Quote Of The Year

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

or

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

Tuesday, November 13, 2018

Here Is What Happened In The Senate Yesterday On The #myHealthRecord! Senate Not Happy!


Here is the Hansard.

My Health Record

Senator DI NATALE (Victoria—Leader of the Australian Greens) (15:51): I, and also on behalf of Senator Watt, move:
That the Senate—
(a)    notes that:
(i)    members of the community have expressed significant concerns about the inadequate privacy and security provisions currently present in the My Health Records Amendment (Strengthening Privacy) Bill 2018 (the bill),
(ii)    senators will not have an opportunity to debate the bill until the week beginning 12 November 2018,
(iii)    the opt-out period for the My Health Record is currently scheduled to end in the same week, on 15 November 2018,
and
(iv)    the Federal Government has extended the opt-out period once before, supposedly to allow passage of the bill;
(b)    expresses disappointment that the Federal Government has chosen to not follow through on their commitment to the Australian people to strengthen the legislation which governs the My Health Record, meaning that any choices that the Australian people make about opting out will not be sufficiently informed; and
(c)    calls on the Federal Government to extend or suspend the opt-out period until the legislation and any amendments are passed, outstanding privacy and security concerns are addressed, and public confidence in this important reform is restored.
Senator RUSTON (South Australia—Assistant Minister for International Development and the Pacific) (15:52): I seek leave to make a short statement.
The DEPUTY PRESIDENT: Leave is granted for one minute.
Senator RUSTON: On 7 November Minister Hunt announced that the government will introduce further legislative amendments to ensure the safety and privacy of health information in the My Health Record system, including provisions to protect people against domestic violence and tougher penalties for those who misuse the system. These will be voted upon in the Senate this week. Those who wish to delete their records after the 15 November opt-out date can do so at any time throughout their lives and their record will be deleted forever. The legislation to enable My Health Record to become an opt-out system passed the parliament unanimously in 2015.
Senator DI NATALE (Victoria—Leader of the Australian Greens) (15:53): I seek leave to make a short statement.
The DEPUTY PRESIDENT: Leave is granted for one minute.
Senator DI NATALE: The Greens initiated a Senate inquiry into the My Health Record because we listened  to the concerns not just of the medical community, the IT community and privacy advocates but of the Australian community. They made it very clear that they hold huge concerns about the rollout of the My Health Record. Now is the appropriate time to press pause and to extend the opt-out period for a further 12 months. If we proceed as is planned, every single Australian will have a record created for them on the 15th of this month, in a few days time. We're going to press ahead with that when significant changes are yet to be made to the legislation that has  already been identified as creating enormous concerns around people's privacy. The government flagged that they are going to introduce amendments. Those amendments have not yet passed and yet every Australian will have a record created for them in several days time.

Senator WATT (Queensland) (15:54): I seek leave to make a short statement. The DEPUTY PRESIDENT: Leave is granted for one minute.

Senator WATT: I just want to put on the record that this also comes out of a Labor initiated inquiry and this is a co-sponsored motion by the Labor Party. Labor have, from the very beginning, indicated our concern that the opt-out period is not long enough to deal with the many concerns that members of the public have. We put forward amendments in our inquiry report, which the government has fortunately and finally listened to, but it is still our view that the opt-out period needs to be extended and that's why we are supporting this motion.
The DEPUTY PRESIDENT: The question is that general business notice of motion No. 1167 standing in the names of Senators Di Natale and Watt be agreed to.
The Senate divided. [15:56]
(The Deputy President—Senator Lines)
Ayes                     35
Noes                    22
Majority              13


AYES
Anning, F
Bernardi, C
Cameron, DN
Carr, KJ
Chisholm, A
Collins, JMA
Di Natale, R
Dodson, P
Faruqi, M
Gallacher, AM
Georgiou, P
Griff, S
Hanson, P
Hanson-Young, SC
Hinch, D
Keneally, KK
Ketter, CR
Leyonhjelm, DE
McAllister, J
McCarthy, M
McKim, NJ
O'Neill, DM
Patrick, RL
Polley, H
Pratt, LC
Rice, J
Siewert, R
Singh, LM
Steele-John, J
Sterle, G
Storer, TR
Urquhart, AE (teller)
Waters, LJ
Watt, M
Whish-Wilson, PS




NOES
Abetz, E
Bushby, DC (teller)
Canavan, MJ
Cash, MC
Colbeck, R
Duniam, J
Fawcett, DJ
Fierravanti-Wells, C
Fifield, MP
Gichuhi, LM
Hume, J
McGrath, J
McKenzie, B
Molan, AJ
O'Sullivan, B
Payne, MA
Reynolds, L
Ruston, A
Scullion, NG
Smith, DA
Stoker, AJ
Williams, JR

Question agreed to.
-----
Here is the link:
I wonder what happens next?
David.

