Sunday, June 18, 2017

With The MyHR Almost Five Years Old. Why Do We Still Not Have Any Idea If It Is Making A Positive Difference?

I thought I would have a look at the available statistics.
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My Health Record Statistics – at 11 June 2017
Published 11 June 2017
Over 4.9 million people have a My Health Record, with an average of 1 new record being created every 38 seconds.
Over 10,358,836 prescription and dispense records have been uploaded.
Over 10,035 healthcare providers are connected, including GPs, hospitals, pharmacies, aged care residential services, allied health.
Over 2 million clinical documents uploaded.
Dashboard display of My Health Record statistics
This page contains My Health Record statistics to 11 June 2017 .

View statistics as a dashboard - PDF 272 KB
Individual registrations
4,909,983 individual registrations
  • Of those registered, 54% are female and 46% are male.
  • Approximately 20% of Australia's total population is registered.
Age breakdown
The percentage of consumers registered for a My Health Record in a specific age bracket.
Age range (years)
Percentage (%)
20 or less
36%
20 to 39
25%
40 to 64
25%
65 or higher
14%
State breakdown
The percentage of those consumers currently registered for a My Health Record in relation to the total population of each State and Territory.
State
Percentage of state population (%)
Australian Capital Territory
24%
Tasmania
20%
South Australia
18%
Northern Territory
20%
New South Wales
21%
Victoria
16%
Queensland
27%
Western Australia
16%
Healthcare provider registrations
10,035 Healthcare provider registrations
Organisations registered
Total healthcare providers, broken down into common groups that are registered in the My Health Record system.
Organisation Type
Count
General practices
6,099
Public hospital organisations (there may be more than one facility within an organisation)
760
Private hospital organisations (there may be more than one facility within an organisation)
161
Retail pharmacies
1,334
Aged care residential services
166
Other categories of health care providers including allied health
1,251
Organisations with a cancelled registration
264
Total
10.035
My Health Record Usage
Clinical Document Uploads
Total number of clinical documents uploaded to the My Health Record system by healthcare providers.
Document Type
Count
861,035
999,509
267,532
48,226
29
61,998
50,607
Total
2,288,936

Prescription and Dispense Uploads
Total number of prescription and dispense records uploaded to the My Health Record system by healthcare providers and pharmacists.
Document Type
Count
8,051,819
2,307,017
Total
10,358,836

Consumer Documents
Document Type
Count
Consumer Entered Health Summary
85,768
Consumer Entered Notes
36,878
Advance Care Directive Custodian Report
13,479
Advance Care Planning Document
1,071
Total
137,196

Medicare Documents
Document Type
Count
Australian Immunisation Register
1,349,381
Australian Organ Donor Register
475,575
Medicare/DVA Benefits Report
295,373,315
Pharmaceutical Benefits Report
204,426,939
Total
501,625,210
Here is the link where you can see the page:
So what do we see here:
Well first the Government has basically created a great big duplicate database of MBS and PBS records (a little over half a billion of them!) I wonder why rather than just making them accessible?
Second of the 5 million who are registered on the system only 85,000 people (1.7%) have actually added any of their information.
Third – assuming a total cost so far of $1.5 Billion (smallest estimate) - we are have paid $17,647.00 to capture and store each of these records
Fourth it is obvious that Advanced Care documents and the like are a huge hit with the public NOT!
Fifth we have only 0.4% of the documents being something other than PBS / MBS records.
Sixth the Government sees fit to provide NO data on actual access and use of Shared Health Summaries by other than the creators – who have been bribed / paid to place them in the system.
Seventh there has yet to be even one non-anecdotal report of clinical benefit arising from the myHR.
It is clear that after five years the myHR is an expensive and ignored disaster. I wonder what the next five years hold?
A value for money audit is desperately needed.
David

44 comments:

Anonymous said...

A naive question so please excuse me this MyHR baffles me. Anyway out of interest why is the no item listed that equals the number of people supposedly subscribed? There must be quite a few out there woulndering why the signed up?

Anonymous said...

It is exasperating that they continue to pretend that uploads are the same as usage, or that the number of accounts reflects impact.

One can only measure usage, in the sense of data being USED to support clinical care, by DOWNLOADS.

