This appeared a couple of days ago on Reddit.
Opted out of my health record last year but its there in 'your services' when I log into mygov.
It asks my for medicare details and recent doctor visits to sign in to access "my" health record. Not going to do that incase it reactivates or something. Can anyone confirm that this is normal for someone who opted out?Here is the link to the conversation:
https://www.reddit.com/r/australia/comments/dvzx6i/opted_out_of_my_health_record_last_year_but_its/
Typical comments under this header say things like:
“I also opted out, and I also have it showing up in MyGov the same as you. My partner opted out, and much later in the window than I did. Apparently she doesn't have My Health Record showing in her MyGov services (will confirm). Fuck knows what happened but if the cunts have created a record for me and are adding information to it, I won't be happy.”
And
“I also opted out and it shows up for me too, I'd been wondering the same thing.”
And
“I opted out online. I then rang to check that my opt out had been successful and they confirmed it. I haven’t been to a doctor since I opted out and yet...there it is on the MyGov site again. I hate this government.”
And
“If you do have a record, permanently deleting it is straight-forward (now that the legislation has been updated to be less mind-bogglingly stupid) and can be done through myGov. If you're really concerned you can just call them and ask (you'll need your Medicare details).
I can confirm I had the service appear in myGov after I opted out. As a test, I actually proceeded with the identity verification and subsequent creation of my record. The language was pretty clear that I was 'registering' for a record and not simply linking it to myGov, indicating that my initial opt-out was successful. After creating the record, cancelling it was very easy, and I received a confirmation letter in the mail shortly afterwards. Hope this helps.”
Other entries in the thread suggest others have been more successful in getting rid on any apparent trace of a record. Have a read of the thread yourself to judge what you think may be going on.
This all makes one wonder are the users just confused or is there some accidental / planned reactivation going on which is not expected by the user / opted out myGov user.
The number of people who Tim K claimed had re-activated their record after opting out / deleting makes on wonder just what is going on.
Does anyone have any extra info / clues?
David.
19 comments:
Whatever is going on is a mystery. It could be that the system is working as it's supposed to but people are not understanding what's going on, or the system is stuffed - sometimes works, sometimes doesn't
What is interesting is the lack of knowledge that most of the posters have about myhr. Some know exactly what opt-out and "delete your record" means. Others are blissfully unaware that they may have a health record that is gathering data on them.
IMHO, it is clear that the government has failed miserably to inform and educate all Australians that it is their health record, that they are responsible for the content, its accuracy, its completeness and who can see it.
The astounding thing is that myhr requires active co-operation from people to be engaged in using it, otherwise it will just sit there either un-activated or is accumulating who knows what data because someone has activated it.
Care.data (Tim Kelsey's failed UK project) required no patient involvement - it automatically extracted data from GP systems. It wasn't a health record it was a health/medical surveillance system. It failed because of a lack of communication, education, engagement and explicit consent.
As a system, myhr is very different from care.data but the same mistakes and more have been made in Australia.
The "more" bit is that myhr needs to engage people otherwise data won't get into the system. The subreddit demonstrates that the government is fooling itself if it thinks there is any intrinsic value in myhr. The only certainty is that it is going to cost more and more money but the idea is fatally flawed.
Well, actually, the original idea was to connect up data repositories so existing data would be connected. That had some merit. The system as implemented did not deliver connected repositories.
The system as it exists is a pale shadow of what was promised and funded (I wonder if the ANAO managed to find the original business case. If they have and have read this blog and other material they will be fully aware of the gap) Now people start off with an empty myhr and copies of data has to be uploaded to a central repository. That is the fatal flaw.
Re-platforming means going back to start again and do something they couldn't do in the first place. ADHA can promise all they like but the ADHA doesn't have the expertise NEHTA had, and they failed.
ADHA can spout PR all they like but the system has no value - just cost and risk.
The government and ADHA have made the entire 'MyHR process' so confusing (either intentionally or through sheer incompetence) that it will most likely be impossible for the ANAO to make head or tail of the project. As a result their Audit will probably be quite inadequate and inconclusive.
The whole “delete” function is a replatformed “hide” function. Whereby previously you could not hard delete records but could make them not discoverable.
The MyHR is in the world of technical debt an out of control credit card.
The Australian Commission on Safety and Quality in Healthcare is promoting the Emergency Department Clinicians' Guide to My Health Record in ED which they and the ADHA have developed.
Something caught my eye in their description of a Shared Health Summary (SHS):
"What is it?
A Shared Health Summary is designed to be a succinct and current overview of a patient’s health history.
