Quote Of The Year

Quotes Of The Year - 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."

Wednesday, February 21, 2018

This Is An Area Where The myHR Might Help But Only With A Lot Of Work.

This appeared last week and got me thinking:

'Anything to save them': Medics reveal human cost of our denial

Emma Young
Published: February 15 2018 - 11:48AM
One day in an Australian hospital ward, two men were dying. Both lay in rooms off the same corridor. But their stories unfolded very differently.
The first was 95 years old. He had end-stage diabetes and heart disease. He had collapsed during a heart attack and was taken to hospital unconscious. There was no advanced care directive to indicate how he felt about treatments. His daughter arrived, shocked and distraught, and insisted on all possible treatment.
Doctors did CPR for 45 minutes, "jumping on his chest," breaking his ribs and sternum – as was standard for resuscitation, said Merran Cooper, the junior doctor who was on the wards that day.
"We could not bring him back to life," she said. "After a certain number of times the head physician had to call it – there was no oxygen left in his brain. By that time there were nurses crying."
Across the corridor lay another man, also 95, also very sick. His daughter, a nurse, and his wife were both with him. They had had family conversations about the end of his life well in advance. They decided this was enough, that they would make him comfortable and let him die.
"They had a room in which they could be together, and each had time alone with him, a little vigil," Dr Cooper said. "He passed away peacefully."
Dr Cooper is no stranger to the mystery and unfairness of death.
When she was 23, her husband Mark was diagnosed with leukaemia after they had been married six months. After 11 months of intensive treatment he was able to go home, only for the family to hear his bone marrow transplant had failed. Yet nobody said the "D-word" until a family friend visited.
"He said, 'Mark, you are going to die, whether it is now or in a few weeks or in a few years. Face it now. Speak to your parents, speak to Merryn. Stay hopeful but face it now.' It changed the last three weeks of Mark's life. He said goodbye to people," Dr Cooper said.
Mark was hospitalised on his last morning of life but medical intervention was minimal. He had no intravenous drugs, no tube down his throat. His wife and family agreed that this was it. His wife was able to lie on the bed beside him. Among his last words were 'Mezzy, you are so soothing'.
It was after this experience, and the death of her best friend at 45 of a neurological disease, that Dr Cooper decided to retrain in medicine. She finally gained her qualifications at age 56. Last year was her first as a junior medical officer. Since then she has seen many people whose last moments look a lot like the first father's.

Lots more here:


The idea of using the myHR as a repository of Advanced Care Directives (ACD) is hardly new but the issue is how to make sure they are both available, accessible and even more important it is really certain they reflect the patient's wishes so they will actually be acted upon if the time comes.

What this is going to mean is that those who want to have an ACD stored make sure their nearest and dearest all know there is a ACD available and they know what it says so there is no confusion or disagreement about what should be done.

Making the ACD's accessible to those who need them is a soluble technical problem. Building the social understanding and infrastructure in the community is a problem of an entirely different dimension that needs to be fully addressed in parallel before use of the myHR in this role makes any sense at all.

What do you think on all this?

David.

12 comments:

Anonymous said...

Throwing things at MyHR in a vain attempt to create relevance will simply distort the system even further. Why not a simply ACD registry. It sole purpose is to register ACD instructions. Simple to remember, simple to search and simple to fill in. IMHO the MyHR suffers from repurposing so often no one knows what its purpose is.

Anonymous said...

"no one knows what its purpose is" ... aahhhahem to keep bureaucrats employed?

Anonymous said...

surveillance

Bernard Robertson-Dunn said...

How about doing something like this?

http://coordinatemycare.co.uk/

Focused, run by people who know what they are doing and what is needed.

Anonymous said...

With 5.5 Million consumers registered and apparently 18000 a day new recruits why are we bothering with the expense and risk of opt out?

Anonymous said...

Because the power point slides have been commissioned and paid for and it is the only thing ADHA has

Bernard Robertson-Dunn said...

re: "With 5.5 Million consumers registered and apparently 18000 a day new recruits "

I don't know where you got that per day figure from.

