Quote Of The Year

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

Sunday, November 18, 2018

We Are Really At The End Of The Road With The #myHealthRecord. I Tweeted The Obituary A Day Or So Ago!

Here is the tweet.

Dr David More‏ @davidmore

Has anyone stopped to wonder why the #MyHealthRecord that was so flawless and ready for opt-out in June / July has needed so much legislative repair to get to be even half OK? Could a hubristic ADHA CEO and Board have anything to do with it and should they still be in a job?

3:01 PM - 16 Nov 2018

What I should then have gone on to say is that this whole fiasco must now be terminated as it has comprehensively failed and now needs totally re-imagined if it is to indeed proceed at all, and yes those who pushed for and created this disaster need to leave. It is hard to believe just how badly the Government has been let down by the ADHA and a Minister who did not seek independent advice on the issues he was facing.

Asking those who were accepting payments to support the system, is hardly the way to get neutral and unbiased advice on how to proceed. It is of note that many of these are now saying that "yes" change was and is needed as the program implodes.

Those opting out feel betrayed by a tin-eared and stubborn Government who would not accept they had many real and valid concerns, and termed calls for an Inquiry "a stunt".

Those who have been reading here for a while will know I am less than enthusiastic about the myHR project but I think it is fair to now call it out as a total cluster f..k. It has clearly been a mismanaged, misconceived and disastrously led program which needs vastly more than some legislative change to be made a success. Put simply it is doomed.

Among the key proximate contributing issues to this disaster - all attributable to the ADHA and its executive are:

1. A disastrously ill-conceived and targeted communications program.

2. A failure to be open and transparent about the risks associated with the program. The bipartisan political spin on supporting electronic health records makes one really wonder if they actually know what they are talking about.

3. An ill-conceived and ill-communicated switch from opt-in to opt-out, which has really spooked the public making them think of other mass data grabs and the risks associated.

4. Continuous and comical exaggeration of the possible benefits of the system in the absence of credible evidence.

5. A total failure to recognise the scale of the unpaid imposition of the system on clinicians.

6. Lying and deception as to the level of use of the current system and opt-out levels by concealing information.

7. A PR team at the ADHA who thinks the public does not recognise spin when it sees it. They do!

8. The ADHA just ignoring so much of the Australian population with the internet deprived, the very old and young and the remote just out of the loop.

9. The failure by the ADHA to understand the fundamental importance of specific consent and trust between doctor and patient.

10. Attempting such a dramatic change in an environment of public mistrust and cynicism and not facing this issue head on - rather than with pretty transparent spin.

In the more distant past the parents of this fiasco have been:

1. A total lack of a clear idea of what was /could be achieved by a National EHR and how this could best be implemented if a clear cut business case could be made.

2. Imposition of absurd political time-lines and technology choices on the prior PCEHR which meant is was handicapped from the start.

3. An inappropriate technology architecture for past and certainly current circumstances, where technological advance has made the myHR all but obsolete.

4. Gross political interference in many aspects of subsequent implementation.

5. A lack of clarity on what the system was for really. It is clear it is not a system focused on the needs of clinicians or patients so who is it intended to serve and why is the Government pushing so hard. Just what are they hiding?

6. A stupid and ominous stubbornness to accept that, as it is at present, the $2 Billion investment is now largely lost and needs to be written off.

7. A total failure to make a compelling case for either patient or clinician involvement with the system.

8. Conduct of reviews of the system by clearly biased proponents who possessed no special insight or knowledge.

There is a history to be written on this but can any-one really think that the program should continue without independent review, audit and assessment , and has lost virtually all the public trust it may have held.

It is clearly in its death throes and should be allowed to die quietly while totally new plans are made for what comes next. The current Board and CEO of the ADHA should also have nothing to do with the new National EHR Program, if we are to indeed have one.

Let’s be utterly clear, the present myHR is completely stuffed and we need to stop it before we all go blind!!

David.

9 comments:

Anonymous said...

Let’s no forget the many who were ousted from health because they thought when asked to speak their minds were instead betrayed. Let us also not forget the COO, she has a pivotal roll in this disaster and lead much of the past disasters.

