, levels of recruitment and other none patient identifiable information to be made available to researchers and sponsors, so that research and trials can be managed in a manner akin to the delivery of other health care provisions.
So the next challenge to the team will be where the innovation comes next. I can’t wait to see how the system evolves and how it inspires and acts as a catalyst for cultural change in the delivery of clinical research. It’s going to be a very exciting time and nearly as exciting as the announcement that the next three Star Wars films are going to be made!
NB – The Central Portfolio Management System is the NIHR CRN system described above, the system is being developed by Tribal Education Limited and deployed by the Knowledge and Information directorate within the Clinical Research Network. The system will be launched in mid December 2013 and be live in January 2014.
“Turn around, don’t run upstairs, please don’t go in the garage”… all that is missing is, “I will be right back!” the joys of wonderful horror films! Would you ever knowingly take on a failing project with many of those horror film phrases as the advice from colleagues and trusted advisors ringing in your ears, do you want to be “Captain Turnaround”?
I have a friend who, ten years a go, over a glass of wine turned to me and said, “I want to be a turnaround CIO, the one that drops in, fixes it and hands it on”. The father of another friend pretty much was wedded to the idea that turnaround CIOs were akin to the Seagull analogy: flies around, drops “good luck” and flies off again! But sometimes, whether you plan it or not you end up in this role.
I was successful in securing a role a couple of years back, a role that was not advertised as “turnaround Charlie”, but a role that looked wonderful. Within the first two weeks I realised I needed a new name, and it had better be Charlie.
How to go about the turnaround role? Well, first things first, don’t upset the current apple cart would be my experience. If you do, then you’d better be ready for the disaster movie scenario, never mind the horror movie.
First, in that initial short period of time in the role you need to work out why. Why is it a horror movie? As with the movie you need to spend the first “chapter” discovering the motivation, make assumptions, which you are willing to change by testing them. Try to evaluate assumptions, you need to know what is driving the good guys and don’t forget the bad guys.
Is the project in need of turnaround because of the characters or is it because it is impossible to succeed? The hardest task is to stop the train and tell everyone to get off, but, if the project is in need of turnaround because it could never deliver then you need to be brave and admit that. The quicker you can do this the more likely you will still feature in the sequel movie!
A further quick win is defining the timescale. Turnaround initially needs a short sharp shock, and it is hard to define which fix to make first. Full turnaround normally takes a sequel or two to achieve! With this in mind ensure that the quick win is one that the customer will see and benefit from, not the most popular solution within the current team.
Like a movie series the turnaround takes participant investment, turnaround Charlie needs to get in quick and create a relationship at every possible stakeholder level. Engage the audience. There is no better tool for Charlie than customers exclaiming that “things” are better now!
Take control from every perspective, and answer the question, “Do you like scary movies?” Of course you do, or you wouldn’t be doing this job!
But, bring your team a long with you; what is the one thing that they think turns the delivery into the horror movie? Once you know that, agree how the team will work to turn it around, and go at the delivery of it as a team, empower them to do this as a priority, but always link it back to the customer needs and deliverables as clearly as possible. The customer needs to see that the team is working on the turnaround as one and has it as its priority.
The end credits of the turn around though, unfortunately, don’t always ring true, and if you have agreed to go in and do this consciously then you need to be aware of this from the beginning. If a project has needed a turnaround then there will be some residual customer neglect, even the best turnaround can not delete the impression the customer had before turnaround started.
This has an impact on the sequel which everyone needs to understand. The customer starts with perceptions of the actors involved and the story line about to be told, which means that the new project is in turnaround from the beginning and therefore needs a new storyline to tell that attracts the customer back to the delivery and benefit and builds confidence in the outcome.
So, once you have done turnaround you will never stop making the sequel, the key is to achieve what very few film makers have achieved, making each sequel better than the last…
Sequels I think are better than the original include; The original Star Wars sequels (TESB, RotJ), Aliens, The Darknight, The Godfather 2, Toy Story 2, Before Sunset and if you hadn’t guessed from this the Scream Sequels.