Note: I have excluded any commentary taking significant funding from the Agency or the Department of Health on all this to avoid what amounts to paid propaganda. (e.g. CHF, RACGP, AMA, National Rural Health Alliance etc.
where they were simply putting the ADHA line – viz. that the myHR is a
wonderfully useful clinical development that will save huge numbers of
lives at no risk to anyone – which is plainly untrue) (This signifies
probable ADHA Propaganda)
-----
Submission to the Senate inquiry on My Health Record
Posted on September 11, 2018 by Grahame Grieve
This is the submission I made to the Australian Senate with regard to its inquiry into the My Health Record.
Executive Summary
My remarks relate to the following parts of the terms of reference:
a. the expected benefits of the My Health Record system;
b. how My Health Record compares to alternative systems of digitising health records internationally;
Recommendation:
The
Department of Health (DOH) and the Australian Digital Health Agency
(ADHA) work with the community to define an alternative architecture for
a federated system for healthcare data exchange. This would allow for
the implementation of the National Digital Health Strategy, and
stimulate innovation to improve health, and leverage international
standards and programs.
-----
GP-run school clinic to close due to teens’ data privacy fears
Doug Hendrie 13/09/2018 3:41:32 PM
A
ground-breaking Tasmanian school health clinic will close due to fears
that sensitive data uploaded to My Health Record may be seen by parents.
GPs are concerned young people will not divulge sensitive information due to fear it could be seen in My Health Record.
GP
Dr Robert Walker has run a student health clinic at Rosny High School,
which has around 1000 students, in Hobart for 10 years. It is one of
only two GP-run school health clinics in Tasmania.
But
he will close the clinic on 15 November, the day all Australians who
have not opted out of My Health Record will have a record made for them.
‘About
15% of our young patients have a [My Health Record], presumably
enrolled by their parents and almost all without their knowledge,’ he
wrote in a blog post.
‘These students are really distressed by having a [My Health Record] and now worry about their confidentiality.
-----
Published Sep 12 2018
My Health Record: think about the status quo before opting out
Featuring
Chris Bain
Professor of Practice in Digital Health Probable ADHA Propaganda
In
2017, Victorian resident Mettaloka Halwala died after his cancer test
results that showed signs of fatal lung toxicity were faxed to the wrong
number. The Victorian coroner ruled his death could have been prevented
had he not been let down by a systemic failure of healthcare
management.
Considering
this tragedy, it’s important to think about the status quo when
deciding to opt-out of the My Health Records (MHR) system, and the
status quo is poor.
As
you read this, reams of healthcare data is being sent between health
professionals in the mail, via fax, through conversations on the phone
or in person, via SMS or MMS, through WhatsApp and similar systems, and
in small pockets of secure messaging.
When
you think about this, it’s no wonder that health information goes
missing. There are numerous examples of paper medical files being found
in bins and inadequately disposed of, and examples of medical records
found by complete strangers.
-----
CSIRO lays out action plan for Australia’s digital health future
Staff writer | 12 Sep 2018
Consumer
distrust in data sharing, poor digital health literacy and system
interoperability problems are major challenges to the effectiveness and
sustainability of Australia’s healthcare system, according to a new
CSIRO report aimed at highlighting solutions.
Released on Wednesday, the Future of Health: Shifting Australia’s focus from illness treatment to health and wellbeing management
report is aimed at shaping future investments in the health system to
help shift the focus on illness treatment to health and wellbeing
management within the next 15 years.
“While
there has been a broad social shift, purposefully and inadvertently, to
sharing personal information in other sectors, consumer trust can be
rapidly eroded if the confidentiality, integrity, or availability of
their information is threatened,” the report’s authors stated.
-----
“Not fit for this purpose”: FHIR creator on My Health Record as the Senate inquiry gets underway
Lynne Minion | 13 Sep 2018
A
global digital health leader has called for a rethink on the
fundamental technology underpinning My Health Record, adding his clout
to the submissions to the Senate inquiry into My Health Record.
Creator
of the FHIR standard Grahame Grieve, who has provided technical advice
to the My Health Record program since its inception, has called for an
overhaul of the national health information platform, which he says was
built on technology that was state-of-the-art in 2007.
In
the decade since, according to Grieve’s submission to the parliamentary
inquiry, technology and society have changed through the introduction
of smartphones, wearables, cloud computing and high-speed broadband, and
with these tech advances have come major developments in data exchange
protocols.
