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Comment by msamwald | Hacker News Reader

It seems overall okay if you accept the premises that A) A centralized health record system can do substantial good by improving effectiveness and transparency of healthcare processes, and enabling medical progress through data re-use. B) Doctors won't lift a finger to do extra work if they have no selfish incentive for doing so.

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I'm all for donating health record information for the greater good to universities and researches to analyse and progress science and knowledge etc.

However, this government has no idea what is doing, the framework is poor, oversight is poor, without a doubt the implementation will be poor and its pulling a "swift on" on the public.

Lets not forget, this is a government that couldn't handle an IT system thad a few million people filling out a census form online.

It's really not that much money as an incentive. Doctors won't do it unless they believe it's a good thing.

Source: I'm an Australian doctor.

What are you doing, and what is your professional organisation (the AMA) doing, to counter long wait times for doctors visits?

I dunno man. I'm not a member of the AMA and I've always run pretty well on time unless I get bowled a bouncer.

I used to get frustrated with doctors running late, until I became one. It's the patients that come before you that largely determine how late the doctor is. If someone might be having an MI but only came in to discuss "reflux" the doctor is going to run behind.

What would you do about it?

Though, I'm not sure why you're asking me this since it has nothing to do with this thread.

So much entitlement in this post

Never the less, I’ll bite because this is a topic of interest to me. What kind of wait times are you talking about?

Emergency room? Public non-emergent and elective surgery? Private practice specialists? Bulk billing or private billing general practice?

You can have most stuff in Australian healthcare good, cheap or fast. Pick two.

Are you opting out? I keep remembering that AHPRA applied for warrantless access to metadata, and thinking that perhaps I might be better without a record in case the wideranging provisions for access by other agencies get deployed too liberally.

This is an interesting question and I'm still pondering on the implications.

I am generally in favour of people signing up for this (or not opting out as the case is now) because it very well may save their life one day. Emergency departments especially will benefit in being able to look up details on the patient. It's amazing how little most people know about their own health history.

I suppose it may also help me if I end up in ED unconscious and have some health condition they would need to know about. That situation is unlikely, and even if it did happen they could call my wife, who is also a doctor, and she'd also know what's important in my history.

So for me, there's very little benefit I see. Couple that with my distrust of the Australian Government's ability to outsource their critical infrastructure to American companies (facepalm) and have it actually work (facepalm), I'm leaning towards opting out.

For patients in general, I think the benefit to them will outweigh the risk of their personal data being stolen.

If only our government wasn't so inept with IT (we have plenty of good developers here. Why not make our own teams to build things?) I would be able to recommend this health initiative to everyone.

Edit: autocorrect fail

My Health Tecird is not going to help you in the ER in any way shape or form. At best it will be useless at worst it will be wrong.

It is not a complete record, and you will only be shown a summary of medical history not a clinically useful record. In addition the patient may have sought opinions from multiple doctors, any of whom may not use MHR.

The risk to most people who don’t actually need complex diagnoses will be endless calls from lawyers and insurance sales along with a web experience modified to keep them worried about that visit to the doctor about a possible STI last Valentine’s day.

> My Health Tecird is not going to help you in the ER in any way shape or form.

So you've been a doctor working in ED?

> will only be shown a summary of medical history not a clinically useful record

I'm going to guess you're not a doctor, since then you'd know how much more useful a medical summary is than no information at all.

Hell, if I have NOTHING BUT the patient's medication list, I can usually make a pretty good guess about their medical history. If the health record contained only patients' medications it would prevent an enormous amount of morbidity and mortality, as well as saving time for doctors, nurses and pharmacists all around the country.

Sure, it might not be complete, but it's far more likely to be complete than patients' memory of what meds they take for which disease, in which doses and with which frequency.

> If only our government wasn't so inept with IT (we have plenty of good developers here. Why not make our own teams to build things?) I would be able to recommend this health initiative to everyone.

It's not the government IT I'm worried about so much, it's all the local doctors that get access to medical records and have inept IT security. Previously if there was a breach at a practice it was only the data of the patients of that practice, now if there is a breach at a practice they can potentially access the medical records anyone in the country.

The attack surface is huge and largely unguarded and now there is a massive reward for breaching it.

> I suppose it may also help me if I end up in ED unconscious and have some health condition they would need to know about.

This can be solved with a card in your wallet, which they have to go into to find which health records to lookup anyway.

You have a really good point about local practice security. I agree.

I disagree about the card in wallet thing. Patients won't keep it updated. Also, most patients won't have it on them. And for many patients it would have to be a book, rather than a card. See my other comment talking about medications.

PEXA have pointed this out in great expensive detail with conveyancers. Every week there's a $300k theft of house sale settlements, always because some hacker has gained control of the settlement party's account.

I doubt medical practices are as bad as backyard shops like conveyancers but you are spot on, the incentives are definitely there

C) the database never gets hacked, or leaked, or otherwise exfiltrated

Even if there is a risk of this. It might be a risk worth taking.

Edit: I don't know the specifics, but I sometimes wonder what good stats on more health records could do for future treatments.

