Sunday, March 19, 2017

Why Do So-Called Experts Keep Making Total Nit Wits Of Themselves When Talking About The myHR?

This article popped up a few days ago.
  • Mar 16 2017 at 12:01 AM

Australia will lead world in medical technology, says Bill Ferris

Innovation and Science Australia chair Bill Ferris has pinpointed the medical technology sector as the shining light of the country's innovation, believing it could become the world leader in genomic medicine. 
The comments from Mr Ferris come ahead of a speech on Thursday to the Australian American Chamber of Commerce, where he will outline the six key challenges for the country to become a "top tier innovation nation".
They will form the backbone of the recommendations Innovation and Science Australia is preparing to deliver to the government by the end of the year to position Australia to be a global innovation leader by 2030.
"We're looking to 2030 and setting out what Australia can hope to be doing in a world leading sense," he said. "The one I'm most optimistic about is under the banner of digital health service delivery and medical documentation and history platforms, with these leading to better preventative procedures, analysis, big data access and all manner of new business applications.
"Big data will also fall under the heading of precision medicine, which stems from our capabilities in gene sequencing and pathology analysis. That is a huge area of activity and from our analysis Australia is already right up there and could be positioned at the front of the bus."
Precision medicine aims to create targeted therapies for individuals based on unique factors such their genes, environment and lifestyle. One branch of precision medicine is pharmacogenomics, which examines how genes affect a person's response to particular drugs.
The country already has the Australian Genome Referencing Facility, with the Melbourne branch based at the Walter and Eliza Hall Institute, while Sydney has the Kinghorn Centre for Clinical Genomics at the Garvan Institute. In November 2015 the National Health and Medical Research Council made the second largest grant in its history of $25 million to the Australian Genomic Health Alliance, a national network of 47 partner organisations including research institutes, hospitals and universities.
Mr Ferris said the medical sector was already world-class when it came to knowledge creation and the $500 million Biomedical Translation Fund would lead to more commercial successes. He also said the Department of Health's My Health Record database would open up new opportunities for start-ups.
"My Health Record works on an opt-out basis and privacy issues have already been well covered and in that sense we're ahead of almost anyone in the world ... it can become a valuable resource for better service delivery, prognosis, diagnosis and the basis for a whole pile of new business applications, including precision medicine," he said.
Lots more here:
Talk about simplistic magical thinking on the myHR.
First I am not sure anyone would suggest the privacy issues around the myHR have been fully addressed – we will only get to know that, if the system actually get used! Just how access can be provided securely to a mob of excited app developers hoping to develop the ‘next big thing’ is also a real worry.
Second it would be hard to imagine a system less suited to precision / genomic medicine than a large scale collection of .pdfs which is ill equipped to handle atomic data – especially atomic genomic data!
Third the lack of evidence of impact on service delivery improvement, diagnosis and prognosis etc. is pretty profound for the myHR.
It is interesting to note Mr Ferris apparently thinks the decision around opt-out has been taken – as was pointed out in a recent comment. No one seems to have told the public!
Lastly does anyone really believe this system will get to be so dramatically improved some time in even the far future that all this will actually be delivered. With the myHR track record to date I would be amazed!
My suggestion is that Mr Ferris confines his public comments to things he actually has significant in-depth understanding of, and not assume an ADHA briefing will provide the full picture!.
David.

16 comments:

Anonymous said...

My Health Record and genomics, that will result in a PDF gene sequence of an indervidual so citizens can marvel at what the Government can do and help a citizen take control of their health. I am sure there is a quaint little English phrase for that.

Anonymous said...

At least Mr Ferris is not sugar coating the fact this is about Government and Business not a patient. He might well be correct on the privacy front, given that Government Agencies seem to have powers that override any rights or dignities Australians may think they have.

Hope Tim has a KPI on solving the HI problem, need that matching capability sunshine, best you whip those CIO's into shape quick smart

Anonymous said...