The Senate Has Apparently Voted To Extend The Opt Out Period.

Hansard is yet to appear.

Here is what we have so far. From yesterday’s Dynamic Red for Nov 12. 2018

General business
1167—Senators Di Natale and Watt—My Health Record
Commenced 3:51 PM
Agreed to (Senate divided: Ayes 35; Noes 22)

Details are to come.

Here is an early report.

There are just days left to opt out of My Health Record - but there's another push to extend the deadline again

  • The Senate today demanded an extension to the opt out date for My Health Record.
  • Australians have until Thursday this week to say they don’t want a digital health record.
  • But the Senate today says this should be extended until promised privacy protections have been put in place.

 Here is the link:

https://www.businessinsider.com.au/my-health-record-deadline-senate-opt-out-2018-11

David.

Monday, November 12, 2018

Weekly Australian Health IT Links – 12th November, 2018.

Here are a few I have come across the last week or so. Note: Each link is followed by a title and a few paragraphs. For the full article click on the link above title of the article. Note also that full access to some links may require site registration or subscription payment.

General Comment

Lots happening under the surface this week. The inability of the Government to face the reality that profound change is needed in the myHR program is the big worry however. Any ideas on how to change their minds?
-----

17 million Australians to be automatically enrolled in My Health record

By Dana McCauley
5 November 2018 — 5:18pm
About 17 million Australians will be automatically enrolled in the My Health record if they do not opt out by next Thursday, despite lingering significant privacy concerns about the federal government's controversial e-health system.
Legislation that would enshrine a patient's right to permanently delete their record, and ensure that police may only access a person's medical history with a court order, is yet to pass Parliament but politicians will not get a chance to debate the bill before the opt-out deadline passes on November 15.
A Senate inquiry into the rollout of the e-health system last month recommended that the opt-out period be extended by 12 months and legislation substantially rewritten to safeguard patients' safety and privacy, but Health Minister Greg Hunt refused an extension.
It is understood that the government has been considering other recommendations from the Senate report.
-----

Govt adds new safeguards to My Health Record

By Justin Hendry on Nov 7, 2018 10:00AM

Stronger penalties for misuse.

The federal government has moved to introduce extra privacy and security changes to the legislation behind the controversial My Health Record just a week out from the end of the opt-out period.
The proposed amendments are focused on introducing tougher penalties for system misuse, including by employers, as well as strengthening provisions to safeguard against domestic violence.
They add to the August changes to privacy provisions to make it harder for agencies and police to gain access to the content of a personal electronic health record and allow individuals to delete records permanently at any time.
-----

The state of Open Data 2018

A selection of analyses and articles about open data, curated by Figshare

22 Oct 2018
Figshare's annual report, The State of Open Data 2018, looks at global attitudes towards open data. It includes survey results of researchers and a collection of articles from industry experts, as well as a foreword from Ross Wilkinson, Director, Global Strategy at Australian Research Data Commons.
The report is the third in the series and the survey results continue to show encouraging progress that open data is becoming more embedded in the research community.
The key finding is that open data has become more embedded in the research community – 64% of survey respondents reveal they made their data openly available in 2018. However, a surprising number of respondents (60%) had never heard of the FAIR principles, a guideline to enhance the reusability of academic data.
-----

ResMed pays $1bn for US health software company MatrixCare

  • November 6, 2018
Sleep device maker ResMed is expanding its out-of-hospital software portfolio into long-term care settings through the $1 billion-plus acquisition of a US health company.
The Australian-listed company (RMD) announced today it had signed an agreement to buy privately held MatrixCare for $US750 million ($1.04bn).
ResMed said its target was a leader in US long-term post-acute care software, serving more than 15,000 providers across skilled nursing, life plan communities, senior living and private duty.
 “The acquisition of MatrixCare is an excellent addition to the out-of-hospital software portfolio that we can offer our healthcare provider customers,” ResMed chief Mick Farrell said.
-----
  • Updated Nov 6 2018 at 4:41 PM

