Quote Of The Year

Quotes Of The Year - Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"


H. L. Mencken - "For every complex problem there is an answer that is clear, simple, and wrong."

Sunday, October 14, 2018

A Round Up Of The Responses To Part 1 Of The Senate Inquiry Into The #myHealthRecord And What Has Been Sadly Missed.

It seems that Labor had early warning – as you would expect – of the release of the Report on the Government plans to tighten the privacy and patient control protections of data held in the myHR.
There is a link to their release here:
Following this release and the report release we have seen these articles appear.
First we had this appear.

Labor vows to redraft My Health Record legislation

By Dana McCauley
12 October 2018 — 12:05am
Federal Labor has called for a rewrite of the controversial My Health Record legislation to prevent insurers and employers from exploiting patient data and to protect domestic violence survivors.
The opposition is drafting a suite of amendments to address weaknesses with the digital health records system raised in last month's Senate hearings, where medical experts and unions raised serious concerns that the current legislation could allow patient data to be used for commercial purposes.
"The Australian people need guarantees that the My Health Record won’t be privatised or commercialised," opposition health spokeswoman Catherine King told Fairfax Media.
"And they need guarantees that private health insurers will never get access to their data."
Ms King also called on the government to "do more to protect vulnerable children and parents fleeing domestic violence, and ensure employees’ right to privacy is not breached".
"If the government refuses to address these issues, Labor will move amendments in the Senate," she said.
Lots more here:
Then this appeared:

Labor pushes for e-health system changes

The federal opposition wants changes to the My Health Record system to better ensure privacy of the data.
Australian Associated Press October 12, 20189:26am
Labor will push for further changes to the federal government's controversial online medical records system, in hopes of guaranteeing private health insurers can never get their hands on its data.
Opposition health spokeswoman Catherine King says Labor will also seek changes to the My Health Record system to better protect the privacy of employees and women fleeing domestic violence.
More here:
Good detailed coverage came here:

Labor seeks updated My Health Record legislation to prevent privatisation

Australia's federal opposition party wants guarantees that My Health Record will never be privatised or commercialised, and that health data will be kept far away from private health insurers.
By Asha McLean | October 12, 2018 -- 02:22 GMT (13:22 AEDT) | Topic: Security
The federal opposition wants to fix the Australian government's controversial My Health Record, focusing in particular on amending legislation to ensure control of the online medical file can never be privatised or commercialised.
Labor has touted its plan as protecting the privacy of employees and women fleeing domestic violence, and as one protecting the public from having their medical history used by the likes of health insurers.
"Labor supports electronic health records. But the Senate inquiry we initiated into the My Health Record has exposed a range of deficiencies that must be addressed before this scheme rolls out to every Australian," a statement from Shadow Minister for Health and Medicare Catherine King said.
Specifically, Labor intends to move amendments to the Bill to prevent My Health Record from being privatised or commercialised; to disallow the Australian Digital Health Agency (ADHA) from ever delegating access to My Health Record to other entities; to ensure private health insurers cannot access the system's records, including de-identified data; that the privacy of employees is protected in the context of employer-directed healthcare; and that vulnerable children and parents such as those fleeing domestic violence are protected by narrowing the definition of parental responsibility.
King said the inquiry Labor announced in August revealed a range of "serious flaws" in the current legislation, which she believes were created by the government's rushed implementation of an opt-out model.
More here:
Last for now we had this:

Senate inquiry signs off My Health Record's new private parts

By Simon Sharwood , Matt Johnston on Oct 12, 2018 6:07PM

But ALP and Greens call for extension of opt-out and extra protections.

A parliamentary inquiry into the My Health Records system has produced a single recommendation – pass the bill with proposed privacy-enhancing amendments – but done so largely along party lines.
The My Health Records system became a hot topic after the government made it opt-out rather than opt-in, with a deadline of October 15th to make a decision. That deadline saw increased scrutiny of the system’s privacy provisions, resulting in concerns that the system meant data could be shared with law enforcement agencies, see minors’ sexual histories shared with their parents, and that deletion of records was not permitted if citizens opted out at a later date.
Health Minister Greg Hunt promised amendments to the program, but the Australian Labor Party (ALP) and Australian Greens called for, and won, an inquiry into the matter conducted by the Senate Standing Committees on Community Affairs.
That inquiry’s report (pdf) was delivered today and recommended the bill pass.
More here:
What I find interesting in all these articles is the lack of commentary on the range of technical, usage, complexity, clinical and  other issues and other risks.
To me, from the report, this is pretty telling:

“Committee view

2.59 The committee acknowledges the evidence provided by submitters and witnesses regarding the issues and concerns described in this section. The committee notes that these issues and concerns, whilst not directly applicable to the provisions of the Bill, are relevant to the effective operation of the MHR system.
2.60 The committee agreed to share evidence with its counterpart committee, the Senate Community Affairs References Committee (references committee), for the references committee's inquiry into the MHR system. The committee notes the matters discussed in this section will be examined in greater detail in the references committee's inquiry report.
2.61 The committee strongly believes the MHR system is a significant health policy reform, with the potential to benefit a large number of Australians through improved healthcare quality and health outcomes. The committee recognises that the national scale of the MHR system creates complexity in the design of the MHR system, and that the success of the MHR system significantly depends on the confidence Australians have in the system's capacity to protect their confidential health information. The committee commends the Bill's proposed amendments to the MHR Act that will, if passed, significantly strengthen the privacy provisions of the MHR System.”
I have the worry that  we are seeing the “if you have a hammer everything looks like a nail” phenomenon written large. The Senate understands Legislation, so let’s do that, and hope the other issues will be sorted somehow.
Unless the report of the Senate References Committee (due on Wednesday) does a lot better than this, and tackles the real technical, clinical, usability and sustainability (among other) issues head on,  we are in real strife. These are a good few submissions that made it clear a just few legislative changes won’t be enough.
Here is a link to the Report.
I wonder how it will play out? What comments do people have on the Labor plans for extra legislation?


Anonymous said...

Right up their with replacing Air Force one with Iplane one.

What does need to happen is for Tim and his cohort to be removed and replaced with people experienced in tackling informatics issues. Even FHIR needs a bit of work to move from simply being development for developers and start embracing clinical and architectural disciplines. I know these communities exist and this is not a swipe at FHIR just a reflection of my opinion of what the new standard needs to avoid being a slap on technology for simplistic intergration or a feel good factor.

Anonymous said...

@3:16 PM. That would be a readable move. The ADHA cEO and COO have squandered a considerable budget for no real positive return. Perhaps another ‘leaving on a high’ would be wise