Why do they never publish download data? Is it because (and this now is a wild guess ok) that hardly anyone is actually using it?

And of course, not wanting to bell the cat, but someone has to, even if a document is downloaded, that does not mean it actually changed anyone's decision, or had a consequent downsatream impact on patient outcomes or organisational efficiency.

Anonymous said...

Probably because unlike some who profit from all this would like us to believe your health information is not that relevant a majority of the time, unlike banking. Even super is looked at more often and for the vast majority we are more inclined to have the experts manage it. I am not saying HIT is not important, it is for the medical profession, I would just prefer they deal with diagnosis and treatments and not have me as a citizen used as some sort of lepper leverage to advance this GovHR.

Anonymous said...

I am par
t of a carers group which meets regularly to share experiences and problems we encounter in the course of caring for a family member with a complex chronic disease. Quite a few of us with help from our GP's registered our 'dependent patients' for My Health Record over 12 months ago. We recently decided that despite our best endeavours to opt-out because neither we nor our doctors have been able to get any value out of the system. All we have done is waste a huge amount of time and being totally frustrated with the system.

Anonymous said...

June 18 7:42 PM. Without going into details, would be interested in what expectations the care group had and why they might have been so, very interested in how the MYHR has seemingly disappointed sufficiently to result in this situation. I hope this care planning capability is not part of the strategy going forward for the MYHR, looking at this week numbers from the eHealth Branch it would appear the grey nomads have not embraced the system as predicated in the original case

Terry Hannan said...

David and others, this data reminds me of the commentary by McDonald and Tierney in 1996 on the value of negative trials in informatics. Is this a prime example?
1. Tierney WM, McDonald CJ. Testing informatics innovations: the value of negative trials. J Am Med Inform Assoc. 1996;3(5):358-9. Epub 1996/09/01.

Bernard Robertson-Dunn said...

To clarify these numbers:

The figure of 85,768 for Consumer Entered Health Summary is the number of CEHS ever uploaded, not the number of people who have one. If someone updates their CEHS it counts as a new upload.

Similarly with 861,035 for Shared Health Summary.

The number of SHS the previous week was 845,021 which is a change of 16,014 or 2,288 per day.

Some of these will be new SHS and some will be updates. If you assume half are new (1,144/day) and look at the number of new registrations (3,037/day) then that means only about a third of the people being registered are getting a SHS.

Another way of looking at this is to say that of the total of 861,035 Shared Health Summaries half have been updated therefore 430,518 people have a SHS.

Of the 4,909,983 registrations only 8.77% have a SHS. Which works out at 1.7% of the population.

I have a suspicion, but no proof, that a fair number of new registrations come from newborns and their mothers. The ABS figures for birthrate is about 900-1000/day. If hospitals are routinely asking mothers to register their babies and themselves (if they don't already have one) for a MyHR then a large proportion of the 3,000/day will come from newborns and new mothers.

A rather dismal set of numbers all round. Which is maybe one reason why the government only retains weekly statistics on its website, not historic data and/or any form of real analysis.

All of which might seem a bit strange considering how important the government considers data to be.

Anonymous said...

What expectations? We collated a lot of health information for ourselves as carers and our care-recipients to help us understand what health information we needed to be recorded.

Why interested in the MyHR? Our understanding of the personally controlled electronic health record was that it was very likely that it would be suitable for what we needed; alas, it was not.

Dr David More MB PhD FACHI said...

With this blog in mind has anyone seen any news of the planned new National Digital Health Strategy and what it plans for the future of the myHR to make it deliver acceptably into the future? I, for one, am very curious to know what they believe can the done to fix the myHR!

David.

Anonymous said...

2:36 PM my apologies, I did not articulate that well. I was not doubting you or anyone involved in the ability to coordinate the care. I was wondering what the MyHR claimed that led you to putting faith in it and what the less than expected result was. The whole MyHR seems misleading, discovering people are being informed it can support care plans is very concerning.

Anonymous said...

We weren't wanting a care plan. All we wanted was a health care record so we had all the important information organised in one place that we as carers could access and which our carer-recipients and their doctor(s) could keep current. That's why we thought it might have been worth trying the government's MyHR system.