ResMed buys US software company MatrixCare for $1b

by Jessica Gardner
ResMed has pushed further into the health software industry with a $US750 million ($1.04 billion) purchase of US company MatrixCare.
The purchase of MatrixCare, which is used in more than 15,000 locations across the United States with a focus on long-term care, is the third major software purchase for the Sydney and San Diego-based company that has its origins in manufacturing devices that treat sleep apnoea.
Minnesota-based MatrixCare provides software to organisations across the nursing, senior living and retirement industries. The software is used to manage care, nutrition management and payroll, among other offerings.
------

Qld looks to ditch SMS for ambo dispatch

By Justin Hendry on Nov 7, 2018 7:00AM

Wants mobile terminals for real-time data push.

Queensland’s Ambulance Service hopes to end its reliance on SMS and radio as the primary means of receiving call out information across the state.
The agency is planning to introduce mobile data terminal in its frontline ambulances to improve how it responds to the more than one million requests for assistance received each year.
Paramedics and emergency medical dispatchers outside of South East Queensland currently communicate by voice communication “either over radio or through mobile networks”, QAS said.
-----

1ST signs another large medical centre group to MyHealth1st platform 

1st Group Limited (ASX: 1ST), the Australian digital health, media and technology group, today announced it has signed an initial 1-year contract to provide SmartClinics, a fast-growing network of 34 GP medical centres, with a range of MyHealth1st technology solutions to digitise more of their patients’ journeys, drive practice efficiency and improve health outcomes. 
The MyHealth1st platform will replace the medical centre group's existing use of HealthEngine and HotDoc, competitors of the MyHealth1st platform in the GP category.
1st Group's platforms are Australia's leading solutions in Independant Optometry, Pharmacy & Veterinary markets, and also support large numbers of dental, physio, podiatry, hospitals, government agencies and corporate health service providers, with now over 8,000 sites across Australia and New Zealand.
-----

New alliance to drive innovation in aged care

02 Nov 2018
RMIT University has joined innovAGEING to create a knowledge alliance that will link research with product and service development in the aged care industry.
RMIT has joined forces with innovAGEING, Australia’s first innovation network for the aged care industry
“We’re excited with this partnership,” said Merlin Kong, Principal Adviser for innovAGEING. “Having consulted with industry in developing innovAGEING, there was strong interest in translating research into practice, and validating progressive models of care with research evidence.
“There was also interest in demand-driven design in aged care, and developing sustainable new business models—in this regard, our alliance with RMIT marks a meaningful step in addressing ongoing industry interests.
“Aged care is a broad industry, and RMIT is strategically positioned as a leader in cross-disciplinary, practice-based research with a focus on putting people first through innovative design and creative practice.”
-----
  • Updated Nov 7 2018 at 11:00 PM

Billy, a health tech start-up keeping the elderly out of aged care, raises $5m

An Australian start-up that seeks to keep elderly people out of hospital and in their homes living independently for longer by monitoring them remotely has raised $5 million from one of South Australia's largest aged care service providers.
Billy uses a series of discrete sensors placed around the home to build a picture of daily activities for family of the elderly residents in their own home or in an assisted-living environment. Activity information can be shared with the family via a smartphone app and can be alerted if there is a change in pattern.
It gives data in real time and looks for changes in behavioural patterns, such as skipping medication or going to the toilet more than normal patterns, which could indicate another health problem.
That technology piqued the interest of Enabling Confidence at Home (ECH), one of the largest integrated providers of retirement village accommodation in SA. The non-profits chief executive David Panter said it also had the potential to be used globally. 
-----

Aged-care providers urged to publish ‘atrocities’

  • AAP
  • 9:35AM November 8, 2018
Aged-care providers are being urged to prominently publish their shortcomings and sanctions so families can make informed decisions about where to send their loved ones.
South Australian Senator Skye Kakoschke-Moore is pushing for legislative changes to force aged-care companies to publish all noncompliance notifications and punishments on their websites.
-----

Patient dominance in healthcare imminent, says Qld ehealth chief

James Chalmers | 08 Nov 2018
Healthcare will be entirely reorganised around patients in as soon as a decade, one of Australia’s foremost digital health leaders has told a Brisbane conference.
In opening remarks at the HIMSS AsiaPac18 conference in Brisbane on Tuesday, eHealth Queensland CEO and CIO Dr Richard Ashby spoke of the provider-patient partnerships that are increasingly being seen in healthcare systems are simply a transitional state.
“Within 10 to 15 years it won’t be a partnership – the consumer will be completely dominant in the relationship,” he said.
“It’s their healthcare and they are going to demand that they are actually in charge of it.
-----

DHS adds new digital assistant to myGov

By Justin Hendry on Nov 9, 2018 10:27AM

'Charles' in charge of new accounts and service linkages.