I cannot see how this current lot can attempt to start interoperability, a model based on trust and a wee bit more complex than a central database.

Anonymous said...

The MyHR I would seem has gone from solution to requirement. That might be one reason the many relevant stakeholders are getting confused. When the politely say the are for the concept of sharing clinical information the mistakenly believe that requirement is the MyHR. Hence why perhaps they are reluctant to be bold and drop the dam thing.

Anonymous said...

Well said David. My only comment - it's not even half OK - it is totally unsuitable for anybody.

Anonymous said...

You can trace the bureaucratic failure all the way back to HealthConnect.

Anonymous said...

You would have to wonder if the myhr can move forward. The last great push, faulted, stumbled and now has run out of steam. It now has a stigma attached to it thanks to the brilliance of Tim Kelsey and his little band who Seems to think slick ads than honest explanation would win the day. The damage will be widespread and impact data use to evaluate government projects, inform policy and general budget allocations etc...

They could of coarse continue to push this but it has little chance of the hoped for universal adoption and use. The wave of clinical and consumer tools coming into the market driven by the FHiR movement will I believe force the myhr to be nothing more than a gateway into government held information that citizen can access if they so chose.

Regarding the poll, it is hard to image anything can move forward with the current public facing Executives and their management teams after this disappointing attempt.

Bernard Robertson-Dunn said...

The original design was based upon addressing the interoperability problem and linking existing health data repositories.

It all got too hard so they simplified it into a government owned and controlled database. The data is most certainly not patient controlled and it needs the patient to manage their privacy. It's also only a data dump - it contains no dynamic, data management/interpretation facilities that might make it useful. That will come from improvements in clinical systems.

The fact that it now means giving your data to the government is its biggest flaw.

All in all, as David has pointed out, it is the end of its road. It is highly likely that the issue of the government getting hold of personal health data and the threat (inevitability?) of scope creep will become an election issue. The Labor party and the independents may well get great electoral benefit from taking a "Government should not own our health data" stand. They've got very little to lose and a lot to gain.

When economists like Ross Gittins in today's SMS say

"Consider the hash they’re making of My Health Record where, among other things, the instigators are relying more on slick ads than honest explanation."

Benefits from big data at risk from untrustworthy, bungling politicians

https://www.smh.com.au/business/the-economy/benefits-from-big-data-at-risk-from-untrustworthy-bungling-politicians-20181118-p50gq3.html

You know the thing is sinking slowly. There is nothing the government can now do to re-float it.

Tim, aided and abetted by the AMA, have blown the trust needed for any sort of national health record - real or virtual.

This mega clusterf**k will not end on 31 January 2019.

Anonymous said...

David, this is bizarre in extremis.

"HEALTH Minister Greg Hunt has reminded the public that the opportunity to opt out or opt back
into the My Health Record system applies at any time in a person’s life."

Hopefully someone will ask the Minister "Why he has extended the Opt-out period to 31 January and then said a person can opt-out at any time in a person's life!"

Greg Twyford said...

If the government was even half-way competent, they'd realise that extending the opt-out period to say, 30th June 2019, would at least get the problem out of the way till after the next election.

Trying to get it 'implemented' beforehand will just buy them more grief. Canning it beforehand might also just give the opposition the chance to beat it up as another failure.

A cynic might even consider it a wonderful 'gift' to an incoming Labor government. Or even a payback for coming up with it in the first place!

Anonymous said...

Let’s be brutally honest here. The ADHA CEO and his fellow public facing executives were given a gift hoarse. They had well documented issues with the MyHR including the privacy, legal and security concerns. The had a captive community, comprising of highly experienced and skilled individuals covering all aspects of the problem domains more than willing to sort it out. They had 2 years and a stack full of cash.

Did they take advantage of this - no, they blew the cash, wasted every opportunity and pissed the broader community off, and the system and legislation are now such a mess it would be unwise and probably clinically unsafe to even attempt to “replatform”.

Personally Minister Inwould like to see at least for senior heads roll at ADHA. It might snap the rest of the Bureaucracy out of the daze and confused state and start serving the Australian public and listening.