-----
Helping patients to help themselves is good for the health economy
MEDIA RELEASE THURSDAY, 13 SEPTEMBER 2018
Australia’s
premier scientific body, the CSIRO has pinpointed empowering consumers
as a key to improving Australia’s health, confirming a message the
Consumers Health Forum has highlighted for years.
In its Future of Health report,
the CSIRO put “empowering consumers” as its number one point in
shifting Australia’s focus from illness treatment to health and
wellbeing management.
“The
report states that consumers are an ‘underutilised resource in the
health sector’, which CHF is seeking to turn around by encouraging
consumer involvement in direction and design of health care services
wherever possible,” the CEO of the Consumers Health Forum, Leanne Wells
said.
“As
the report says, consumers can be empowered by a greater focus on the
prevention of illness, and manage their health by improving health
literacy, reducing information asymmetry, expanding telehealth services
and developing consumer-focused health solutions.
-----
My Health Record needs to be compared to fax-based reality: AMA
The
Australian Medical Association has said privacy experts are comparing
My Health Record with a utopian ideal, not a doctor's lived reality.
The
debate surrounding Australia's My Health Record has seen a forensic
privacy and security analysis of the new system, but not one looking at
the current ways doctors and health providers communicate, the
Australian Medical Association (AMA) has said.
Speaking
to the Senate Community Affairs References Committee on Tuesday night,
AMA South Australia vice president Dr Chris Moy said the current state
of affairs for doctors is primitive, and has its own privacy
vulnerabilities.
"The
most common form of urgent communication is fax -- that's the real
world that we live in," Moy said. "This isn't particularly private
because I don't know where it ends up, where it is -- and it is
absolutely no use [asking me to send a fax] if I am not there
after-hours.
"We are living in this faxland.
-----
RACGP warns of parents’ ability to see teenagers’ data on My Health Record
Doug Hendrie 12/09/2018 2:43:39 PM
The
RACGP has alerted the Government to growing concerns regarding parents’
access to teenagers’ sensitive health data on My Health Record.
Dr
Nathan Pinskier, Chair of the RACGP Expert Committee – eHealth,
believes the issue of teenagers’ privacy is shaping up as a major
concern among GPs.
At a Senate committee inquiry
into My Health Record last night in Canberra, Dr Nathan Pinskier,
speaking on behalf of the RACGP, called for a halt to the current policy
allowing authorised representatives access to teenage children’s health
data.
Prior to the hearing, Dr Pinskier told newsGP that the issue is shaping up as a major concern among GPs, particularly in terms of sensitive areas such as sexual health.
‘Say
a patient is 15 and has a sexually transmitted infection. If a parent
sees [that data], it would cause significant consequences,’ he said.
‘How many kids at 14 think, “I can get my documents, take control and de-link my parents?”
‘And
if they did that, what would the parents say when they realise they can
no longer access their child’s records? It’s fraught with peril.’
-----
12 September 2018
Phelps warns of hidden landmines in MHR legislation
Former
AMA president Dr Kerryn Phelps has demanded a full review of the My
Health Record legislation to look for more “hidden landmines” after an
outcry by doctors over access loopholes.
Dr
Phelps has also told a Senate inquiry into the MHR that it should seek a
public examination of the business case for the Australian Digital
Health Agency to guard against possible future privatisation and
monetisation of patients’ data.
“We
have to ask what is the real underlying motivation for this massive
exercise in data mining. Surely it’s not primarily the patients’ best
interests,” she said, addressing the Senate Community Affairs committee
by videolink on Tuesday.
The
high-profile Sydney GP said she had been alarmed at the access
provisions revealed when she read the MHR legislation, despite
assurances by the health minister and the ADHA that “policy” was in
place to protect patients.
-----
Australia a ‘digitally-divided society’ finds global index
Tenth overall, but 'deep disparities' within
George Nott (CIO)12 September, 2018 00:01
Australia
has been ranked as the tenth most ‘digitally ready’ nation, in a new
index by Cisco and Gartner. But the research exposes a significant
‘digital divide’ between the states and territories, with Tasmania and
the Northern Territory being left behind.
The Cisco Digital Readiness Index, released today, measured the digital readiness of 118 countries, based on seven metrics.
While Australia scored highly overall, the report revealed “deep disparities across the country” and “widespread unevenness”.
Those
in the Australian Capital Territory were given a digital readiness
score of 21.14, while Tasmania scoring 9.65 and the Northern Territory
scoring just 4.80.
