The ADHA Tries To Suppress Information On #myHealthRecord Research They Paid For Because It Says It Is Mostly A Flop!

This wonderful article appeared last week:

Revealed: The 4.5 studies allegedly showing My Health Record isn't a waste of time

It took a Freedom of Information request to obtain them from the Australian Digital Health Agency

9th November 2020

By Antony Scholefield

Back in November last year, in days that now seem long-forgotten, a distant memory before COVID-19 and a world turned-upside-down, Australian Doctor was awaiting what it expected would be big news.

It was the Australian National Audit Office (ANAO) review of the My Health Record system and its judgement on whether taxpayers' dollars have been wisely spent, or, as some claim, tipped into a large black hole in the ground.

The most recent figures we had showed that GPs had uploaded almost three million documents to the system in a single month, partly a result of the Practice Incentive Program and partly in the hope that it would bring clinical life to a $1.4 billion policy monster.

Yet, it turned out 99.6% of them were destined for the void, because over the same month, fewer than 20,000 GP documents were actually read by any other health practitioner.

Despite such stats, the ANAO concluded the rollout of My Health Record, which actually began back in 2014, had been “largely effective” and that the plans to measure its impact on patient care were also “largely appropriate”.

What was Australia’s spending watchdog basing that on?

In its report it referred to a list of “benefit categories” for the system. They included things like “improved health outcomes”, "a much more efficient health system” and “avoided duplication of diagnostic tests”.

The audit office then referred to research studies related these outcomes, citing five studies commissioned by the Australian Digital Health Agency, the agency responsible for making the My Health Record relevant.

This was the first we had heard of any research. Maybe all the scepticism was unjustified. So we scrolled to the references. 

Unfortunately, there were no DOI, certainly no links. There were just five titles and a few paragraphs describing the barest bones of each study and its findings.

For an organisation tasked with bringing enlightenment to the health system by ensuring it shares knowledge, the digital health agency, particularly under its former CEO Tim Kelsey, hasn't always embraced the enlightenment philosophy when it comes to its own activities.

We contacted the agency and asked for the five reports, using the titles listed in the ANAO paper.

Our request was refused. It said that it couldn't give us the studies because they were part-owned by the five research institutions it commissioned to do the work.

Instead, it suggested we could submit a Freedom of Information request. 

So we did. The response took five months. (since corrected to 3 months)

The documents finally hit our desk on 2 March, the same day Australia recorded its first instance of COVID-19 community transmission. 

We got only four of the five reports mentioned by the audit office. But we were keen to know if they backed its claim that the My Health Record was on a pathway to success?

Do they indicated the system is delivering real-world benefits, like the long-promised reduced medication errors (which costs $1.4 billion a year) or say, a fall-off in unnecessary diagnostic tests for those patients signed up? 

The first paper was a mixed methods study looking at the ages and chronic ailments of about 10,000 people with a My Health Record and comparing it to the views of 35 GPs or practice staff of which patients would benefit the most.

GPs said older patients with multiple chronic conditions would benefit the most. No surprise there.

But this did seem to align with the numbers, where the cohort of patients with a record were skewed towards the 55-75 age bracket, compared with patients who did not have a record. 

Which is great but, given it was not clear whether these records were being read and used by clinicians, not the evidence that their care has improved as a result.

And unfortunately, the study found that the patients with a My Health Record were more likely than those without a record to be admitted to hospital for adverse drug events.

But before pulling the plug, fear not.

“This likely reflects the generally poorer health among the My Health Record group rather than any impact of having a My Health Record per se and that having a My Health Record was not, at this early stage of roll out, sufficient to mitigate, or even detect, adverse health outcomes for patients with more complex health care needs,” the researchers stressed. 

The second paper was an investigation into the eHealth literacy of patients in Ballarat.

It found patients considered more ‘eHealth literate’ — for example, those who search for health information online — were more likely to have a My Health Record and know about it. 

The third paper was a survey of GPs in South Australia and whether they appreciated the My Health Record training they had been put through. 

It found “with a few exceptions”, training did not change GPs’ preconceived views about the My Health Record.

“Deep-rooted resistors” generally remained deep rooted, “keen enthusiasts” remained keen, and the GPs in “the tentative middle ground” remained tentative.

How many GPs took part in this survey? A grand total of 13. It was enough for the national audit office.

One of the GPs, who apparently missed out on the training, said his colleagues who did undergo the training had converted him from a sceptic to a My Health Record believer. 

“I had a patient from another practice that came here for the first time and it was very useful to be able to get access to the patient’s medications,” he told the researchers. 

Again, not the crunchy numbers we were after. 

The fourth paper was arguably the most interesting among those sent to us because it actually focused on the role of the records in the clinical management of patients.

Researchers had looked at HbA1c tests, knee x-rays and benzodiazepine scripts for patients, with and without a My Health Record, who saw multiple GPs. 

They found patients with type 2 diabetes who moved between GPs were less likely to have HbA1c tests re-ordered within 90 days if they had a My Health Record. 

However, with just 40 patients in the cohort having a My Health Record, multiple GPs and HbA1c records, the researchers said the result had to be interpreted with caution. 

There were similar finding for x-rays for patients with knee osteoarthritis being reordered within a year, but again numbers were low - just 24 patients with a My Health Record, osteoarthritis and test results. 