Genomics and related technology is good.
However MyHR for research doesn't seem that useful. I don't see much value to using a data source that:
is a non-random sample;
has >95% missing data;
has uncoded nonatomic data elements contained in documents;
is not event based making longitudinal analysis very limited;
has no published comparison of data quality and nothing to validate completeness of any reliable random sampling that could be used.
It would be like trying to make sense of fragments of unfinished 5th grade assignments written on ancient papyri ie. you would not have a full story that could be published today. No amount of computer guesswork could guarantee accurately completing any of the stories correctly as intended.
I've seen how a quality data source enables high quality research within the limits of the methods used. Just because you have data on computer doesn't naturally make it useful and reliable. Garbage in will create garbage output. No amount of clever packaging or fragrant hyperbole will change that fact.
~~~~ Tim C

Anonymous said...

Event summaries are optional and summaries and cannot be drilled into so events and data can become missing in the process.

Develop, test, validate and improve methods for data collection in general practice including collaboration with researchers, coding/terminology experts, GP's and software developers. Use existing standards, update standards and create new standards as required. Teach the methods and reasons in the University courses along the way. Spread this amongst GP software and practices and then start with other specialties. Then as you can progress, move to hospitals and involve more allied health professions. Get it right on the small scale in one location then slowly upscale.

What is the value data collected using these new methods compared to existing data?
What is the cost of collecting this level of detail ?
What is the cost of not collecting reliable data?

They had pilot studies to test the signup, database and interfaces but no one tested the usefulness of the system for either clinical decisions or research. Some of the testing and changes have been made after launching but scope has been limited.
No one could automatically fill in the hospital admission forms based on a completed MyHR.

Anonymous said...

Might be safest if the ADHA are left right out of this. Standards and quality are not their cup of tea. I doubt they have the intellect in enough abundance to translate this into anything of value. Perhaps the Lady from MTV has an answer it has been 6 months.

Anonymous said...

11:15pm where is your evidence the the My Health Record is not fit for this purpose? The quality is down to the input at the feeder systems, any data quality issues is simply a change in best practice for healthcare workers and will improve over time.

8:09am, The Agency takes Standards very seriously as you will see very soon, quality is of the highest importance, again where is your evidence for this statement?

I appreciate that some old NEHTA people have been excused but we need a fresh start and new insight into digital health, old ways of thinking is not going to work.

Dr David More MB PhD FACHI said...


@ 9:44am

11:15pm where is your evidence the the My Health Record is not fit for this purpose?

I think that after 5 years there should be evidence that the myHR is making a positive difference to patient care and health finances - given its cost. I have seen none. A link would be good to some research that shows real demonstrated community benefit!

David.

Anonymous said...

@9.50 am "I think that after 5 years there should be evidence that the myHR is making a positive difference".

Kelsey has openly admitted on numerous occasions and Paul Madden has also said that NEHTA had lost its way and a fresh start was needed. Logic suggests that this means there is no value in harping back over 5 years like a broken record about something that hasn't worked. And because it hasn't worked there is no evidence that myHR (PCEHR) has made a positive difference. Surely David, you of all people, would find this admission reassuring, given your consistent criticism of NEHTA and more recently of ADHA, that "we need a fresh start and new insight into digital health, old ways of thinking is not going to work." They cannot say it any more clearly. Forget the past David and look to the future. In other words you just have to accept that $2 billion has been wasted and has to be swept under the carpet and written off while "we make (need)a fresh start".

Terry Hannan said...

All, the commentary here is great reading. Also any 'accessible or measurable data' in the MyHR is incomplete, ?inaccurate and only attempts to measure a small subset of a very complex genomic system. In addition those systems that can measure what we know about genomics have little understanding of the "meaning' of the data and its relevance to care.

Dr David More MB PhD FACHI said...

@10:59 said "In other words you just have to accept that $2 billion has been wasted and has to be swept under the carpet and written off while "we make (need)a fresh start"."

