Digital Transformation in Health
While ‘e-health’ can encompass many things, centralised healthcare records is a key component at the government level. Where is Australia at with centralised healthcare records, what are the pros and cons, and what’s the rest of the world doing?
There are many aspects to digital transformation in the healthcare sector — too many to cover in one blog. The two most common things discussed as part of ‘e-health’ are centralised healthcare records and technology-enabled consultations (often simply referred to as telehealth). Of course, a much broader definition would take us down the path of looking at any medical research or medical practices that involve ground-breaking technology. A massive area! To narrow our focus, in this blog we’re going to look at centralised healthcare records.
Centralised healthcare records in Australia
A recent IDM article on My Health Record provides a thorough breakdown of where we’re at now, and where we’ve come from, in terms of centralised health records. The current system in Australia is called My Health Record (MyHR) and unlike the old system, it’s being trialled as an opt-out initiative. (An investigation found one of the primary reasons the old system didn’t take off was lack of buy-in from both healthcare professionals and consumers. This was despite the fact that most consumers do want centralised records.)
The opt-out version has been trialled in parts of NSW and QLD, with nearly one million new users added and only 1.9% opting out.
Stats from March this year put MyHR’s registrations at around 4.6 million patients and 10,000 healthcare providers, with close to 650,000 shared health summaries having been uploaded.
MyHR lets patients and healthcare providers upload and access centralised information for each patient. It is designed to act as a complete healthcare record for citizens, a central depository of their vital health information.
The major benefit is obvious — a centralised place where each patient's medical records are stored. If implemented well, it would save consumers lots of time (no need to fill out forms detailing their past procedures, medications, etc.) and also help during emergencies or if patients are unable to remember their medical history.
For healthcare providers, it could act as one source of truth, again with obvious benefits. For example, if a patient is about to have a general anaesthetic and the anaesthetist can see what anti-nausea medication a patient was given the last time they had a general, the anaesthetist instantly knows what works. This provides benefits to both the patient and the doctor. Or if the patient had an adverse reaction to something last time, it’s clear for the attending doctor to see, notated in the patient’s MyHR.
One of the biggest problems (raised in the IDM article) is that under the current model consumers will have full control over their records. That means if they want to delete a record in their MyHR, for whatever reason, they can — something the Australian Medical Association (AMA) is concerned about. So while MyHR could act as one source of truth, currently it doesn’t. It’s effectively subject to patient censorship.
The Australian Digital Health Agency
MyHR is run by the Australian Digital Health Agency, which took over Australia’s digital health in July 2016.
The Agency is charged with: “improving health outcomes for Australians through the delivery of digital health services and systems” (taken from the 2016-2017 Corporate Plan). MyHR is only one of its focal areas.
What’s the rest of the world doing?
Many countries around the world are also focusing on a centralised healthcare records — while other countries are not pursuing the centralised model due to privacy concerns.
In the UK, the National Health Service (NHS) has the Summary Care Record (SCR) as a limited centralised health record. When a patient formally registers with a GP practice, an SCR is automatically set up for them, unless they choose to opt-out. The SCR can be accessed by a patient’s healthcare providers (with permission) or during an emergency (when it’s considered to be in the patient’s best interests). The SCR is not a FULL medical record, rather it contains the essential information: current medication, allergies, and any past reactions to medications.
The US has developed its Nationwide Interoperability Roadmap, which proposes what they call a ‘learning health system’ and includes providers having the ability to “securely access and use health information from different sources…” It’s early days, but they seem to be on the road to centralised health records.
Estonia (remember Estonia is the leader in e-voting), already has its Electronic Health Record up and running; in fact it was introduced in 2008. Like the proposed Aussie system, the Estonian system provides centralised health records (although rather than being a centralised repository, it actually retrieves data from various providers, who may be using different systems). It gives healthcare professionals access to a patient’s medical records and results, including test results, X-rays, blood type, allergies, recent treatments and current medication.
Finally, closer to home New Zealand is also working on its own centralised system as part of its Digital Health 2020. It’s also in the early days, with the business case for the electronic health record due to be completed in the middle of this year.
Salsa Digital’s take
Health, in general, is a growing area for digital transformation. Given that it’s largely controlled by governments in most countries, that makes it an important area for digital transformation in government (DTIG). Like many other areas of DTIG (e.g. open data and e-voting), concern over privacy is often one of the key problems raised by society. It’s most likely that people’s opinion on MyHR will largely align with other areas — if people are concerned about privacy in our digital era, they’re probably going to be concerned about e-voting, open data, centralised health records, etc. It seems, at the moment at least, that people have to weigh up convenience and many other ‘greater good’ benefits against privacy concerns. In the case of MyHR, we have the additional issue in the current model of people being able to control their record (e.g. delete some records), which raises the important issue of the record’s reliability.
Once more, we find ourselves looking to Estonia as the leaders in a digital society. And if we follow their model, MyHR would act as a true and complete source of information for healthcare professionals. It seems to us this model is far more logical, and will ensure buy-in from doctors, who will ultimately be the ones making decisions based on information in MyHR. An important consideration in this important aspect of DTIG.