Quote Of The Year

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

Wednesday, August 01, 2018

When Wondering What Is Going On It Is Always Wise To “Follow The Money”.

This popped up over last weekend.

My Health Record money trail: Questions raised over health lobby groups ‘on payroll’

Sue Dunlevy, National Health Reporter, News Corp Australia Network
28 July, 2018
EXCLUSIVE
IN the wake of a growing public backlash and increasing scrutiny of the My Health Record, key health lobby groups backing it are declaring themselves to be on the payroll of the agency rolling it out.
We can reveal the Australian Digital Health Agency has spent millions of dollars of taxpayers money trying to co-opt the support of leading health and consumer groups for the government’s online My Health Record.
A News Corp investigation of government tender documents has found
* The Consumers Health Forum has received over $105,000;
* The Royal Australian College of General Practitioners nearly $2 million;
* The Australian Health and Hospitals Association $1.2 million;
* The Pharmacy Guild $194,000;
* Australian Council Of Social Service $32 500.
The Australian Medical Association and the Royal Australian College of General Practitioners both signed contracts with the government to promote the record to doctors in return for a $910 million increase in Medicare rebates.
In most cases the money was for educating their members or consumers about the record, mailing out letters and setting up a secure messaging system between doctors.
All the groups say they had in principle support for an electronic health record before they received the money, that the money did not change their view and some have been critical of aspects of the My Health record after receiving the money.
Every Australian will get an online My Health Record that will reveal if they have had an abortion, a mental illness, a sexually transmitted disease or a drug addiction unless they opt out by October 15.
Former AMA president Professor Kerryn Phelps says any individual or group that has received money from the ADHA needs to declare it.
“I have a very strong and unequivocal view that advocacy organisations like the AMA and other groups should not do deals with government in exchange for supporting programs,” she said.
“They need to be presenting a completely unbiased view on behalf of their members, we are not an arm of the government.”
The Australian Digital Health Agency has taken forthright approach in the last week.
Professor Phelps revealed after she spoke out about privacy problems with the record she received a phone call from Australian Digital Health Agency boss Tim Kelsey.
“What he tried to do was reassure me on privacy and security and I said I would have to proceed with my concerns,” she said.
“It was unusual to get a phone call like that,” she said.
Earlier this week a Parliamentary Library paper critical of privacy aspects of the My Health Record was removed from the library’s website and later a more anodyne version replaced it.
Queensland MP Bob Katter who shares privacy concerns has suggested the record is Orwellian.
“I read George Orwell’s 1984 and it scares me still. Big Brother is watching,” he said in a media release on his constituents concerns about the record.
The agency said it was collaborating with a wide range of clinical and consumer leaders and had 17 agreements with peak consumer organisations and informal agreements with another 15 organisations — to undertake collaborative communications activity around My Health Record.
“No stakeholder has been asked, as part of any contractual arrangements, to present a particular view point on having a My Health Record. Additionally, organisations are open and free to have their own views on My Health Record,” the agency said.
“These organisations are committed to the system and are encouraging healthcare providers to adopt use of the My Health Record system into daily practice,” the agency said.
More here:
Sue Dunlevy has been doing a sterling job letting Newscorp subscribers (sadly it is behind a paywall) know just what is going on with the myHR and the current opt-out process.
Most who have been watching all this closely have been rather surprised with the rather one-eyed support for the program being offered by the organisations listed and have always assumed this was due to funding from the ADHA having an influence. It is nice to see some specific numbers around the amounts spent. (Note the CHF does understand the myHR contending issues quite well as indicated from this blog post here:
and so it is even harder to follow the why they are not more balanced in their media releases.)
It is clear that, at least to some degree, ‘money talks’!
I will note, in passing, that Prof Phelps is by no means the only one to have had phone calls from Tim Kelsey (or his chief of staff) to try and have their views changed. Just so you know there is a fair bit of it going on behind the scenes, according to some very trustworthy sources.
David.

