Abandoned by Government eHealth — Heart Patient Turns to Apple
By Allan Johnson and Marie Johnson
In the late 1980’s, Allan Johnson — an RAAF aeronautical engineer, was doing research into expert systems, the forerunner of artificial intelligence. Some 30 years later as a heart patient, his health is becoming increasingly dependent on AI.
Marie Johnson is a global commentator on digital disruption and AI. She is also the co-creator of Nadia — an AI based digital human — and sees application for this innovation beyond disability including cardiac health applications.This is our story of being abandoned by all levels of Australian governments’ bureaucratic approach to ehealth, and why we turned to Apple.
The Australian promise of ehealth began in the early 1990s, and after almost 30 years and billions of tax payer dollars spent, yet to be delivered. And after everyone has been busy for all these years in ehealth bureaucracies and committees, Apple has quietly unleashed the ehealthcare revolution.
I am a heart patient and cardiac health evangelist and mentor. I am also a survivor of three very serious heart surgeries.
In March 2006, I had an emergency 5-way bypass in Seattle, USA.
In November 2006, due to problems with the bypass grafts, I had 4 stents on return to Canberra, Australia.
In August 2017, I had a further 3-way bypass in Canberra.
In many ways, Australia is still far behind my experience in the US eleven years ago. Back then, in 2006, I took for granted the virtually seamless electronic integration between my health fund, hospital, surgeons, GP, pharmacist and dispensing delivery systems. This was my first major interaction with a health system anywhere as a consumer and, as an engineer with global systems integration experience, I was mightily impressed with what they had achieved.
On returning to Australia, this holistic picture shattered like a mirror breaking, and maintaining information about my heart health since then has been both difficult and stressful.
There is little effective connectivity between my medical, allied health and community support providers. For years, I have had to manage my own health information, manually book appointments and hand carry referrals and discharge summaries to them, and constantly handwrite information on forms. In recent years, I have developed dystonia, a neurological disability which affects my fine motor skills and so filling in forms by hand is now impossible.
Worse still, much of the health information I trusted my health providers to manage in their manual filing systems has now been lost. Almost all of them failed to transfer my historical information into their new Patient Management Systems, presumably to save time or database space.
I am a highly-educated engineer who has worked across health systems in Australia and overseas and even I despaired at times of understanding what was happening and what I needed to do.
Before readers get too excited and say, well that’s what government ehealth is intended to sort out, let me tell a story about my day to day and what I can do with Apple now, and why I think government ehealth has been a three-decades long waste of taxpayers’ (and my) money, and its failure a significant risk to my health.
These are just a few of the formerly manual activities that I can now do in the Apple health ecosystem using my iPhone and Apple Watch that make a massive difference to my heart health and life:
- Continuously record all my activity and sleep online, along with my heart rate and other parameters and get alarms if my heart rate goes too high.
- Wirelessly record my blood pressure that I have taken at home.
- See all my energy in and energy out in the one place and on the one screen, together with summaries and trends of my activity, diet and health.
- Manage ALL of my medications via the free BUPA MedAdvisor app. I can see how many scripts I have left, when my tablets will run out, order refills, find information about my meds and set reminders to take my meds.
- Manage my diet via the EasyDietDiary app. My dietitian can see in real time if I’m getting enough macro and micronutrients and let me know what dietary changes I should make.
- See the results of MRI and other scans on my iPhone and iPad.
- Claim for treatments and medications from my Health Fund with a photo of a receipt.
- Search for free time in doctors’ schedules and make (and cancel) my own appointments for times that suit me.
- Receive reminders to breathe, stand and move, all of which reduce cardiac risk.
- Listen to guided meditation to help me relax or rainstorms to help me sleep.
- My family can find me if they are worried about me — using THEIR iPhones and Location Sharing.
- Call for a paramedic without touching my phone — using Siri — and they can see my detailed medical information and medications when they arrive. They can also see what my blood pressure was that morning, what my heart rate has been doing, what I have eaten, and what I have been doing.
