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, January 13, 2019

AusHealthIT Poll Number 457 – Results – 13th January, 2019.

Here are the results of the poll.

Which Of The Following Do You Think Is The Most Likely Fate Of The #myHealthRecord And The ADHA CEO By The End Of 2019?

MyHealthRecord Opt-Out Continues And Tim Kelsey Remains ADHA CEO 8% (9)

MyHealthRecord Opt-Out Continues But Tim Kelsey Removed As ADHA CEO 8% (10)

MyHealthRecord Moves To Opt-In And Tim Kelsey Removed As ADHA CEO 52% (62)

MyHealthRecord Is Shuttered And Tim Kelsey Removed As ADHA CEO 29% (34)

Another Outcome That Is None Of The Above - Leave Comment 2% (2)

I Have No Idea 2% (2)

Total votes: 119

What an amazing poll. A touch over 50% see opt-in restored. Another 30ish% see it shut down. Almost 90% see Mr Kelsey as being history by the end of 2019.

Any insights on the poll welcome as a comment, as usual.

A really, great turnout of votes for the time of the year!

It must have been a very easy question as only 2/119 readers were not sure what the appropriate answer was.

Again, many, many thanks to all those that voted!

David.

27 comments:

Dr Ian Colclough said...

It makes no difference whether it returns to opt-in or remains opt-out. Neither will do anything to fix the underlying problems that have led to this mess.

Anonymous said...

So very true. They have run out of options other than to do nothing and let it fester and rot like the fatberg in the London sewers.

Anonymous said...

I sense from this article the re-tendering for the MHR is commencing and the players are positioning their narrative

https://www.hospitalhealth.com.au/content/technology/article/increasing-patient-involvement-4-rules-of-engagement-395965355#axzz5cWqcJlkO

It is a fair set of observations.

Bernard Robertson-Dunn said...

"To be successful, patient engagement projects require careful planning and execution, underpinned by good understanding of the different patient cohorts and their unique requirements."

.... rather says it all. Hasn't happened yet, and is unlikely to happen with ADHA.

They were created to sell MHR, they don't have the ability to redesign it. Use of the term co-design shows they've got no idea how to create something as complex as a national health record system.

The first thing to do is work out what the real problem is (hint: not better record keeping)

If they were to better understand the problems of healthcare, they would soon realise the best solution is not a national health record system.

Dr Ian Colclough said...

@Bernard 2:02 PM, How much money is needed to fund the first step ie "work out what the real problem is"?

Bernard Robertson-Dunn said...

The real problems are well known. The medical profession has been documenting them for years.

What's been getting in the way are people coming up with simplistic solutions that try and improve today's solutions (e.g. better health record systems) when they should be looking at better ways of doing clinical medicine.

There's been some very good work been done that points the way forward. There's a few hints in this article:

https://insightplus.mja.com.au/2019/1/digital-health-success-hinges-on-four-principles/

The hard part is getting a broad enough understanding of the future of clinical medicine and then coming up with a strategy that can guide innovation in the appropriate direction.

It's not actually that hard, if you come at it from the right perspective. IT folk and people familiar with current medical practices have the wrong perspective.

By definition, the future is very different from the present.

As Henry Ford was reputed to have said (but didn't), "if I'd asked people what they wanted they would have said Faster Horses."

You don't ask people who have a complex problem and are familiar with existing solutions what the future should be.

To answer your question: Half a million dollars and six months should deliver a pragmatic and workable strategy - if you get the right people with the right skills and vision and if the people who commission it can understand it.

Implementing the strategy would cost research dollars but would be peanuts compared with the cost of ADHA and myhr.

Dr Ian Colclough said...

My engineering colleagues and I concur with you that "it's not actually that hard if you come at it from the right direction" and that "the hard part is to come up with a strategy which can guide innovation in the appropriate direction" that will have a reasonable likelihood of embracing the future of clinical medicine.

In my view this way of thinking is beyond the ken of government.

Anonymous said...

Has the problem not been coaxing numerous stakeholders into working together, gaining agreements on specifics, establishing a common language so as to understand where divergences reside. Agreeing joint trajectories allowing for differing partners pace of and order of change at a political, business, semantic, dat and technology viewpoint? How then to agree conformance in design, deployment and operations. How then to hold all these actors together over many years knowing that people will come and go, influences change and priorities will be reordered. And still allow for resilient model that can adapt to a face change landscape?