The Department of Human Services has added a fifth Microsoft Cortana-powered chatbot to its armoury to deal with questions pertaining to the myGov government services portal.
The new digital assistant, dubbed ‘Charles’, will give the more than 14 million users that currently use the central authentication platform instant access to answers for common customer queries.
Charles, which operates in both myGov's authenticated and unauthenticated space, will provide information about creating an account, linking new services and what to do if an account is locked or suspended.
-----

'We have to design for the human in mind': putting ethics into AI

By Ruth Williams
7 November 2018 — 12:00am
Medical students are trained with the famous Hippocratic Oath in mind - first, do no harm.
Kriti Sharma, artificial intelligence technologist and inventor, would like her industry to adopt a similar oath - to first, "do no evil".
Sharma, vice-president of bots and AI at accounting software company Sage, is a vocal advocate for ethics in AI - and for the human experience to be at the centre of technology design.
"When we build AI systems we have to design for the human in mind from the beginning - how the human will feel in the equation," she says.
-----

Queensland privacy law reform on the horizon

In late 2017, the Queensland Department of Justice and Attorney-General released a report flagging its recommendations for changes to Queensland privacy laws.
While legislation has not yet been introduced to give effect to the recommendations, it is worth understanding the trajectory of the law to accommodate potential changes in current and future privacy practices and contracting arrangements.
The report comes almost 10 months after the government announced it was reviewing the Information Privacy Act 2009 (Qld) (IP Act) and the Right to Information Act 2009 (Qld) (RTI Act). Our publication on that review and the corresponding consultation paper is available here. The report makes 23 recommendations for amendments to the IP Act and the RTI Act.
In relation to reviewing the IP Act, the report grappled with three sets of privacy principles – the Commonwealth Australian Privacy Principles (APPs), the Queensland National Privacy Principles (NPPs) which apply to Queensland health agencies, and the Queensland Information Privacy Principles (IPPs) which apply to non-health Queensland agencies.
-----

HIMSS AsiaPac 18 - Leadership voices: healthcare anytime, anywhere

November 06, 2018 07:13 AM
The opening plenary of the HIMSS AsiaPac 18 Conference saw an engaging discussion and sharing by the five esteemed panelists on some common global challenges of healthcare, current examples as well as their hopes of what can be achieved in the future.
The HIMSS AsiaPac 18 Conference in Brisbane officially started today with an opening plenary, Leadership Voices: Healthcare Anytime, Anywhere featuring five healthcare leaders and experts with experience from different parts of the globe. Dr Charles Alessi, Chief Clinical Officer, HIMSS, the moderator of the panel started with an opening question to the panelists – what are the drivers and challenges of healthcare?
Dr Manish Kohli, Senior VP and Chief Medical Information Office (CMIO), Aurora Healthcare and Chair, Global Board of Directors, HIMSS said that from his experience in the US and bringing a Cleveland Clinic to Abu Dhabi, healthcare systems around the world are struggling with the same issues – providing quality care, ensuring accessibility to care, reducing costs of care, enhancing the clinician experience as well as the patient experience.
-----

First Australian hospitals achieve highest global digital health standards

Two Australian hospitals have been officially recognised as the first hospitals to adopt the highest international standards of digital health at the Healthcare Information and Management Systems Society AsiaPac18 Conference and Exhibition.
St Stephen’s Hospital Hervey Bay (UnitingCare) and the Royal Children’s Hospital Melbourne are being accredited as Stage 7 – the most advanced stage of the HIMSS Electronic Medical Record Adoption Model.
St Stephen’s Hospital Hervey Bay has achieved EMRAM Stage 7 for its inpatient facilities and Melbourne’s Royal Children’s Hospital has achieved Outpatient EMRAM Stage 7 for its outpatient clinics.
-----