- And very soon, I will be able to use Kardia Band, the first FDA-cleared medical accessory for the Apple Watch. The EKG fits into the watch’s band and can record clinical-grade EKGs in 30 seconds and show the results on the watch’s screen.
I have already mentioned that I have dystonia and that this makes it difficult for me to write and type. Apple’s incredible accessibility features mean that I can use these applications despite my disability.
One surgically treated heart event in a lifetime is enough, three is just too much. Especially if you are young, fit and want to live a normal life! The picture opposite is of me and Marie having just completed the 2011 Melbourne Marathon, a full 42 km — after the first bypass and after the stents.
For a heart patient, a marathon is regarded as a very high risk activity. I am not a doctor but I am a statistician, and I believe that much of the advice and precautions given to heart patients in general have been based on the ‘average’ heart patient, possibly a sedentary smoker of seventy years of age! I prepared for the marathon over several years in consultation with my GPs, cardiologist and exercise specialist. I steadily progressed through 5km, 10km and half marathon events. I well understood my health and personal abilities, and worked within their constraints. I have used this same approach to participate in CrossFit and weightlifting, and to qualify as a Schwinn cycle instructor.
I believe that with the dynamic and intelligent support of the Apple ecosystem many more cardiac patients will in future be able to safely challenge themselves in different ways as I have done. They will still have to work with their medical specialists, but with the advantage of much richer and real-time information about their health and exercise tolerance.
It is too easy for a heart patient to become defined by their disease, no matter how young they are. There is no cure, only surgical intervention or other treatment followed by a lifetime commitment to the four pillars of medication, diet, exercise, and meditation. In fact, all four are regarded as essential to the prevention and treatment of many chronic disease. I can already monitor and record all four using Apple; the forecast government ehealth solution does not provide this capability.
Thankfully, I can do now by virtue of the Apple ecosystem far more than the limited Australian Government eHealth strategy envisages for the year 2022. Just imagine what else Apple will have in five years’ time.
So, why Apple? For me it’s all down to TRUST, a trust based on my personal experience.
I have had multiple hospital emergency admissions and treatments by ambulance paramedics, and I now show my iPhone to paramedics or hospital staff for an immediate, time sensitive and very complete picture. First responders and ER staff are blown away by what they see and how much contextual information is immediately presented. Trust at the very point in time when you need it most, and trust all day every day.
Trust and the consumer experience are inseparable — and whilst Apple well understands this, governments don’t, and many other providers of phones, devices and wearables also ignore this or underestimate this.
I have previously invested thousands of dollars in other phones, wearables and associated devices from Apple’s competitors only to see them physically break, technically fail, run out of support or force me to buy the next expensive hardware version just to get a few new features. My Apple Watch Series 2 and iPhone 6s+ are now several versions and years old but continue to add health features for free with just software upgrades, and connectivity between the third-party apps I use and Apple Health continues to grow — again at no cost to me.
My trust in the Apple ecosystem and their value proposition for me is very strong.
I don’t trust government systems that are difficult to use, record only basic and incomplete static data and totally disconnected from every other tool I use to manage my health and health data. The government proposed system also fails me when I travel overseas for business or leisure, as do many other Australians. Paramedics and hospitals overseas won’t themselves be able to login to access my government health record. On the other hand, they will be already familiar with my Apple health data that I carry with me because it is universal!
The government ehealth approach assumes a model of event driven patient interaction with the health system i.e. I go to the doctor for a “check-up”, or to hospital because I have chest pain. This staccato model relies on and generates point in time data that is fragmented and lacks intelligence, context and awareness. Absent from the proposed government ehealth model is the data generated between visits that is far more expansive and contextual than any point in time data generated from a 15-minute GP visit.
In contrast, the rich Apple ecosystem dynamically supports me all day every day, using artificial intelligence and drawing on contextual data.
Millions of Australians directly experience debilitating chronic illness or disability, and further millions of family members and carers are impacted and share their anguish and daily struggle. Make no mistake, for those of us who have been affected this is not an academic or policy argument about government versus private management of ehealth. It is a matter of strong emotion as evidenced in my own case by this video interview made by Fitness First when they nominated me for an award in 2009, three years after my first bypass.