The highest-powered part of the study was the 169 patients with a My Health Record prescribed benzodiazepines at multiple practices. 

It found patients with a My Health Record were prescribed benzodiazepines almost twice as frequently as those without a record.

Which again doesn’t seem a great outcome.

The paper explained: “Patients with more benzodiazepine prescriptions may have higher rates of multimorbidity and therefore visit their general practitioner more often and be more likely to have a My Health Record, resulting in an overestimation of My Health Record activity associated with benzodiazepine prescription." 

----- lots omitted -

More information:

• The Impact of My Health Record Use in Primary Care: a mixed methods study
• The Impact of My Health Record on Primary Care — final report
• E-health Literacy Study — Technical Report
• My Health Record: A South Australian General Practice Case Study

Basically the conclusion was that the #myHR did not make a difference in some studies and in others it was too early to tell!

A glowing review of Antony Scholefield’s  work appears here:

13 November 2020

The ADHA needs a new camel

Posted by Jeremy Knibbs

The last straw for the My Health Record (MHR) surely arrived this week with an FOI revelation that all the research the ADHA has done to prove to us the worth of this $2 billion project is meaningless fluff (we suspected that might be the case).

If the agency is going to survive in any meaningful form it’s going to need a new camel, and fast.

This week, an enterprising journalist working for our medical newspaper cousin, Australian Doctor, revealed he had followed up claims by the Office of National Audit (ONA) that the My Health Record was delivering on hard benchmarks of progress it had it set itself, by putting in a Freedom of Information request to gain access to the research the ONA was using to justify its claim. That full story is HERE. It’s a really good piece of journalism, although it’s unlikely to get the credit it deserves because there is so much happening around COVID, the ADHA has almost entirely turned over all its leadership, and most people are suffering MHR fatigue.

The premise of the piece is very simple and one we at The Medical Republic and Wild Health often push. The MHR is a project that is now in its 10th year if you trace it to its illogical birth as a thought bubble of a largely incompetent Labor health minister in about 2010. In that time it has:

• Cost the commonwealth the better part of $2 billion
• Traversed three different government agency structures and been rebirthed twice
• Most recently been championed by the ADHA and a charismatic UK based CEO who decided the only way to push it through was make it opt-out
• Never been set meaningful benchmarks for measurement of project success and therefore proceeded on what is really still “a gut feeling” that it’s a good idea.

The journalist suspected something might be up when he initially tried to access the results of the five cited pieces of research from the ADHA itself and the ADHA told him that as much as they would love to do that, the results were part owned by the organisations that did the research and it didn’t have the full rights to publish. We contacted on of  the organisations that did the research  and of course said they couldn’t release the results without the authority of the ADHA. A nice little merry-go-round.

So the journalist put in his FOI and patiently waited for the results. These were published this week and – surprise, surprise – there are no results to speak of. Each piece of research is niche and too small to tell us anything at all meaningful about whether the MHR is doing what its builders have promised us for 10 years:

• drastic increases to the efficiency and safety of the system, including, but not limited to:
• a reduction in prescription misadventure (we are oft quoted that 200,000 die per year from this and MHR will sort it out), and
• significant reduction in pathology test and imaging duplication in the system
• and creating a platform for vastly improved interoperability between tertiary, primary and allied providers.

Critics have long argued that if the ADHA truly really felt comfortable about achieving all of the above it would formulate meaningful ways to measure each criterion.

But it never has. It just puts out reports with giant numbers on them and doesn’t reference the numbers to past or the future, so there is no way of telling what is actually going on. Here is an example of one HERE

Much more here:

https://medicalrepublic.com.au/the-adha-needs-a-new-camel/37113

Essentially we are all still waiting to see any solid evidence that the $2B spent so far has even been remotely close to worth it!

Christine Holgate was fired from OZ Post for spending $20,000 extravagantly, so what do the ADHA deserve for $2.0B of evidence lacking extravagance. Your guess is as good as mine!

Lastly for a bit more fun this is quite a good yarn.

Govt responds to MHR inquiry, two years later

Denham Sadler
Senior Reporter

9 November 2020

The federal government has responded to a parliamentary inquiry into My Health Record more than two years after it was tabled, rejecting a recommendation to make passwords the default setting and to strengthen protections against the commercial use of sensitive health data.

The Labor-led Senate Community Affairs References Committee tabled its report in the My Health Record (MHR) system in October 2018, calling for a number of changes to be made to the electronic health record in order to shore up security and privacy and block access by employers and insurance companies.

The federal government did respond in part by introducing a handful of amendments, including allowing for the permanent deletion of MHR data and strengthening of privacy for young people, to the MHR scheme later in that year.

But for more than two years the government did not respond to the other recommendations included in the Senate committee report, until late last Friday afternoon.

In its response, the government notes or rejects most of the recommendations from the report that it has not already implemented, including for a PIN to be in place for a MHR by default.

The Senate committee had called for record access codes to be applied to a MHR by default, and only removed with express permission from its user, or by registered healthcare providers in “extraordinary and urgent situations”.

This is because shifting MHR to an opt-out model meant its default access settings should be “considerably higher”.

Lots more here:

https://www.innovationaus.com/govt-responds-to-mhr-inquiry-two-years-later/

Really pretty hopeless I reckon!

David.