Anonymous said...

Tell you the truth Grahame I would much sooner have seen the interoperability strategy commissioned through a standards body of some sort. The fact the AS is not even referenced says a lot. Yes the community has much to do to rebuild a fair open and honest standards structure. Can it be done? I believe so but for me the ADHA is to wed to a solution to be inderpendant nor do I believe it could allow such a valueable asset flourish at arms length. You will need more than just the skills needed to draft a standard to succeed though, I think your biggest problem is separating church from state.

Anonymous said...

8:00 PM. Oh, not sure what to say, that certainly is not much to ask and below what my assumption was of the system. I hope you found a better option and hope all is as well as it can be.

Anonymous said...

8:29 PM - it could be published Interoperability V2

Grahame Grieve said...

There's lots of things we might rather have. But I've found it useful in life to deal with what we have, rather than what we might wish we had. Irrespective, it's certainly true that we all need to contribute to building trust, and those with more influence need to contribute more to that than those with less.

Bernard Robertson-Dunn said...

re "All we wanted was a health care record so we had all the important information organised in one place that we as carers could access and which our carer-recipients and their doctor(s) could keep current."

Unfortunately MyHR wasn't designed to do any of that.

MyHR isn't organised in any clinically meaningful way. All anyone can do is upload documents or, in some cases e.g the shared health summary (SHS), replace existing documents.

And apart from the SHS, the Consumer Entered Health Summary and the Advance Care Planning Document (I don't know about the Advance Care Directive Custodian Report), all the data are about historical events - tests, event summaries, immunisations, allergy experiences, prescriptions, details of financial payments to health professionals etc.

All it really is, is a partial record of a patient's experience with the healthcare system.

Anonymous said...

Sometimes whispers from the void can enact change. If silence is maintained, don't make a noise when they come and no one remains to speak up for you.

Anonymous said...

Waste of time and money, standards is independent let it remain so. The ADHA is were the focus needs to be ensuring the foundation for innovation are in place over the next four years and the MYHR is replatformed on earth every citizen has a health record created for them unless they wish not to.

Bernard Robertson-Dunn said...

re: "the focus needs to be ensuring the foundations for innovation are in place over the next four years"

What a load of rubbish. How do you know where innovation will lead or what it will need? Making predictions re future developments is highly risky, constraining if incorrect and - if the government's track record is anything to go by - pathetically useless.

That's only my opinion but I've seen it so many times, it's a well founded opinion.

Bernard Robertson-Dunn said...

Talking about the government's track record in health.......

Child abuse reports double since Northern Territory intervention

http://www.smh.com.au/federal-politics/political-news/child-abuse-reports-double-since-northern-territory-intervention-20170619-gwu3vl.html

"The Federal Government's controversial intervention in the Northern Territory has been exposed as a multimillion-dollar failure that only worsened the abuse of Indigenous children."

Sound familiar?

Anonymous said...

Bernard it's not the government anymore it's Tim Kelsey, architect of social engineering and champion of the people over the evil medical fraternity. It's a cultural communication thing - tally-ho what what.

Bernard Robertson-Dunn said...

The governments (yes both of them - so what's common? the department) created MyHR well before Tim Kelsey. To be fair to Tim, he probably believed what the government told him but he wasn't equipped to detect the spin he's now obliged to repeat.

Tim didn't create the white elephant, but is likely to get the blame if he isn't very careful. Jumping ship earlier rather than later might work, unless he's trapped into a contract that favours the government's over his best interests.

Anonymous said...

5.30 PM Bernard ... never was a truer word writ. ".... he wasn't equipped to detect the spin he's now obliged to repeat" .... nor are some of his GM's

Anonymous said...

I think Tim would spot spin when he sees it, he is quite able to spin with the best of them. $ 500k+ does not buy simpathy. If he walked in blind it is. Ecuador I believe he sees his chance to prove the UK wrong and sell off our data to whoever has an open cheque book.

Anonymous said...

he wasn't equipped to detect the spin he's now obliged to repeat" .... nor are some of his GM's

Well excuse me, why are we paying them then?

Anonymous said...

@9.15 We are now exploring some other options.

