Quote Of The Year

Quotes Of The Year - Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"


H. L. Mencken - "For every complex problem there is an answer that is clear, simple, and wrong."

Thursday, December 20, 2018

This Has To Be The Most Rabidly Annoyed Article Regarding The #myHealthRecord So Far.

This popped up on my radar last week:

My Health Record could mean a death sentence!

14th Dec 2018 7:38 AM
Living with multiple, complex and chronic health conditions I have been in-and-out of hospitals (general and emergency admissions) throughout my life and attended at numerous specialist appointments both here in Australia and overseas.

Now for people like myself, My Health Record sounds fantastic.

But as they say, if it sounds too good to be true it usually is!

The government promulgates that "My Health Record is an online summary of your key health information.

"When you have a My Health Record, your health information can be viewed securely online, from anywhere, at any time - even if you move or travel interstate. You can access your health information from any computer or device that's connected to the internet."

Well imagine my surprise and horror when I recently checked My Health Record online:

Diagnostic Imaging Reports - "No information is available"
Discharge Summaries - "No information is available"
e-Referrals - "No information is available"
Event Summaries - "No information is available"
Pathology Report s- "No information is available"
Shared Health Summaries - "No information is available"
Specialist Letters - "No information is available"

The reality is, My Health Record is of NO BENEFIT to those like myself with multiple, complex and chronic health conditions.

I have a case which contains over 2000 pages of medical records. My Health Record has none!

This is the very reason why I hold copies of my health records, pathology results, referrals, specialist reports, imaging files and reports, hospital admission and discharge summaries.

As well, l have another case with two inches of X-rays, MRI, CT and US Scans.

So many times I have had to rely on those records I have in my possession when going to specialists.

Among the first things a specialist will ask is how was your condition diagnosed, where, by who, when; do you have any test results, scans, etc.?

The biggest concern of patients like myself, with a myriad of complex and chronic health conditions, is that reliance by any health agency on My Health Record could mean a death sentence, permanent incapacity or worse - permanent disablement and a life of suffering.

My Health Record has no historical medical records, there are missing records, there could be data access issues resulting from network connection failures, hacking, or viruses.

Is it worth the risk?

We've all experienced the inconvenience, effects and implications of Telstra data and network failures.

If My Health Record is to be palatable to patients like myself, then it needs to be an accurate repository and resource where all of my health records (historical, current and future) are securely stored, promptly added to, and can be accessed without reservation or hesitation on the part of any medico, specialist, or health agency so that my medical situation, issues and concerns can be dealt with without delay.

All Australians need to be secure in the knowledge that medical records held pertaining to them are complete, up to date without any gaps, and accessible.

But the one problem in trying to fix My Health Record is cost.

The federal government is trying to fly a plane without wings - it will only crash and burn like the failed Home Insulation Scheme. It's another dud!

The rest of his annoyed rant is here:
All I can say is that the ADHA has one very grumpy critic!


Anonymous said...

Poorly managed expectations

Anonymous said...

A joke straight out of a Christmas cracker.

Anonymous said...

Here is a question for this community.

If people are allowed (or encouraged) to opt out of MyHeathRecord, the data becomes biased and will not be reflective of the whole population. It also opens up a rabbit hole of ethical issues. If you haven’t contributed to the MyHealthRecord data set, is it fair that you should have access to a new, life-saving cancer drug that was developed based on insights from that data?

Bernard Robertson-Dunn said...

IMHO the myhr is a very dubious source of health related data and the probability of it providing valuable insights is close to, if not zero. In which case, your question is irrelevant.

The question you ask is also somewhat problematic – if someone develops cancer (or other condition), why should they receive any sort of treatment that they haven’t been involved in the development of?

If the government were serious about medical research it would get far better value for money through something like the Dunedin Study in New Zealand.


Andrew McIntyre said...

December 20, 2018 9:28 PM

While myHR data might be useful for surveillance by ASIO it is not going to be useful for developing a life saving cancer drug. We already have, or should have, cancer registries. The pathology data is not atomic so you would have to transcribe values from a pdf, whereas the pathologists have it all as atomic data. It is also incomplete wrt a single person so you have no idea if the data is correct or complete.

eHealth holds a lot of promise for data analysis, but the data needs to be as complete as possible and as lossless as possible to be truly useful and this is what provider EHR systems should hold and what cancer registries should do. Sadly the quality of all these important things is less than it should be and the focus on myHR is taking away resources from any effort to improve the actual data and its reliable movement under strict privacy provisions.