The
score is based on metrics including: human capital (total labour force,
adult literacy rate, population and years of schooling); basic human
needs (life expectancy, mortality rate, sanitation, access to
electricity); ease of doing business; and the start-up environment.
-----
AMA pushes for assurances on data protection at My Health Record inquiry
Marnie Banger AAP September 11, 2018 3:09PMTopics
AUSTRALIA’S
most powerful doctors’ group wants further assurances that data on the
federal government’s controversial e-health records system won’t ever be
handed to private health insurers.
The
Australian Medical Association will on Tuesday make the push at a
parliamentary inquiry examining the My Health Record system.
AMA
President Tony Bartone says the group is happy with strict restrictions
blocking private health insurers from accessing the data, with people’s
identities removed.
But he wants the status of the rules to be upgraded so they could only be changed through parliament.
“That
would give the parliament the opportunity to see any changes and ensure
that the Australian public is protected,” Dr Bartone told ABC Radio on
Tuesday.
-----
Protect data from private insurers: AMA
The
Australian Medical Association will be among those presenting at an
inquiry into My Health Record, pushing for assurances on data
protection.
Marnie Banger
Australian Associated Press September 11, 20182:10pm
Australia's
most powerful doctors' group wants further assurances that data on the
federal government's controversial e-health records system won't ever be
handed to private health insurers.
The
Australian Medical Association will on Tuesday make the push at a
parliamentary inquiry examining the My Health Record system..
AMA
President Tony Bartone says the group is happy with strict restrictions
blocking private health insurers from accessing the data, with people's
identities removed.
-----
Transcript: AMA President, Dr Tony Bartone, RN, Breakfast with Fran Kelly
11 Sep 2018
Transcript: AMA President, Dr Tony Bartone, RN, Breakfast with Fran Kelly, Tuesday, 11 September 2018
Subject: My Health Record
FRAN KELLY:
Well, the Federal Government's My Health system is back in the
spotlight with a Senate inquiry into the database holding its first
public hearing today. This comes just weeks after Health Minister Greg
Hunt announced new privacy measures to restore public trust in the
system.
[Excerpt]
GREG HUNT:
No police or government agency will be able to access any records
without a court order. That's the existing policy, but the legislation
from 2012 under Labor will be strengthened to do that. Secondly, we will
also ensure that if somebody seeks to cancel their record, it will be
deleted from the system permanently.
[End of excerpt]
FRAN KELLY:
Health Minister Greg Hunt speaking last month. But privacy advocates
still say that greater protection of personal health information is
needed, while private health insurers continue to lobby to get access to
the data.
The AMA is appearing at today's public hearing. President of the AMA is Dr Tony Bartone. Dr Tony Bartone, welcome back to Breakfast.
TONY BARTONE: Good morning, Fran.
-----
My Health Record lets down the patients who could use it the most
Some diseases are judged more worthy than others. People with mental health issues, addiction and obesity know it
Tue 11 Sep 2018 11.56 AEST
‘Whether
or not we should trust the medical system to advocate for our personal
wellbeing is a debate worth having. But it is also beside the point.
Many don’t trust it, whether for lack of resources or want of empathy,
and that itself is a problem when it’s a matter of public health.’
It
seemed like such a good idea: a digital vault for all of our health
records accessible by a variety of healthcare providers. But for all of
their promise, digital systems like My Health Record risks letting down the very people it could help most unless we acknowledge what makes a disease a disease.
Any
database of personal health records has to deal with two fundamental
problems. One is a fear that healthcare providers might act less as an
advocate for our personal wellbeing, and more as a gate keeper who
judges our right to treatment.
-----
Mums hiding from violent exes fear they'll be found via My Health Record
Pilar Mitchell | September 11, 2018
"This places our safety at risk - he has threatened to kill," one terrified mum said.
It takes a hell of a lot of courage for a woman to leave her violent partner
- so many women right now are desperately wanting to run out the door
with their children - but they often talk themselves out of it due to
paralysing fear.
And now that fear is being escalated with their children’s My Health Records allowing these dangerous ex-partners access to sensitive information including the family’s new address.
The reason for this because although an individual’s My Health Record is
private and can only be accessed by the record owner and medical
professionals, when the individual is a minor, records are visible to
parents, The Daily Telegraph has revealed.