You say what we want is not much to ask and below your expectations for the MyHR. That leads me to ask - Why, if what we want is not much to ask and given that it would be hugely helpful to carers, carer-recipients and their doctors, why doesn't the ADHA focus on that?

Anonymous said...

8:15 PM. Good question. Over to you ADHA

Anonymous said...

June 20 8:03, have another look apparently Release 8 was deployed on the weekend so I was informed yesterday. Supposed to be massive improvements in usability and now a mess view. Not sure why this one went unreported?

Anonymous said...

11.12 PM I've had a look. You said there are "Supposed to be massive improvements in usability and now a meds view". Could you enlighten me please of what exactly are those massive improvements.

Bernard Robertson-Dunn said...

I just had a look at my record and the Find Available Medicines
Information page says:

"We are currently experiencing an intermittent problem in displaying
this page. If you are seeing this message, please retry selecting
Available Medicines Information or select another option from the
navigation menu."

Multiple retries over 20 minutes gives the same result.

My guess is that "massive improvements in usability" means "a stuff up" and "intermittent" means "a consistent stuff up".

Just as well nobody is relying on MyHR for anything medically useful.

At least the Find Available Medicines page says "This view should not be wholly relied upon as a complete record of medicines related information." or - to put that into plain English - do not rely on the data in this record.

Bernard Robertson-Dunn said...

Just had another look (2 hours after the earlier one) - the intermittent problem is still there.

I also had a look at the medicare (MBS) data and came across one I didn't immediately recognise.

Date Number Description Service Provider
14-Jun-2017 10911 COMPREHENSIVE INITIAL CONSULTATION MR G*** C***

It took me a while to remember I'd had an eye test at OPSM that day. It certainly wasn't an initial consultation, I've been wearing glasses for decades and have only had my eyes tested at OPSM. Neither does it say anything about the status of my eyes; just that I'd had an eye test

Unless someone reading this knows that item number 10911 is an eye test they would wonder whom I'd seen and why.

All the information in my MyHR is about payments and events - there's absolutely nothing that is genuinely health related.

The prescription information is mostly wrong. There are medicines I have been told to discontinue, there are scripts I have been told to take amounts different from that which was prescribed and there are prescriptions I have been given and filled which are not showing.

So much for accurate and up-to-date.

Anonymous said...

I get the same error, or I did an hour ago, any medical people out there that can confirm the relevance of the data. An email forwarded me today would suggest someone has told TK it's the best thing since sliced bread and that 140 clinicians tested the product.

Anonymous said...

Looks fine to me, be great once pathology and diagnostic reports are in there. Still not clear on the point of all this but still it's only money and hardly makes the news, Government has bigger problems to take much notice.

Anonymous said...

Some people are never happy, this was a usability and functionality release not an accessibility or reliability release. Remember now the claims of all being fixed by Christmas have secured the funds its back to the grind, except now the ADHA is ill equiped to perform highly skilled work in a disciplined quality assured approach.

Bernard Robertson-Dunn said...

10:00pm, same error.

I think it's more than intermittent.

It may have been only a usability and functionality release, but at the moment, when it comes to usability and functionality re medicines, it's totally unusable and dysfunctional.

Anonymous said...

Not functioning? You have to wonder if UAT was performed in very controlled conditions and outside the actual system, I bet it looked good in power point. Tim where is the conversations around engineering and information modelling standards of practice. Maybe it should be renamed MyHR drop-out.

Cowboys at work.

Bernard Robertson-Dunn said...

10:00am and the "intermittent" problem is still there.

It's interesting that there has been no storm of protest about MyHR's problems on Twitter. I mentioned it on #myhealthrecord last night. So far - nothing.

To me it's quite obvious that there is little to no interest in MyHR apart from the people with a vested interest in its existence, not its use.

Anonymous said...

You are probably right Bernard, MyHR is a bit of a 'so what' thing. Still good to see the communication to inspire is working well.

Bernard Robertson-Dunn said...

What do MyHR, the Government's intervention in the NT problem of abuse of Indigenous children and the Lifetime Health Cover loading initiative have in common?