That may be fine but it is my belief the myHR is not a useful, fit for purpose initiative. If it is going to be continued with I want to see some genuine trials that assess clinical utility and value and the program put on hold until we have some evidence the ill-conceived dog is actually worthwhile.

Meanwhile I am not at all sanguine about $2.0B being simply "pissed up against the wall" At the very least those responsible should be held to account - just like ScoMo wants to do with bank bosses. To squander one billion is bad enough but to get to $2.0B before noticing major change is needed required someone to be held accountable!

If you want to press on prove it is actually a good idea!

David.

Bruce Farnell said...

I must take issue with anon@9.44

The question must be: "What evidence exists that the MyHR is fit for any purpose?" Aside from any other failing, it fails from a patient safety perspective as it is incomplete. Its only saving grace is that it is rarely used and this reduces the likelihood of someone suffering from some misadventure based on its incomplete information.

"Oh, but only 1.9% of people opted out of one of the recent trials so the community really want it" I hear you say to redirect the discussion. Well, a low opt-out rate, in this case, would reflect a very low level of engagement. It takes effort to opt-out and it won't happen unless people are motivated to do it. On its own, opt-out rate is a vanity metric and means nothing. How about a metric about the number or percentage of people who used the system more than once over a 3 month period. That might tell us something interesting and useful. All we know for sure is that 1.9% of people were motivated enough to opt-out.

As for standards, I would hope that ADHA is interested in the standards process. I look forward to the evidence which you promise will be coming soon.

Anonymous said...

A bit rich saying NEHTA lost its way, Paul Maddon was pulling the strings and he is still there pulling strings. You cannot keep sticking things on the pcehr if it is broken, how is that a fresh start?

Bernard Robertson-Dunn said...

Here are some metrics, based upon the government's published stats

As of 12 March there are 4,662,170 registrations. Despite what the government says this is not the same as health records - to have a health record you need to have a nominated service provider and upload a Shared Health Summary - at least, that's how I'd define it.

Since the system went live 649,331 Shared Health Summaries have been uploaded. You can't edit a SHS, you upload a new one and the old one is kept as an archive.

In the week up to 12 March there were 19,042 registrations and 12,507 SHS uploaded. This number represents new SHSs and updated SHSs. If all were new that would mean that only 65.68% of registrations had a SHS.

To estimate how many registrations have a SHS, assume that since MyHR went live each SHS has been updated once (it's as good an estimate as any). There have been a total of 649,331 SHSs uploaded.

In which case only about 7% (324,666/4,662,170) of people who are registered for a MyHR have a SHS. That's about 1.3% of the population.

These numbers could be wrong. More SHSs may have been replaced, in which case fewer people have a SHS or fewer SHSs have been updated in which case many are old and probably out of date. Either way, it isn't looking very good.

Dr David More MB PhD FACHI said...

Bernard,

Useful stats, but missing the one we need, namely how many times have clinical data been accessed to assist in patient care?

Until that figure gets published it is all too hard to be sure just what is going on. Not much based on the stats we do have.

David.

Bernard Robertson-Dunn said...

David,
Totally agree.

Two questions I keep asking:
1. How many times has a MyHR been accessed and used for healthcare purposes; and
2. How much money has the MyHR saved the government, or anyone else.

I have never had a single response.

BTW, SHS uploads peaked just before the ePIP deadline.

SHS uploads have been pretty flat (apart from ePIP and at Christmas) since just after the government pre-registered 2 million people last year.

If the usage were increasing, it would show in the SHS upload rates.

Registration daily rates seem to be gradually declining.

Unloved and unwanted.

Anonymous said...

After a careful read of the quotes attributed to Bill Ferris I acknowledge there is considerable merit in his view that "our capabilities in gene sequencing and pathology analysis" have the potential to position Australia right up there "at the front of the bus".

However, his views on the Department of Health's My Health Record are more than a little troubling. His comments are superficial, ill informed and without foundation. He would have been far better advised to first do some research to understand why the $2+ billion spent to date has delivered nothing of value.

As an experienced Venture Capitalist he has done himself a great disservice. It would have been more appropriate to make some mature observations on the huge risks involved in establishing such an ambitious national project and what investors need to do to guard against such projects failing.

As he knows little about Digital Health his pontificating will be interpreted and promoted by politicians and bureaucrats as justification for injecting another massive round of funding into the government’s My Health Record.