Dr Ian Colclough said...

@9:52 AM ...yes, that has been a problem and continuing down that path will give the same result as we have now.

john scott said...

Anonymous, 9:52am has provided an excellent perspective on the challenges.
If we work backwards from the challenges we would come to the following:
1. Do we understand the mission to be achieved?
2. Do we consider it 'worth doing'?
3. Do we understand how to present the challenge, particularly the narrative aspect so that it resonates with all stakeholders?
4. Do we have an approach that can address the various challenges identified by Anonymous?
IMHO we don't have any of the necessary answers and won't find any answers until we put the MyHR behind us and open the conversation to include new knowledge, new tools and indeed new institutions designed for such long-term collaborations.

Bernard Robertson-Dunn said...

January 15, 2019 9:52 AM
Only if you want to co-design faster horses.

As I said, above "You don't ask people who have a complex problem and are familiar with existing solutions what the future should be."

IBM didn't understand the future of computing, Microsoft and others did.

Microsoft and IBM didn't understand the future of the Internet. Many others did.

HMV didn't understand that people wanted music, not LPs, cassette tapes, CDs etc.

Free to air TV companies didn't understand that companies could get a better bang for their advertising buck on-line.

The print media didn't understand that it's the news that matters, not the paper its printed on.

Proponents of Digital Health think that medics want more and more data. No they don't, they need better data better managed, selected data and help in using that data in better ways. None of which myhr does and can ever do. If the government gets its way, doctors will drown in data, most of which will be useless.

If doctors get their way, the myhr will be ignored and will die. The only question is: When?

Most patients don't give a stuff.

Anonymous said...

John @12:15 PM I think the most appropriate answers are:

1. No.
2. Very subjective, questionable supportive evidence.
3. As the challenge has not been defined the answer can only be no.
4. Ditto 3.

Dr Ian Colclough said...

@9:52 AM Multiple committees delegated with responsibility to represent the views of multiple stakeholders to define 'the' problem for a politically turbulent, financially stressed, ever-changing, highly complex environment is not the place to start from.

Anonymous said...

@12:19 PM "Most patients don't give a stuff".

Now, that's a challenge Anon @ 9:52 AM.

Andrew McIntyre said...

The best way to solve the problem is to stop trying to impose half baked solutions on the population and squashing any innovation that might threaten your credibility, whatever credibility is left.

Just say if a standard exists you must comply with it and if not, its on your own head. Stop giving $ to software companies, but give it to users to compensate for the increased cost of compliant software and stop untested software transmitting or receiving medical data electronically.

Anonymous said...

3:17 PM patients are only one cohort. There are many many more actors that can be better served through advancement in health tools.

Anonymous said...

Sadly Andrew you measure of half baked is Tim Kelsey’s measure of epic, historical, game changing, innovative world-class, top notch, trail blazing excellence.

His and his right hand mns danger is they we bypass and ignore legislation and people privacy. Why?, simply because they have the NHS madero mindset that they own the data, not you or I, not the GP and specialist, not the states or territories. Inderviduals, public and private organisations, colleges, peak bodies advocate group are all their to serve them and but way of ass covering and justification, begrudgingly the see the health minister and government owning the data and they can do whatever the want with it.

Bernard Robertson-Dunn said...

If you want to see some real work being done to advance healthcare and clinical medicine have a look at this report on CRC funding.

https://www.business.gov.au/Assistance/Cooperative-Research-Centres-Programme/Cooperative-Research-Centres-Projects-CRC-Ps/Current-CRC-P-selection-round

Here are some of the projects and their total value:

Use of Narrow Artificial Intelligence to Detect Brain Aneurysms
$4,614,000

Artificial Intelligence System for Rapid Diagnostics of Disease Causing Mites and Insects
$6,589,315

Advanced Real-Time Medical Diagnostics using AI and an IoT Medical Device
$2,652,178

Smart Sensor & Deep Learning Behavioural Engine for Personalised Health Monitoring
$7,504,756

Improving surgical accuracy through the development of a novel intraoperative imaging solution
$9,077,582

OrpeusPOD: more hearts for more patients
$10,277,937

That's a total of just over $40million. That's much less than the ADHA advertising budget for opt-out.

The government is hell bent on paying huge amounts of money (>$2billion and growing) on a dubious data collection exercise. That money could have been much better spent on scientific and engineering research that would deliver benefits multiple times the cost.

