Quote Of The Year

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

or

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

Friday, April 06, 2018

I Wonder Does This Survey Have Any Implications For The myHR.

This popped up late last week:

 ‘Phenomenally low’ trust in Facebook among Aussies even before Cambridge Analytica

John Rolfe, News Corp Australia Network
March 30, 2018 10:00pm - EXCLUSIVE
AUSTRALIANS flat-out don’t trust Facebook anymore, four-in-five users fear their information is being hacked and more than half think Mark Zuckerberg should reimburse them if he’s pilfering their personal data for profit.
Just 15 per cent of the population are confident Facebook will keep their personal data secure, according to the national YouGov Galaxy survey that found the level of trust in Mark Zuckerberg’s social media behemoth was “phenomenally low”.
And the survey was taken before the Cambridge Analytica scandal revealed sensitive information was being harvested from more than 50 million Facebook profiles to swing the US election.
About 80 per cent of people fear their “identity could be stolen” through Facebook.
More than half think they should be paid if their information is onsold by social media networks too.
“If the survey was re-run now ... the level of trust in Facebook would have slumped significantly — and it was starting from a low benchmark,” YouGov Galaxy managing director David Briggs said.
The survey — commissioned by News Corp Australia — found 62 per cent of Australians do not trust Facebook.
And 84 per cent say they should be able to opt out of having their information stored.
Senior research fellow David Glance said Australians were finally “waking up to how much information they are leaking through Facebook”.
“Facebook built a platform, they don’t really know how it’s being used by bad actors and don’t really know how to control that,” said Associate Professor Glance, of the University of WA, who recently took steps to lock down his personal data on Facebook and sold his $30,000 of shares in what was, until recently, the world’s fifth-largest company.
“I didn’t want to be invested in a company as bad as Facebook,” he said.
Its business model was based on collecting as much information about users as possible “and exploiting it”, he said.
…..
The Federal Government is preparing a new law, the Consumer Data Right act, which Cyber Security minister Angus Taylor said would give people “the ability to control the access and sharing of their own data.
The legislation will seek to ensure that data can only be used for the purpose for which it was provided. It will also give people the ability to access and edit their data, and be fully informed about how it’s used.”
See the full article here:
A few things strike me about this:
First, how is the apparent exploitative abuse of personal data going to affect perceptions of data bases like the myHR?
Second, will the myHR offer a function like Facebook now does to allow  you to download all the data the Government holds on you within the myHR?
Third, will the Consumer Data Right Act give us all to access and edit our myHR data?
Clear answers to these questions would be good I believe!
David.

7 comments:

Anonymous said...

Quite agree David, some clear answers would be good.

Facebook is not mandatory, MyHR is.

Regardless of whether you choose to have one or not, the record is first created, then you can opt out. When you opt out, you opt out of seeing and accessing your record.

It is a government record, it is probably subject to some very tight rules around the destruction of government records.

Trevor3130 said...

The CDR Factsheet at Treasury includes

In general, ‘open data’ refers to promoting the availability and use of aggregated and de-identified public and private datasets for the benefit of society. Commonwealth Government open data initiatives tend to focus on opening up government held datasets for uses such as academic research.
The CDR differs from other Commonwealth open data initiatives because it entitles customers to share data arising from their own interactions with service providers.
The balance of the Productivity Commission’s recommendations relating to open data are still under consideration by the Government.


There's a lot going on in that. Elsewhere they say "The CDR could eventually be an economy-wide right, applied sector-by-sector where there was a benefit in doing so, ..."

The press release from PMC has Angus Taylor saying "Government is pursuing the very simple idea that the customer should own their own data."

I expect that each of those sectors will test Taylor on that "own data" premis. In my mind, the dots and dashes written in someone else's software, and on another party's hardware, that state my serum cholesterol was 5.9 on a certain date is not "mine" at all. However the questions of ownership are resolved (probably in the High Court) the emphasis of the CDR specifics is likely to be on access to transactions. Each of the sectors will have its own methods of constructing the digital identities of their customers, none of which will necessarily be anything like an approximation of my actual identity. So, for me to have unfettered access to the transactions carried out by a bank on behalf of their figment with my name on it will require additional handshakes on the basis of trust. Trust?

Meanwhile, someone has been digging into Facebook's recent patent applications. See https://twitter.com/jashkenas/status/981672970098589696

Bernard Robertson-Dunn said...

MyHR isn't mandatory, you can opt out.

The government says that if you opt out, you will not have a myhr created.

FYI, this is what the government says about deactivating your record (you cannot delete a myhr) or cancelling your registration:

"If you cancel your registration with the My Health Record system or you die, the following will occur:

All documents in your My Health Record will be kept in the My Health Record system.

Documents held by us will be retained for a period of 30 years after your death or, if the date of death is unknown, for a period of 130 years after the date of your birth;"

It's in the privacy statement
https://myhealthrecord.gov.au/internet/mhr/publishing.nsf/Content/privacy-statement

It appears to be a Department of Health rule, not a requirement under the Archive Act.

Paul Madden said at Senate hearings that they don't delete a record in case you want to re-activate it later. How you do that after you've died, he didn't explain.

Anonymous said...

I am not convince Bernard that a record will not be created. I think it will be but just not accessible but will collect information. Under the guise of you having a complete record when you decide to opt in at some future date.

In the meantime in the public news -

Since the Cambridge Analytica privacy scandal first broke last month, Facebook has tried out a number of PR strategies to address the growing outcry. At this point, the social media company is just going for broke, telling the public it should just assume that "most" of the 2.2 billion Facebook users have probably had their public data scraped by "malicious actors."

Anonymous said...

One thing learned from the Opt-Out Trials was that records can be created for dead people.
For the opt-out trials in 2015/16 I seem to remember that letters were sent to people saying hey you now have a record! Family members were shocked when they received letters for their recently bereaved.
I wonder if they will send out letters for the big bang 2018 opt-out. If not, then we may have quite a few records created for dead people and no one will know, and if recently deceased, then MBS PBS and possible discharge summary data will be loaded into the record.
Ah well, at least the opt-out stats will benefit - dead people doing their bit to make the Government more effective.

Trevor3130 said...

Facebook sent a doctor on a secret mission to ask hospitals to share patient data may have been noted already.

From Why Zuckerberg’s 14-Year Apology Tour Hasn’t Fixed Facebook by Zeynep Tufekci -

Again, this isn’t a community; this is a regime of one-sided, highly profitable surveillance, carried out on a scale that has made Facebook one of the largest companies in the world by market capitalization.

I wonder if the concept of "the MyHR community" is being whispered at ADHA. If so, I hope someone with wisdom & courage will ask "WTF are you talking about?".

Anonymous said...

Community is everywhere in the ADHA messaging. They will rebrand it ‘the people’s democratic expenditure healthcare record’