They are typically completed by a person’s General Practitioner, a Registered Nurse or an Aboriginal and Torres Strait Islander Health Practitioner. It may include past medical history information, allergies, an immunisation history and any previous adverse medication reactions.
Considerations
* Shared health summaries are presented sequentially and may have been authored by different clinicians.
* Because a shared health summary can be uploaded by different healthcare providers, you may choose to view multiple summaries to gain a more complete clinical picture."
This rather puzzled me because the myhealthrecord.gov.au website used to say that there could be one and only one SHS. When a new one was uploaded it replaced the old one.
the myhealthrecord.gov.au website says this about a SHS:
"Shared Health Summary
Represents a patient’s health status at a point in time. This will include known information in four key areas: patient’s medical conditions, medicines, allergies/adverse reactions and immunisations.
A patient has only one current Shared Health Summary at a time."
https://www.myhealthrecord.gov.au/shared-health-summaries-versus-event-summaries
Although nowhere on the website (that I can find) says that only the current SHS can be viewed, there are risks if old SHS are visible to healthcare providers.
A SHS can only be replaced, not edited. This means that a SHS that is incorrect will remain in the system - with the error(s).
My question is: how would an ED clinician be able to tell that there was a error in an old SHS?
There is nothing in the ED guide that suggests there may be incorrect data in an old SHS. Of course, there may be incorrect data in a current SHS.
In fact, rather astonishingly, there is nothing in the ED guide that warns physicians that there could be problems with the data in myhr?
Do they assume physicians are already aware of problems with reported penicillin allergies?
"Misdiagnosis of penicillin allergy is rife
18 January 2019
Posted by Felicity Nelson
http://medicalrepublic.com.au/misdiagnosis-penicillin-allergy-rife/18666
US researchers are urging doctors to double check their patients’ penicillin allergy status, as more that 95% of people with recorded penicillin allergy can tolerate this class of antibiotics.
Around 9% of Australians go through life avoiding penicillin because of a note in their medical record says they’re allergic, but only a tiny minority of these actually have clinically significant reactions to the drug."
For an organisation supposedly promoting safety and quality in healthcare this is a pretty poor document. IMHO.
@8:02 AM Perhaps, you might be right - it will be more than a little difficult for the ANAO to decipher the ADHAs obfuscations, distractions and obstacles in their path. However, as the ANAO is impartial, fearless, objective and competent, I think it is more likely they will expose the depths of the problems and shortcomings of the MyHR. Although I doubt whether, in doing so, they will be able to adequately navigate their way through the complexities to propose the actions required to redress the status quo.
@7:39 PM it will be politically impossible for them to recommend terminating the system, so all that will happen is that they will make some nice recommendations which will all the current business as usual approach to continue.
Politically impossible?
Only if the ANAO is beholden to or can be influenced by the government.
I'm told they are ferociously independent and cannot be influenced.
Politics, being what they are today, how would anyone know?
The Auditor-General just monstered the Federal Government re allegations of
political pork barrelling
https://www.abc.net.au/news/2019-11-06/auditor-general-slams-federal-government-regional-jobs-conflicts/11675874
The government has a choice - a quick kill or an ongoing sore. An election in not just round the corner so the first option is probably more palatable.
IMHO.
Monster away and reccomend till the cows come home, but so what. So what else can he do? Nothing. He's pretty powerless methinks. Does anyone disagree?
No real indication APS savvy managers are jumping ship so unless that happens I would suggest it is just another ANAO gateway review report.
I get the sense this may be happening - watch this space.
David.
David, does that mean you think the ANAO is nothing more than a toothless tiger?
On the basis of the way State Audit Offices have caused major change in at least Qld, Vic. and WA I do. The ANAO is pretty much as fearless and thorough as they get, on what I have seen in other domains - like pollies breaking their own grant rules etc.
If they reckon the #myHealthRecord is flawed they will say so.
David.
What maybe happening?
"What maybe happening?"
Think a major resignation or two...will be clear by the end of day
David.
A resignation! Surely you don't mean - empty the driver's seat and find a new occupant, inhale a breath of fresh air, buy more time, everything now fixed for another year, consider response to ANAO report post sacrificial lamb 'resignation'.
find a new occupant?
Something of a poisoned chalice, poisoned by the current incumbents.
Anyone who understands Digital Health won't go near it. If they don't understand, they deserve everything they get - just like the current incumbents.
You mean their leader deserves a $500,000+++ salary!!
.... "deserves' is inappropriare
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