5 comments:

Anonymous said...

It may not be recorded in public record but as someone who works for an organisation on the ADHA just find. We are forbidden to have an opinion other than that given to us, we have been informed any comment on social media will be dealt with on the strongest terms. I am not able to say which PHN.

Anonymous said...

There is still a major question about the Government and My Health Record. How did the organisation’s head, Tim Kelsey, come to be appointed in the light of the disaster he presided over in the UK with a similar scheme – one which had to be scrapped in the end? And should not the Speaker be protecting Parliamentary Library staff from bullying by Minister’s staff?

On the Parlimentary Service, will the Health Minister be making a formal apology to the Parlimentary Service staff?

Anonymous said...

With the band aid measures announced by the Minister I believe there is now a case where the information being presented to the community in GP clinics, post offices, Bill boards etc, is incorrect and does not provide all the facts. Is this in breach of some other act? At minimal the CHF should be asking for the campaign to stop and new updated information be produced, the existing material quickly removed and replaced with accurate advertising.

If government wants to compete with the private sector it is only fair they play by the same rules, would another data collecting entity be allowed to get away with this level of mis-information, confusion and unsafe health products?

Anonymous said...

The RACGP might do well to send the Minister to see specialists, the quacks currently advising the minister are not doing anyone any favours. This is now becoming very complex and has the potential to open up a larger debate around government data collection methods and controls and out to the telecommunications sector and that nasty metadata retention law.

Bernard Robertson-Dunn said...

Let's have a brief recap.

The PCEHR was designed (not architected, but let's park that for the moment) to met some fundamental requirements.

1. Opt-in
2. No deletion of data ever, including no deletion of registration, complete records, or documents inside a record.
3. A central, government owned database
4. No identification of user, only institution (the design had NASH but that didn't work).
5. Legislation that supports/drives the design and use.

Six years after implementation some of these requirements have changed:

1. Opt-out
2. Deletion of an individual's complete record.
3. A central, government owned database
4. No identification of user, only institution.
5. Legislation changes - we don't know details yet.

In summary, the fundamental requirements have changed significantly.

What does the "Framework For Action" document say about this?

Nothing.

Is the whole document predicated on myhr as it exists today.

Yes.

Do current developments make the "Framework For Action" questionable, if not useless?

Yes.

What is the ADHA actually doing?

It is discussing with industry how to re-implement (they call it re-platforming, but that is misleading, something ADHA often tries to do but doesn't do it very well) My Health Record. Not just change the infrastructure but make fundamental changes to the whole thing.

They've had presentations from everyman+dog and have told them to expect an RFT some time after the opt-out period has finished. Late this year, early next.

WTF?

The mistake they made in the first iteration was to not widely consult with stakeholders, get consensus and buy in (something that is now leading to major issues with the opt-out program) and think it through.

We are now in a state of flux with many people finding out about this thing, not from the government but from the media. Opposition is building, the government is losing what little trust it ever had. It is also trying to pass the Data Sharing and Release legislation that will further impact the legislation within which myhr has to work.

And ADHA thinks that it can define a solution to a problem that hasn't even been agreed on, never mind analysed, and expect to issue a set of detailed requirements that vendors can respond to and then implement. In 4-6 months.

NEHTA, with its technical expertise (such as it was), could not deliver. ADHA with no development expertise thinks it can do what NEHTA couldn't do.

This is getting ridiculous.

Oh, and one final question.

How much is this new exercise going to cost and does ADHA have the money?

$2billion so far with no success. A three to five year program (an estimate of the project time) in which the old system has to be maintained and supported, a neew system built, a transition to the new system will cost at least another $2billion. I'd put it at $4billion.

What ADHA and the government doesn't realise is that this My Health Record system has now become totally political, not technical.

The opposition and the cross benches (including the red headed lady) are not convinced. Does anyone think that the government can go to the parliament cap in hand and beg for more money to fix this debacle? Good luck, is all I can say.