South Australia Police to be able to compel passwords and biometrics from suspects

Suspects who fail to hand over passwords, fingerprints, or other biometrics to access devices will face five years in the slammer.
By Chris Duckett | November 8, 2018 -- 03:39 GMT (14:39 AEDT) | Topic: Security
South Australia Police is set for a boost to its powers under proposed laws introduced on Thursday in Adelaide, which would enable police officers to compel passwords and biometrics from suspects.
The proposed laws would apply in cases of indictable offences or where a maximum penalty of over two years applies, following court approval.
"Our laws need to keep pace with technology, which is why there are now specific provisions that will allow investigators to seek approval from the Magistrates Court to compel people to provide information to access encrypted material," South Australian Attorney-General Vickie Chapman said.
-----
  • Updated Nov 5 2018 at 12:15 AM

No Netflix moment in the world of healthcare disrupters

Australian healthcare companies have so far eluded the equivalent of upstart outfits such as Netflix and Uber, which have shaken up business models in the entertainment and taxi industries respectively. And unlike the financial services sector, there are no hordes of start-ups lining up to grab a slice of the incumbents' profits.
So far, the biggest disrupter to healthcare has been Google, which has allowed people to self-diagnose and become more informed than ever before about their health. The other major disrupter is social media, as people have flocked online to share experiences and rate doctors.
According to a CSIRO report, titled Future of Health, the transition to a more holistic, preventive and consumer-empowered health system presents a challenge. "This shift will require a change in the way consumers share their personal data and how they trust next-generation medical platforms. It will also require the modification of existing businesss models, which may damage short-term profitability," the report says.
-----
  • Updated Nov 5 2018 at 10:15 AM

Thrivor app puts healthcare at patients' fingertips

by Carrie LaFrenz
At 40, Justin McLean had a successful career working for a big-four accounting firm, a happy family life and a deep interest in road cycling. Then he was diagnosed with colorectal cancer and his world changed.
After 13 months of treatment he came up with the idea of an app that connects patients and hospitals, and provides practical patient support.
Thrivor, launched last year, was initially funded by McLean and a wealthy individual to the tune of about $1 million. It is in the middle of raising a further $2 million from investors.
-----

Patient dominance in healthcare imminent, says Qld ehealth chief

James Chalmers | 08 Nov 2018
Healthcare will be entirely reorganised around patients in as soon as a decade, one of Australia’s foremost digital health leaders has told a Brisbane conference.
In opening remarks at the HIMSS AsiaPac18 conference in Brisbane on Tuesday, eHealth Queensland CEO and CIO Dr Richard Ashby spoke of the provider-patient partnerships that are increasingly being seen in healthcare systems are simply a transitional state.
“Within 10 to 15 years it won’t be a partnership – the consumer will be completely dominant in the relationship,” he said.
“It’s their healthcare and they are going to demand that they are actually in charge of it.
-----

TPG top of the pops in ACCC's third broadband speed test

Fixed-line NBN customers are benefitting from competition among Internet service providers to perform well in the ACCC's speed tests, though some consumers continue to get much lower speeds than others on the same plan.
The ACCC's third Measuring Broadband Australia report, released on Monday, shows that TPG Telecom was the fastest, followed by Aussie Broadband, iiNet, Optus, Telstra and MyRepublic.
Aussie Broadband took top spot in the second report, with TPG third, and iiNet, part of the TPG stable, second.
-----
  • Updated Nov 5 2018 at 10:28 AM

NBN Co accused of failing to take 5G threat seriously

by James Fernyhough
NBN Co has been accused of failing to take seriously the threat 5G is posing to its business model, after the groundbreaking technology received just a single mention in the company's 182-page annual report.
Currently in development but not commercially available, 5G is expected to revolutionise the speed and reliability of wireless internet, with many touting it as the first true competitor to fixed-line broadband.
Major telcos are pouring resources into building their own 5G networks, with the first commercial services expected to launch in 2019. 
-----

Broadband: Australia cheapest in Oceania, but 84th among 195 states

Australia may be the cheapest place for broadband in the Oceania region but it ranks a lowly 84 globally. The cheapest broadband packages in 195 countries surveyed by the UK's Cable.co.uk site was in Ukraine and cost US$5 per month. The most expensive was in Mauritania, cost US$768.16 – and was slow, at just 0.7Mbps.
The website said it had analysed 3303 fixed-line broadband deals in these 195 countries between 15 August and 20 September, with the assistance of international consumer insight consultancy BVA BDRC. (Full data can be seen here). In last year's survey, Iran was found to have the cheapest broadband.
Australia was the only country from the Oceania region to figure in the top 100 on costs, sneaking in at number 84 with packages that cost an average of US$52.77. Twelve countries were studied in the region.
-----
Enjoy!
David.

