Posts by Amused Onlooker

Sharing medical records with researchers: Assumed consent works in theory – just not yet in practice

When everyone is unique there is no such thing as anonymised data

If you wanted to find Stephen Hawking's medical records all you would need is his date of birth and the fact that he had amyotrophic lateral sclerosis (ALS) a form of motor neuron disease.

People with this disease do not normally live as long as Stephen did so there would be very few records with a similar date of birth. If it was known that he had certain complications at certain times, this would narrow down the choice considerably.

Leave out this information and it destroys the usefulness of the record.

You don't need much medical information to identify a person, considering everyone is unique.

And if someone has few or no medical problems they may well not be be in the database.

Hardly anyone uses Australia's My Health Record service

ADHA spin

The ADHA has issued a media release that tries to correct recent media reports about a lack of decent communication re optout

Original report

http://cruisewhat.com/privacy-groups-outraged-failure-inform-aussies-new-government-health-record/

"correction"

http://www.aapm.org.au/Media/News/ID/603/Correcting-recent-but-inaccurate-media-reporting-for-My-Health-Record

All they have done is confirm that the original report was correct - there will be no mass communication campaign (TV, Press, mail-out). The rest of the media release contains the usual half truths and spin.

Re: Data leaked in 3-2-1

It will be mandatory to give your data to the government. They can't make doctors use it. Doctors have their own systems which are far more useful. In fact doctors will need to be very careful about what gets into my health record, not because of what it might reveal about patients but of what it might reveal about themselves. My health record is only a summary/subset of a patient's medical data. It could easily be misinterpreted.

Re: Issue is lack of data

No it's not. The issue is relevant data, well managed. My Health Record is a heap of unorganised pdfs mostly just summaries and Medicare/PBS data which doesn't tell you anything about your medical treatment, only that you've seen a doctor or had a test or been given or filled a script. 90% of my health record data is useless Medicare/PBS stuff.

A better solution would be to put GP systems at the centre and support them with proper interoperability.

The Dept of Health owns it, ADHA runs it, but its operation is outsourced to Accenture - who built it.

What could possibly go wrong?

Why would you want to give the government your medical data?

Sharing medical data among your doctors is a good thing. Giving it to the government who will keep it forever and link it to other data isn't so good.

It's a thinly disguised surveillance tool.

Failed cancer data integration project means labs can't see patient histories

Re: Serious Questions

But do you have a My Health Record? Then the government would know everything about you and could use it against you if you criticise them - just like Centrelink did with/to Andie Fox.

And the same question should be asked of My Health Record - "Why is this a Commonwealth function?" GPs already have health record systems, why should the Federal Government run a system whose only function seems to be to link with other data. If only they could get people to use it. Oh, wait, they're about to make it opt-out.

94% of My Health Records have no shared health summary making them pretty useless.

NSW Education system fail: price rises, delivery slips, AGAIN

According to Accenture it's a success story.

https://www.accenture.com/us-en/success-new-south-wales-department-education-communities-learning