The Department of Health and a failure to live up to expectations?

http://www.smh.com.au/business/consumer-affairs/health-funds-say-lifetime-health-cover-loading-has-lost-desired-effect-over-17-years-20170621-gwvgcj.html

"The health insurance industry says the "carrot and stick" approach is no longer effective and is in "advanced talks" with the federal government about adjusting policy settings so that it can start offering LHC discounts to those who join a fund from age 25.

Peak lobby group Private Healthcare Australia is undertaking modelling, actuarial and marketing work to figure out how to best attract young people while avoiding "unintended consequences".

Bernard Robertson-Dunn said...

Over 24 hours and the "intermittent" problem is still there.

Anonymous said...

Probably safe to call it persistent. Good job your not in need of emergency care

Bernard Robertson-Dunn said...

A 10:00pm check and the page now doesn't show the problem message. I was going to say, the page works but as far as I can see, it doesn't.

According to "New improvements to the My Health Record System"
https://myhealthrecord.gov.au/internet/mhr/publishing.nsf/Content/news-031

it says: "The Medicines Information view can quickly sort and display medicines information held in a patient’s My Health Record documents in date or alphabetical order."

It is possible to sort by date (it's sorted by most recent anyway, all you seem to be able to do is sort by oldest), but you can't sort by anything else, certainly not alphabetically by Medicine - Active Ingredient(s).

For some reason, in mine, a discharge summary is included and the "Medicine Brand" column says "This document does not allow for a preview of medicines information. Click here to view the source document." The reason is because it is a pdf and all the pdf says is that I had a test performed. There's no medicine information anyway.

There is also a script for some amoxycillin - 20 Capsules of 500mg each. There is no indication why this has been prescribed, by whom and what the instructions are. I couldn't remember off-hand what it was for so I went looking and found the tablets.

The box tells me that they were prescribed by my dentist. I have had a hip replacement and my surgeon's instructions are that if I ever have serious dental work that I need to take 2 grams of amoxycillin (an antibiotic) as a precaution.

I have taken 4 tablets and there are still 16 in the pack. The instructions on the pack are to take one capsule three times a day until finished. Is even this correct? No. The reason is so that I'd have some spare in case I needed to take them next time or in an emergency. If the dentist had prescribed just the 2 Grams that's all I would have been given.

Is any of this evident from MyHR? No. There is no record of me having had a hip-replacement (it was in 2007), no record of me visiting a dentist or of a dentist prescribing antibiotics.

The big claim for this "improvement" is:
"Healthcare providers can benefit from the Medicines Information view by reducing the time usually required to search through recent summaries or relevant documents to find information about a patient’s medications. The Medicines Information view can also assist in the transition of care and medicines management for patients between their treating doctors and pharmacists."

The Medicines Preview is an attempt to bring together all the medicine information that can be distributed among a wide range of documents.

Unfortunately the reality is that the data in MyHR (and also on my script) is not to be trusted. The biggest danger is not so much what is there, but what isn't.

The most important missing information is context and relationships. Why has a script been prescribed? What else was prescribed? By whom? What are the real instructions; have they been followed? What effect did they have? How do scripts relate to health events?

None of this can come from Medicare/PBS data; it was never captured in the first place. Even if it were in an SHS and/or event summaries, navigating through all these documents to understand a patient's history is arduous and unreliable because of what is and might be missing.

IMHO, this is an IT fix to a clinical problem. Clinicians want to know about a patient's medicine history. The Medicines Preview is not a solution to the clinician's problem, it's an technologist's solution to what they think the clinician wants without understanding the real problem.

In summary, it's just a different view of bad data. Lipstick on a pig describes it rather well.

Anonymous said...

Bernard, you can guarantee that ministers and why not will have been give the app on their phones and tablets and will be blown over, the thought that this is amazing is they are looking at their own information so will already have a degree of contact and background to assist in deciphering the noise. All well and good, what needs to be validated is can the same be done looking at information without previous knowledge? If not I cannot help thinking the gimmick will soon loose its appeal.

Anonymous said...

We are simply moving into a very interesting period, as the number grows in subscribers and volume of data, nothing will remain hidden. Australia will be watched carefully to see if such a design lives up to the hype. Tim has promised much and my expectations are high. Even basically flaws as Bernard highlights will become major events, that is if anyone is there to notice.