I now see these emotions every six weeks — confusion, anxiety, fear — when I speak as a past cardiac rehab ‘consumer’ to each new group of patients. And I’m feeling them and seeing them up close as I go through cardiac rehab again.
Our wonderful and dedicated GPs, nurses and allied health professionals, dieticians, psychologists, pharmacists and exercise physiologists will continue to provide our care. That is their role and they do it with remarkable compassion, dedication and expertise. What is rapidly changing is that we can provide them with a wealth of additional information about us and our health; information that we generate and control through the Apple ehealth ecosystem.
Imagine what this means for our future care compared to the static and incomplete snapshot our governments offer to deliver in the future that will still not be at the level offered to me by the US health system 11 years ago!
With Apple today, I am being liberated from the threats and constraints of my chronic health conditions.
From Marie: Hope and Exponential Change
We felt it was important to tell Allan’s personal story to illustrate the squandered promise and deep despair when a multi-billion dollar centralist bureaucratic approach lurches out of control for decades.
Australia’s approach to ehealth is anchored in the past three decades, with a vision that struggles to excite with a vague hope that in five years, the ehealth record (now called My Health Record) might benefit consumers. It won’t; we can already do much more now in Apple than government promises to deliver in the future.
The first problem is that health — or ehealth — is not about a “record”, which is an archaic notion of a static incomplete repository of data that lacks intelligence and the human experience context.
This is a model that assumes periodic contact between a patient and one of the few health providers who might actually use the ehealth record. In 2016, it was reported that only 300 of the 28,000 GP medical businesses were using the government’s eHealth record system.
A model that does not accommodate the rich ecosystem of dynamic data and intelligence generated all day every day — a richness of data and intelligence that is essential to Allan’s health.
So the backward-looking approach of a “record” is a flawed notion that has seriously compromised the value proposition for consumers.
And it seems that the value proposition has always been contentious and confused, as illustrated by the 2011 report from the Parliamentary Library “The ehealth revolution — easier said than done.”
This Parliamentary Library report referenced comments by Dr David More who was described as “a strident critic of Australia’s eHealth directions for many years”. Whilst his comments were made 6 years ago, the fundamental point of a confused value proposition persist.
“A system designed for use by clinical professionals is an utterly different beast to the system that might be designed to help a consumer keep track of their…basic health information and the health story…
The bottom line is that creating a system to be used by consumers and clinicians is just a fundamental nonsense. Any system targeting both groups will satisfy neither, inevitably.”
Administrative efficiency is not a value proposition for consumers. Governments tend to both vague-up and exaggerate this point. In any case, administrative efficiency is quickly eaten up by switching costs, as not all players in a system being shaken by disruption will equally benefit or even survive — it is not a zero-sum game.
So anachronistic is the government approach to ehealth that in most jurisdictions, new parents are issued with hardcopy and (believe it or not) carbon paper filled “blue books”, baby health records. A bit like car service manuals. Babies, who by the age of 18 months, know their way around an iPhone will be lumbered with these handwritten “blue books” for 18 years.
The reckoning from three decades of short-termism and lack of foresight has squandered opportunities for adaptation. Such adaptation and innovation does not come from committees with neat terms of reference but from unexpected and at times uncomfortable areas. For example, people with disability actually drove the introduction of SMS into Australia, accelerated by the intervention of the Human Rights Commission so that people with disability and their families could communicate with one another as mobile technology was becoming mainstream.
Similarly, Apple — effectively a software, hardware and design company — is quietly unleashing the ehealth revolution. And we are the beneficiaries of it.
With a culture and legacy of design innovation, Apple implicitly recognises that its products and solutions apply to everyone. That is, Allan is not just a “heart patient” — he is a fitness enthusiast, a person with a disability, an engineer using common solutions across this spectrum of human experience. Similarly, Apple recognises that it is not designing for an American diabetic patient or an Australian heart patient — but a universal design that applies to everyone. Universal design unlocks the maximum potential to learn about disease and finding better treatments and cures. Perhaps universal design applied to the “Blue Books” could result in a Blue Book app available globally to new parents, regardless of their language and literacy — imagine the insights that would bring.