Anonymous said...

Just a word of warning, it has been discovered that if you have opted out as a parent and are pregnant we are unable to prevent your new born being signed up automatically. You have to come through the help desk nd the process is not pretty. This has o be the worst assignment yet.

Bernard Robertson-Dunn said...

January 18, 2019 7:52 AM

are you saying that newborns are automatically signed up for a myhr in hospital?

I was under the impression that newborns could not be registered in hospital because they did not have a legal name until they were formally registered.

The legislation does not mention newborns but the explanatory statement for the 2015 legislation says

"In any opt-out arrangements, healthcare recipients will be given a reasonable opportunity to choose to opt-out. For example, in opt-out trials there will be an advertised period for healthcare recipients to opt-out, and in a national opt-out system it may be provided as a tick box on an application form to register newborns or immigrants with Medicare. It will be critical in any setting that healthcare recipients are provided as much information as possible about the My Health Record system to help them decide whether or not to opt-out, and are provided support to make that decision where necessary."

Most of that paragraph didn't happen, It would be interesting to find out what the newborn arrangements are (or will be after opt-out is imposed), as opposed to the rhetoric of the explanatory statement.

Bernard Robertson-Dunn said...

It seems most people who think they are allergic to penicillin aren't:

Misdiagnosis of penicillin allergy is rife
http://medicalrepublic.com.au/misdiagnosis-penicillin-allergy-rife/18666

I wonder how many other supposed allergies as recorded in myhr are equally suspect.

myhr is even more unreliable (and hence unsafe) than we suspected.

Anonymous said...

@7:52AM, is this done at the hospital or when the Medicare forms are filled? I am not sure when you have a HI assigned, either Medicare if the HI service would trigger this. Ether way sounds like the tiMHR is not mating siblings to partners and that a request to not be included in the system is either ignored or not possible. Tip of the iceberg?

And as way of some validation I do not a few twitters that seem to support this issue

Bernard Robertson-Dunn said...

Anon
January 18, 2019 1:24 PM

Assuming you can trust ADHA..... from

https://www.myhealthrecord.gov.au/for-you-your-family/howtos/frequently-asked-questions

"How can parents decide whether to get a My Health Record for a newborn child?

Parents of newborns can opt in or opt out of having a My Health Record created for their child as part of their child's Medicare registration. This includes after the opt-out period ends on 31 January 2019."

Anonymous said...

https://www.zdnet.com/article/apples-digital-health-plan-aims-puts-the-iphone-and-apple-watch-at-the-heart-of-your-wellbeing/

We need Government using our money to compete with the market? Exactly how will they manage that?

Bernard Robertson-Dunn said...

Following on from the unreliable penicillin stuff.....

AMIA: Clinical research and care need to be better aligned
https://www.healthdatamanagement.com/news/amia-clinical-research-and-care-need-to-be-better-aligned

'Despite widespread adoption of electronic health record systems by providers, data-driven healthcare remains “overwhelmingly” unrealized.

That’s the conclusion of a new American Medical Informatics Association paper, published on Wednesday in JAMIA Open, which calls for better integrating clinical research and clinical care to fully leverage America’s existing healthcare information technology infrastructure.

“Increasingly, all health stakeholders have the opportunity—and obligation—to leverage health information technology systems, and the valuable data they contain, for the development and delivery of new interventions,” state the paper’s authors.

“However, despite the unprecedented volumes of clinical data generated each day across hospitals, physician offices, urgent care facilities and neighborhood walk-in clinics, the ability to leverage these data to increase our knowledge of health and disease and drive improvements in care remain overwhelmingly unrealized,” they contend.'

In other words, even the comprehensive data in eHRs is not being utilised for research, never mind the mostly empty myhr characterized by being summary only, copies of some data from other systems, with no context or history.

Data, data everywhere, nor any drop to use.

Bernard Robertson-Dunn said...

About that article on Apple's healthcare push and the watch detecting heart conditions.

I wonder what their strategy is for dealing with false positives - which could frighten people and cost healthcare systems a lot of money demonstrating that the alert was false.

and false negatives when someone dies and the watch hadn't detected the condition.

No doubt they will be protected by terms and conditions, but it could be a bad look.

Anonymous said...

I would say whatever the strategy Apple would execute it with far more respect, transparency and openness than the ADHA or the Department would.