Sunday, November 11, 2018

Even The Experts Seem To Struggle With Key Issues Surrounding The #myHealthRecord - Updated

Here is an example of such commentary I have permission to republish: The original article paragraphs are indented.

Stephen Duckett, Director of the Health Program at Grattan Institute published an article:
“Case study: What can we learn from Australia’s My Health Record experience?”
Karl Auer who comments on such matters, responded to the article with an email to Stephen, copied to a privacy list and his response is published with permission and the following disclaimer:
"This is a guest article; the author does not necessarily agree with other opinions expressed on this blog site."

Hullo Stephen.
Some feedback on your article, found here:
“Facing public distrust over data > privacy, what can the program tell us about the opportunities and  challenges of implementing an electronic health record in a complex > healthcare market?”
"Facing public distrust" suggests that the public has it wrong, or that the Government has simply failed to convince the public. It is WAY more than that.
The MHR system, used as it is designed to be used, has no effective privacy protections at all. The supposed protections are a nonsense.
This is not an academic fear, an irrational response or a political position, this is actual technical fact. If you would like more info on exactly why, feel free to ask.
Distrust is not a sufficiently strong response; rejection would be more appropriate.
“The benefits of electronic health records (EHRs) are clear”
No "benefit" is clear until it has been held up against the costs. Some costs and benefits are emergent properties. The benefits and costs of a system depend completely on the actual characteristics of that particular system.
By way of analogy "the benefits of high speed personal travel are clear" but would we have been so quick to adopt the motor car if we had seen the millions of lives it takes (or ruins) every year? Or the amount of land given over to roads and parking? Or the pollution they brought? None of those costs has much to do with personal travel, but they are costs just the same.
“Many patients resent having to repeat their history to every healthcare professional they see. Money is wasted in duplicating diagnostic tests performed before hospital admission that are then repeated on admission, or where the results are not available when required. Emergency care can be compromised due to lack of accessible information.”
Not a single one of the circumstances you mention will be usefully addressed by the My Health Record system. Details are uploaded by medical people after the fact, usually well after the fact. Most stuff uploaded will be delayed, most uploads are summaries. Many health professionals will not upload anything. Many citizens will not be in the system. Many citizens will prevent medical professionals uploading certain information (as it is their right to do).
The material available in th MHR system will NOT be detailed, up-to-the  minute information. No competent health professional will risk your life on it or waste their time on it; you will be repeating your medical history to a lot of doctors and nurses yet.
“Digitization can also provide a platform for further enhancements in care delivery, including implementation of evidence-based electronic care paths between primary and secondary (hospital) care, built on improved transfer of information between different healthcare teams.”
This may be true for digitisation generally but it's pretty much a nonsense as far as the MHR is concerned. Using the MHR as an information sharing mechanism would be extraordinarily clunky. Directly sharing information obtained from MHR, without first obtaining the patient's informed consent about what information was being given to whom, would be breaching that patient's privacy.
“Patient engagement in his or her own care can also be improved through EHRs, potentially enhancing health literacy. Decision-support  systems and artificial intelligence – which could improve safety and patient outcomes – could also be applied to an EHR in a way that would be impossible with current paper-based systems.”
The first is a very dubious idea, but you never know. As to the rest: The MHR system does not store information in a way that is accessible to automated processing. Most of the documents are and will be PDFs. Many will include handwritten sections.
You've used a motherhood-and-apple-pie phrase, "improve safety and patient outcomes", without providing any real information as to what those are in practice and how specifically the MHR (or any digital system) will bring them about.
Such applications require unfettered sharing of highly personal data. That means they come with *risks* to patients' "safety and outcomes", even if those risks and outcomes are not in the emergency room, the operating theatre or the hospital ward.
“Australia’s ambitious journey to a national, personally-controlled, EHR started a decade ago with a recommendation from a ‘national reform commission’. Dubbed My Health Record, the project is bold in its vision, but has hit several stumbling blocks in the implementation stage that are instructive to other countries looking to develop similar systems.”
"Stumbling blocks"? The phrase implies the issues are trivial. Hopefully by now you are getting the message that problems of the MHR system are anything but trivial. These are not teething problems to be waited out or resolved with a tweak here and there.
MHR is stunted and limited in its vision. A federated system of information islands would have avoided almost every major fault in the current system AND been up-to-date by design.
People have been telling successive Governments this for literally decades, only to be persistently ignored.
A massive centralised database is *so* much easier to understand, not to mention saleable and useful in so many ways completely unrelated to health. Why, in the MHR legislation, is there specific provision for making the data available to commercial entities, Government agencies and law enforcement? What has that got to to with health?
Forgive my cynicism, but when a good way of achieving an objective is persistently ignored in favour of a much, much worse way that coincidentally is a really good way to achieve a bunch of other unrelated things, the suspicion must arise that the real objective has not been shared.
MHR certainly *should* be instructive to other countries - a clear example of how not to do it. It is just a pity that our country did not look at what other countries had done before we went down the same path as the UK, with a system almost indistinguishable from the one they implemented and discarded.
As to being "personally controlled", that is almost completely untrue. Let me detail the ways in which your MHR record is NOT personally controlled:
- it is opt-out. The vast majority of people ending up in the system will not have consciously consented to being in it. Nor, typically, will the very young, the very old, the very vulnerable and the less educated.
- you cannot opt out after November 15 this year.
