The government's My Health Record (MHR) system promises to bring together a bunch of different healthcare data so that a trip to the hospital or doctor won't require lots of information being recorded over and over again.
It should reduce some costs as healthcare providers can access pathology and other analyses without repeating tests and will simplify how we deal with some agencies. But it's also being implemented in a pretty ham-fisted way, with everyone's consent assumed unless they opt out. I've been looking at the system. Here's what I'll be doing.
July 16 marks the start of the three-month period in which Australians can opt-out of the government's My Health Record. Planned as an "online summary of your health information" that "can be accessed at any time by you and your healthcare providers", there are no guarantees about how your data will be used by said providers. Here's what you need to know about MHR and how to opt-out if privacy is your main concern.
What is MHR?
The Australian Digital Health Agency says the MHR is an online summary of key health information. It includes things like allergies, medications you're on, medical conditions you have and pathology information such as blood test results.
The idea is that by having all this information in one place, when you seek access to health care, the professional you're dealing with doesn't have to ask you a bunch of questions as they can look at the data in a central system. That can be very handy if you're taken in for emergency care and can't provide the information yourself.
The information can be added to your MHR by healthcare professionals and you can add important information action such as emergency contacts as well. Up to two years of your Medicare history may also be added to the MHR as well as organ and tissue donation decisions and other data.
The thing to note is that this isn't a clinical record. It's not like reading a hospital chart and seeing lots of detailed information. It's a summary. As far as I can tell, it provides a documentary record of the sorts of things you'd be asked during triage when you present to a doctor or at a hospital and they want to know about your medical history.
Who Has Access To The Data?
The Conversation, in an article making the case for opting out, says:
MHR’s access-logging system does not track which individuals are accessing records, only institutions, which means you won’t be able to tell who has seen it.
This worries me. While the information is intended to be a summary, it will contain some information that might be considered sensitive. And while I'm OK with my doctor knowing certain things, I'm not so sure I need my personal information to be accessed by someone who I have not specifically given my consent to.
This is the heart, I think, of the matter when it comes with whether or not to opt out of the MHR system.
There's Consent, And There's Informed Consent
Consent is almost always presumed to be something we actively give to someone. In the case of the MHR, consent is assumed unless we opt out. And I have a really big issue with that. One might think the government is keen to bolster the credibility of a new system by ensuring the number of people in it is as high as possible.
One way to do that is to automatically enrol everyone into it and say that if you don't want to be a part of it, that you need to take steps to ensure your personal information, which I think many people see as highly sensitive, is not included or is removed. I think the approach taken by the government is poor. The government has spent hundreds of millions of dollars on a cybersecurity strategy, imploring us to be careful about how we store and share data, only to take the decision about healthcare information away from us.
Rather than give consent, we have to withdraw it.
I have many friends and family who work in the healthcare sector. One thing that is clear to me is that there is a very broad continuum in technology expertise and understanding in healthcare. While some organisations will have solid controls in front of who can access specific data, there are others with far less stringent controls.
Even if I give consent to a healthcare provider, I don't really know who I've given my consent to. When your MHR is accessed, there's no way to be certain of who has accessed it. All you'll know is what organisation accessed it.
The My Health Record (MHR) opt-out period has begun, and you have until October 15 to decide whether or not to be part of the scheme. Unless you take action to remove yourself from the My Health Record (MHR) system, the federal government will make a digital copy of your medical record, store it centrally, and, as the default, provide numerous people with access to it.
If you don’t opt out during this period and later choose to cancel your record, you will no longer be able to access that record but the government will continue to store it until 30 years after your death. You will need to trust that it will not be breached.
What Are The Real Risks?
Much has been said about the risk of hackers attacking the MHR system and gaining access to a vast treasure trove of information. That is a risk but I don't think its the biggest one we need to worry about.
As I mentioned, there are the healthcare provider networks. Why bother hacking the government when your local GP is a much softer target? I think that's a more serious issue. And within those offices there's no way of ensuring you know who has actually accessed your record.
The government has said that the data will be used, in an anonymised form by third parties and app developers. But there are risks that the data could be de-anonymised.
The main risks that I see rest with people. There have many instances where law enforcement agencies have accessed personal information without adequate oversight or for good reasons. For example, if a disgruntled partner wanted to track down someone they could easily leverage emergency contact details of someone they know or even look at patterns for when pathology tests were taken to anticipate where that person might be.
What Will I Be Doing?
There are some clear benefits to the MHR system. Having a central, easy to access health record does have the potential to simplify how I deal with healthcare providers. It means, for the first time, that I have some control over my health records and can create a consolidated set of health information that can be used in my care.
While the government seems to have considered the system from the healthcare perspective, it has done a poor job of considering the most important people in the system - us.
While an opt-in system would have been harder to implement and required more effort, it would have also been a great opportunity to sell the benefits without the baggage that comes with the scheme being effectively mandatory unless you take steps to opt out. In effect, they have taken my choice for informed consent to share my data away.
A big part of me wants to tell the government to shove it just because of the way they have implemented the MHR. But me real concerns are the lack of clarity about exactly who (not the organisations but actual humans) can access the MHR and the poor security around the systems that could access the data.
That's why I'll be opting out.