These are the numbers reported this year:

[Date, Total registrations, change since last report, change per day]

7-Jan
5,457,903
35,871
1,708

14-Jan
5,476,996
19,093
2,728

21-Jan
5,496,456
19,460
2,780

28-Jan
5,513,545
17,089
2,441

11-Feb
5,553,019
39,474
2,820

Registrations per day are between 2,000 and 3,000

The number of Shared Health Summaries uploaded are similar. These would be updates and new SHSs.

My conclusion is that as the myhr grows it is getting less and less useful. i.e. the proportion of records with a meaningful SHS is getting smaller. If it were becoming more useful, you would expect the number of SHSs uploaded in a particular period to be greater than the number of new registrations.

The other interesting observation is the three month cycle that coincides with the ePIP schedule. My conclusions is that SHSs are being uploaded primarily because of government bribes, not because they are of much clinical use.

But then again, I may be biased.

Bernard Robertson-Dunn said...

Further to the number of registrations/day figures

According to the ABS, in 2016 the birth rate was 925/day.

Many, if not most, of these would be offered/given a myhr by the hospital.

Out of the 2,000-3,000/day new registrations, quite a few must be babies which means the number of adults volunteering for a myhr is even smaller than the figures would indicate

These babies will have a myhr from birth with no opportunity to opt-out - ever.

The need for consent to gather health data has been abolished with opt-out (it is now implied because the person has not opt-ed out)

The concept of consent is rapidly disappearing when it comes to the government. The census used to be anonymous in the sense that identifying information was destroyed after analysis of census data. That's gone out the window. ABS has publicly indicated it wants to link census data with health data.

The government's digital identity provider is rumoured to be, guess who? DHS. Probably because they already know most about Australians.

If you want to opt-out of myhr - who will you have to tell? DHS.

A myGov account will soon be mandatory for everything - you already need one for myhr, Centrelink is moving towards it.

This is all happening slowly and quietly - like boiling a frog, except that the frog story is a myth, unlike what the government is doing.

It would appear to be an application of nudge theory, the irony being that the Department of Health has resisted the trend, much to the annoyance of some of the other agencies. Don't assume that will last.

With health data, it all comes down to GPs, who are the source of much of the data the government wants in myhr. I wonder if they (either individually or through RACGP) are aware of the role it seems they are being expected to play in all this?

Anonymous said...

Maybe the figure is incorrect or misrepresentation of ‘Record’

MHR hits 5.5 million

MY HEALTH Record Statistics published this week show that more than 5.5 million Australians have now registered to have a My Health Record, with over 18,000 new records being created every week.

Source: https://www.pharmacydaily.com.au/news/mhr-hits-5-5-million/71506

Bernard Robertson-Dunn said...

Anonymous 8:06 AM said: "With 5.5 Million consumers registered and apparently 18000 a day new recruits"

The source
"https://www.pharmacydaily.com.au/news/mhr-hits-5-5-million/71506"
says
"18,000 new records being created every week."

which is exactly in line with my figures
They say 18000 per week == 2571/day
I said 2,000 - 3,000/day

Not exactly impressive though.

You can see why they want to make it opt-out, that will force the system to meet their target, which is registration numbers.

Unfortunately, registration numbers is meaningless when it comes to health outcomes.

In fact, IMHO, it is quite likely that the more myhr there are the less efficient is the health system.

The Department of Health should be careful what they wish for.

Bernard Robertson-Dunn said...

Something that has not been explained is what will happen after the opt-out period ends and everyone who has not opted-out is registered.

What is the position re permanent residents and people who are granted Australian Citizenship? Can they opt-out or only deactivate the My Health Record they have been forced to have?

Will all newborns be given a My Health Record? Can parents choose for their child not be registered?

When can a child decide not to participate?

Can they have their My Health Record completely removed or will it only be deactivated and stay in the system for the rest of their lives?

Does anybody know what the official position is?

Anonymous said...

If they way they treat their employees is a window into their culture and ethics then none of what you ask Bernard will have any relevance to them.

The three tenants of openness transparent and collaboration simply mean

You are expected to open you lives and personal details and these will be provided to any and all open cheque books whose business models are not based on caring what inderviduals think.

Transparency is a one way mirror, they can look but you cannot

Collaboration is simply about all citizen shutting up and expected to collaborate with Government wishes and provide whatever they ask.