- if you don't opt out, your future ability is limited to "cancelling" your record. This makes it unavailable as a health record, but it remains in the system and very much available to the system operators, and thus to Government agencies, commercial interests and law enforcement.
- you cannot remove documents that you have uploaded (with a few exceptions). You can only upload corrected versions.
- you cannot remove documents uploaded by someone else (with a few exceptions).
- you cannot edit or replace documents uploaded by someone else.
- you cannot tell who has seen your record
- you cannot prevent people accessing your record (there is a PIN system, but it is per document and the default is "no PIN"). The PIN system does not apply to access by government agencies or law enforcement, who will have unfettered, warrantless access to all your health data. Greg Hunt has promised to add some restrictions, but it's just a promise at this point. And some of his promises seem unlikely to be achievable, such as the complete deletion of a record.
- the legislation has sanctions against misuse of data in the system, but offers no protection to the data once it has left the system. So a document downloaded by (say) a doctor's receptionist and stored in the doctor's system thereafter completely evades the sanctions provided in the legislation.
- other people can opt you in *even after you opt out*
“EHRs could offer big potential gains for Australia’s healthcare industry, with promises of substantial savings, better care and improved convenience”
You say that as if it is obvious, but it is not obvious at all. It depends utterly on the nature of the particular EHR. Your entire article talks about a fictional "EHR", but in ways that make it sound as if you are describing the actual MHR. The actual MHR we now face is not your fictional idealised one at all.
“Precisely because of this complexity, EHRs could offer big potential gains for Australia’s healthcare industry, with promises of substantial savings, better care and improved convenience.”
Again - it is not obvious at all that the MHR system, or any other system, would bring such benefits, nor is it at all obvious what the costs would be if they did. And by costs I do not mean just dollars.
“The initial EHR design was strong on personal autonomy: consumers would have personal control over what was in their record.”
That has never been the case, if you mean the MHR. There has never been a real thing called "the EHR". Perhaps you mean the PCEHR?
“Healthcare providers, especially medical practitioners, were skeptical about this model, arguing that they could not know whether key information was missing or deleted from the record.”
They will continue to not know! The MHR system does not in any way address that issue. Yet Greg Hunt and others continue to spruik the "emergency room scenario" as if MHR data will be relevant, complete, up-to-the minute and reliable. It is not, and with the current design can never be.
In fact, I am not sure it is even theoretically possible to have any health record system where that can be true. The provision of complete and up-to-date information in a system would be antithetical to personal control by the patient.
“and, most importantly, a change from user opt-in to opt-out. This is where the project started to encounter serious difficulties: the public had not been properly prepared for this shift, and was mistrustful of the EHR program, despite patient organizations and many HCPs promoting the potential benefits.”
So now EHR really does mean MHR?
I wonder what "proper preparation" you would think would be appropriate for MHR. I would have rather liked to see the actual legislation presented with honest costs and honest benefits, rather than half- truths (and frequent actual falsehoods) from various Government spokespeople.
In discussion with several doctors, nurses, receptionists I have been *appalled* at the almost complete lack of understanding of even the simplest aspects of how the MHR system is supposed to work, or of its benefits or its dangers.
(By the way, were you aware that the Government pays medical practices to enroll people in the MHR system - often, in fact usually, without the subjects' knowledge or consent?)
I am reasonably convinced that most health professionals who have promoted the MHR system (or its predecessors) have been touting what they thought it was, not what it actually was. Amazingly, I rather suspect that most Government people promoting the system are doing this too!
And sadly I have to say that you seem to be doing pretty much the same, though you are more discussing than touting.
“The big concern was privacy. The governing legislation – developed when My Health Record was an opt-in model – was relatively lax about releasing information, however this was no longer appropriate for a more wide-ranging opt-out-only public EHR,”
It wasn't ever appropriate. It was just marginally less damaging when people at least had the option of not participating, and when the default would protect people from their own ignorance.
It seems odd that you would suggest that being "relatively lax about releasing information" could ever be even remotely acceptable for medical information.
“In the meantime, Australia is lagging behind in EHR implementation. “
Lagging behind whom or what?
“HCPs still transmit information and data about patients by fax. “
Fax is point-to-point. It's difficult to intercept except at the endpoints, interception between the endpoints takes a lot of specialised knowledge, and no endpoint is a honeypot. The medium is not inherently copyable. Interception at the endpoint takes a significant amount of time and requires the physical presence of an attacker. Any attacker would be able to access relatively few records. Access would be expensive and slow with very high risk of discovery (unless the attacker was on staff in which case all communication methods are equally compromised), while for the legitimate user the rate of access is easily sufficient. So fax is actually not a bad means of transferring private data as long as the fax machines are not located in public spaces.
I'm not seriously suggesting a fax-based system. My point is just that things need to be considered for what they are. New is not necessarily better.
Your article is largely fact-free, vague, and devoid of any critical analysis of the actual flaws in the MHR. You used "EHR" sometimes to mean a fictional idealised system, and sometimes to refer to real systems, leading to a confusion between attributes of the fictional system and attributes of the PCEHR and the MHR systems.
For an article emanating from a largely respected organisation it was extremely disappointing.
The MHR is the health sector's NBN. It's a basically good idea that has been perverted to fit political and administrative ends rather than the practical ends it was supposed to serve. In both cases the architects of the system steadfastly refused to listen to competent technical advice. The results were systems that did not achieve their stated goals; both were completely predictable disasters, ludicrously expensive, and will just have to be discarded and done again.
Regards, Karl Auer.