In
a happy home, there is no issue for concern, but in a situation where
an abused mother has fled her home, a child’s My Health Record holds
sensitive data that could help a violent ex-partner track down his
family.
-----
My Health Record: privacy and data access under microscope
Tuesday 11 September 2018 6:36AM (view full episode)
The
outcry over privacy protections in the online health database My Health
Record has faded over the last month, but privacy advocates are ready
to renew their fight against the system, as a Senate inquiry into the
database holds its first public hearing today.
As
criticism of the plan to add every Australian to the register, unless
they opt out, grew louder in July, Health Minister Greg Hunt took steps
to strengthen privacy measures.
Those changes haven't satisfied the critics.
Private
health insurers are still lobbying hard to get access to the data,
although they say they don't want to see any patients' names attached.
Guests
Tony Bartone - Australian Medical Association
-----
My Health Record could be used to track women hiding from violent partners
Sue Dunlevy, National Health Reporter, News Corp Australia Network
September 10, 2018 9:13pm
WOMEN
in violent relationships fear their partner will be able to track down
their hiding places through their child’s My Health Record, a leaked
submission into a senate inquiry claims.
News
Corp has learned The Australian Digital Health Agency’s (ADHA) default
position is to allow those parents access to their children’s My Health
records which could contain information such as residential addresses or
the pharmacy or GP used by the parent.
And
where there is a dispute between separated parents over who can access
the child’s record, the ADHA will suspend both parents’ access to the
record until it investigates and decides which parent should have
access.
“We
work on the instruction of either of the parents who have equivalent
status,” the Australian Digital Health Agency told its steering
committee on August 20.
-----
My Health data revolution ‘can save lives’
- 12:00AM September 10, 2018
The
heads of Australia’s private health industry have argued that the
federal government has lost the narrative on the rollout of My Health
Record as they backed the initiative and called for greater use of data
to fuel preventive care.
Mark
Fitzgibbon, head of health insurer NIB, also rejected suggestions
insurers could be accessing data from the digital health record system.
“Forget
the idea insurers can use somebody’s individual health profile to
disadvantage them — in our world of community rating, enshrined in the
legislation and our culture, we charge people the same price
irrespective of age and health status,” he said.
The
rollout of the e-health initiative lost momentum as privacy concerns
dominated headlines, forcing Health Minister Greg Hunt to commit to
change the laws protecting consumers and their data. A Senate inquiry is
also set to examine the security measures around the e-health records,
which Australians have until October 15 to opt out of.
Medibank
chief executive Craig Drummond was confident the government would work
through the issues, adding that the insurer supported the digital
record.
-----
Data fears may spark opt-out choice in WA from My Health Record
Cathy O'Leary The West Australian Sunday, 9 September 2018 4:43PM
Cracks
are appearing in WA support for the Federal Government’s controversial
My Health Record, with a cybersecurity expert calling on people to opt
out.
Dr
David Glance, from the University of WA, who spoke at a public talk on
online safety at a City of Perth event this week, said he had opted out
along with many family, friends and colleagues in the security industry.
He
said data in the health records was limited but just having
prescription details was enough for someone to tell that you were taking
antidepressants.
Health
Consumers’ Council executive director Pip Brennan said that while she
personally opted in two years ago, she felt conflicted.
She
advised people who had sensitive medical information such as a mental
health diagnosis or drug issues and were unsure to opt out.
-----
Comments welcome!
David.
2 comments:
Nice to hear that 'faxland' is being pointed out to the Enquiry as the reality for most practices. A pity that secure messaging only exists in smaller enclaves, and the Canberra take over of the health IT agenda in the early noughties has let it fall off the backup of a truck.
The last significant forum about this topic I attended was in 2004 in the days of the General Practice Computing Group.
Shame too, that no-one in Canberra has seen fit to realise that the specialists' colleges haven't been involved significantly in health IT, and certainly there's been no discernable awareness regarding the impact of the NBN on fax technology. Not to mention that lots of clinical reports are being e-mailed 'in the clear', in ignorance of the risks.
There are now a number of “innovative” fax solution providers able to help you when crossing over to the NBN. It has probably breathed new life into the fax, as you can send messaging with improved DPI.
I am not sure how the NBN will impact services that need analogue lines powered direct from the exchange such as fridge monitoring in remote and rural small community care centres.
But like the MyHR it was dreamed up in the Ruddd/Gillard/Rudd/Abbott/Turnbull era where people and services were secondary to political announcements.
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