From a data analytics perspective, Apple is poised as a hub for health data and as recently reported in HealthcareDive “Apple’s future in healthcare: What we know (and can guess)” is moving into conducting clinical trials.
This deeply enriches the Apple ehealth ecosystem and identifies strategic opportunities based on social determinants of health not previously discernible.
Apple’s ability to apply artificial intelligence and “intents” analysis to vast amounts of consumer and aggregate health data and meta-data from around the world will forever shift the focus of healthcare beyond treatment and prevention, to prediction. The acceleration to prediction has the global potential to save governments and health funds many billions of dollars. This flipping of the current model will unleash positive change of an exponential order.
The Apple ehealth near-future that we see for Allan, is an intelligent and predictive services ecosystem delivering continuous personalised micro interventions and intelligent empathetic interactions at any time.
This might mean for example, that even before Allan is aware of an issue, a trigger or anomalous reading activates a service. Lucien Engelen, LinkedIn Influencer and Director of Reshape Center for Health(care) Innovation in the Netherlands powerfully visualised such a scenario at the 2017 Singularity University Exponential Medicine Conference.
Lucien’s scenario “You will have a cardiac arrest in 5 minutes from now, sir” brought home to me at a very personal level, the potential of predictive and pre-emptive services. I am the one who has had to call the ambulance for Allan on many occasions. Flipping the model, would have the ambulance turning up even before there is a chest pain or symptom, saving unnecessary suffering and cost to the system.
Could this lead to Apple evolving into a health services provider, one to even rival the health funds? And how will the health insurance industry respond? Or will it even be able to?
At the Annual 2017 Committee for the Economic Development of Australia (CEDA) speech, the former Australian Prime Minister Paul Keating made an impassioned call for imagination so that Australia can comprehend and absorb the new world being brought about by digital technologies and the application of artificial intelligence:
“Changes on a canvas of this kind are not going to drop from any department. You will not find them falling from a Treasury printer. Because of their essence, they require imagination…
These technologies dramatically change those trajectories. From now on the changes will be so rapid, so exponential, we will have difficulty, even in our mind’s eye, at comprehending their scale and implications — let alone planning for them.
All the more reason our imagination must be leaping, not being at all relaxed and comfortable.”
Visionaries such as Engelen and Keating describe an exponential change, the new and rapidly changing dynamics and economics of relationships driven by digital technologies touching every individual consumer, community and industry across the globe.
This is digital disruption in its truest form — not a top-down centralist reactive government bureaucratic approach, but driven by newly empowered consumers. For the first time in history, the democratisation of health information empowers and liberates the chronically ill, the disabled, and the disadvantaged.
Having been abandoned we now see hope and opportunity, but not as envisaged by government.
Al (Allan) Johnson
Al is a Director of the Centre for Digital Business, with a special focus on health and fitness and the role that artificial intelligence and other digital technologies can play in improving these for everyday citizens. Al is a qualified personal trainer, registered with Fitness Australia, and a Schwinn Cycle Instructor. He has also trained as a Heartmoves Leader, body building competition coach and as a Kinetic Link Training instructor. Al does volunteer work with cardiac rehabilitation, and mentors other heart patients.
Al no longer has a LinkedIn account because he doesn’t want a job! Briefly, he is a professional engineer who served in the Royal Australian Air Force (RAAF) and afterwards built a global career as a management consultant and ERP software specialist including in the health and hospital sectors in Australia and Asia.
Marie is the Managing Director and Chief Digital Officer of the Centre for Digital Business, a sought after global commentator on digital disruption, artificial intelligence and design innovation, based on decades of major digital transformation delivery experience.
Most recently, Marie conceived and led a global co-design and co-creation effort with people with disability to deliver “Nadia” the first cognitive intelligent human realistic avatar (digital human) for service delivery.
Marie believes that digital innovation through universal co-design amplifies all human potential, empowering and liberating the disadvantaged, disabled and chronically ill.