I wouldn’t intentionally place my health records out of my own control, because I have significant risk to my life if those records become public. Having certain illnesses and medical history is inherently political in 2018 - being trans can result in violence against you, talking to your doctor about STIs - even just prevention - can get you kicked out of your home, having medicated/treated schizophrenia will result in losing job/housing/etc opportunities.

This isn’t going to change even if all those records become public in some way.

But you also have a significant risk to your life if your doctor can't get to them and orders the wrong treatment. The risk of that happening to you is actually significantly higher than dying from a lot of pretty common illnesses.

  But you also have a significant risk to your life if your
  doctor can't get to them and orders the wrong treatment.

Don't you think I'm in a better position to make that decision than a central government bureaucrat, given that I have my medical records and an incentive to protect my own privacy, and he has neither?

It's not good public policy for millions of people to make individual decisions about this. It's expensive for the healthcare system when there are a million different ways for it to access your data; some people bring in papers, some papers are on the other side of the country, some people have a USB stick, oh granny lost hers in a fire here's a photocopy from 10 years ago. It's just much more effective to manage these things at scale.

You have incentive to product your privacy, but you don't have the means. Are you going to bolt a fire-proof safe to your basement floor and keep a backup in a storage unit? Are you going to store them on a disconnected harddrive and create backups every 3-6-12 months? Can we expect every Australian to do this? Can we expect everyone to want to spend hundreds of dollars to make this happen?

So in my country, records are kept by the individual clinics, where I have GDPR rights over them and there isn’t a direct mechanism by which anybody but the clinic can access them. If I move clinic, there’s a process by which those records get moved with my consent.

Yep, works like this in Canada. The problem is that each clinic implements a different record system, so someone needs to undergo effort to translate them when you switch systems.

Also, I worked with OSCAR, one of Canada's biggest EMRs. It is written by a bunch of academics at a local university and is individually deployed on under-the-desk computers at clinics. It is full of security holes, the whole process of managing this system is.

I get why you want rights over the medical records. You can still have those on a centralized system. Google and facebook are centralized and you have rights over them (in some jurisdictions anyways).

Your province pretty much gets and retains your records because it's paying the bills.

I'm not saying I like the Australian take on this but I do think a central database for medical records has the potential to prevent medical treatment mistakes by a couple percent. That's thousands of people saved. At that point, I think it's something we really should discuss as a society because it would have a profound effect on the economy and public health. I don't think the idea is fundamentally flawed, I think that just like the justice system incentivzes people with a monopoly on violence to protect you we can legislate in a way that public health servants would be incentivized to look after your interests.

Sure, and I’m participating in that discussion right now - for me, it has a high risk of seriously negatively affecting me. There’s other bits of law that I oppose for similar reasons - there’s an opportunity to do a bit better/be a bit more efficient, but at the obvious cost of seriously harming people. I think that many people don’t recognise the downsides to centralised databases vs more efficient records transfer systems etc.

Sure, if your point is that centralized government databases are inherently bad because the government could use them, I can't argue against that because you simply will not risk whatever they could do however low that risk is (if it's even quantifiable).

Unless I’m unconscious, I can give my doctor permission to access my medical history from where it’s kept under my control, and give them a quick run-down in the meantime if necessary.

I feel that I should have a right to choose between the risk of death when both myself and my emergency contact are unable to provide medical information to a doctor, and the risk of my medical history becoming publicly available - or even just available to the Government. Forcing the latter risk on me is, imho, unethical.

And it would be much simpler if all you had to do was give them that authorization and they could retrieve your medical records in an instant, in the correct format for them to work quickly.

If they have to order your medical journal from a completely separate jurisdiction, in a completely different format, and then import it that would take longer. If you require specialist care which is not available in your area this is an issue that comes up again and again.

Not saying a centralized system would fix all the problems, or be perfect, but if it improves 1% of cases that's potentially thousands of people saved every year. That's a huge return for a very minor improvement.

All at the low, low risk of creating e.g. a centralised Government database of trans people, or people with HIV, or whatever the next big scare is.

Yes, not saying it's perfect or couldn't be used for evil, just like the FBI isn't perfect and can be used for evil. We have to weigh the options and legislate in a way that mitigates the ways it can be used for bad things.

Again, just a few percent in efficiency could mean thousands upon thousands of lives saved. I'm sure a lot of HIV positive people who were mistreated would've loved that.

FWIW, this isn't a "could be" used for evil, it's a "will be" - there's no particular reason why Government databases of people with certain characteristics have been used to oppress and murder people in the past, but won't in the future. I'm young enough, and there's enough public opposition to people with my medical history, that there's a very high chance that my country decides that I no longer deserve protection of my human rights at some point in the next century at the very least - so I'd like to make it a little bit harder for them to figure it out.

I agree. In the US, the equivalence of a packed Boeing 747 of people die every day because of medical mistakes. It's the third leading cause of death. If you could reduce that number by 1% through this policy, that would mean thousands of people saved every year.

In my opinion, the risk-reward analysis is clearly in favor of a centralized system.

That’s actually a Grady point. Thanks for raising it.

... or privatised and all the data used commercially

You can make the A) argument about any centralised database system. There is a down side and as always the challenge is finding the balance: the problems being solved Vs problems being added.

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