Postscript 11.00 am Nov 12, 2018

Overnight I saw a response from Prof Duckett which I reproduce with his permission:

Thanks Karl
I did not think there was anything I said in the article which could have led you to believe that when I said 'Facing public distrust' I was suggesting the public got it wrong. It is not my view that the public's concerns were invalid.

You then go on to suggest that the examples I give of the benefits of My Health Record will not be addressed by the current design. Think of these scenarios: once uploaded allergies do not need to be re-entered every time, laboratory results and filled prescriptions can be a direct feed etc. I just do not agree with you here.

As to the rest of your points, I agree that there are a lot of improvements that still can and should be made to the My Health Record. The issue is surely whether you throw it away and start with a redesign, and I hinted in the article that I thought the current design is now a bit antiquated, or whether you modify the system as it goes along. My view is there are benefits, even with the current design, which should not be dismissed. We should be working to improve it.

Stephen

Stephen Duckett
Director, Health Program
Grattan Institute
 
D.

AusHealthIT Poll Number 448 – Results – 11th November, 2018.

Here are the results of the poll.

How Do You Rate The Quality And Value Of The ADHA's Recent Digital Health Evidence Review?

Excellent 0% (0)

OK 1% (1)

Pretty Amateurish 29% (42)

Hopeless 11% (16)

Useless Propaganda 59% (86)

I Have No Idea 0% (0)

Total votes: 145

Seems the ADHA are not very good at assembling a credible case for the myHR plans – only 1/145 thinking it was OK or better!

Any insights on the poll welcome as a comment, as usual.

A really, great turnout of votes!

It must have been a very easy question as 0/145 readers were not sure what the appropriate answer was.

Again, many, many thanks to all those that voted!

David.