This press release appeared a few days ago.
Media release - International review puts Australia ahead in personal control of electronic health records
30 October 2018: An international comparison review of digital health record systems shows My Health Record consumers in Australia have more ability to personally control their digital health information than in similar countries worldwide.
The Digital Health Evidence Review, released by the Australian Digital Health Agency, brings together studies comparing My Health Record with similar systems across the world, including those in France, the UK, the USA and New Zealand.
“We know through the important national conversation that is currently occurring that Australians expect and deserve strong safeguards, choice and control when it comes to their personal information,” says Agency Chief Medical Adviser, Professor Meredith Makeham.
“As the Agency responsible for My Health Record, we need to continue to improve the system in consultation with the Australian community and their healthcare providers.”
With the Australian My Health Record system, people have among the most choice in how their medical information, such as their tests and scans, are stored and accessed from an international perspective.
“Although many countries have laws that allow users to view their health information, only Australia and a handful of other countries have laws that allow citizens to control who sees their information and request corrections to their own health data,” says Makeham.
My Health Record is an online summary of a person’s key health information. It allows Australians to share their health information with doctors, hospitals and other healthcare providers from anywhere, at any time. They can control access to their My Health Record including what information gets uploaded and which family members, carers or healthcare providers have access.
Out of the 50 countries surveyed, the Digital Health Evidence Review found:
- Only Australia and France allow individuals to edit or author parts of their record
- Only 32 per cent of surveyed countries have legislation in place that allow individuals to request corrections to their data.
- Only 28 per cent of surveyed countries have legislation that allows individuals to specify which healthcare providers can access their data.
“This review demonstrates the My Health Record empowers consumers to personally control their information, including what’s in it and who can see it,” says Professor Makeham.
Research Australia CEO Nadia Levin has welcomed the review.
“There is great value in sharing information about the My Health Record system and similar digital platforms around the world. This information can support researchers, policy makers and the community in understanding the way personal health records can support better health outcomes and health system improvements, while considering the necessary controls required to build trust in such a system” Ms Levin says.
University of Melbourne Professor of Primary Care Research and General Practitioner Jane Gunn says she supports the development and ongoing review of clinical evidence, as it will drive improvements in the digital health system.
“Sharing evidence about the way My Health Record and similar international personal health records are used will support clinicians in understanding the benefits of shared health data.
“As a practicing GP I can see how My Health Record has the potential to inform better care coordination for my patients, and save valuable time searching for information we need to make safe clinical decisions,” says Professor Gunn.
Professor Meredith Makeham says the Review deepens our understanding of the way shared health records are being developed and implemented in Australia and internationally.
“We need to understand the strength of the current evidence supporting the use of personal health records, and where we see gaps in the evidence base.
“This is important to guide future efforts, working with the research community and others to build our knowledge and inform future digital health service development and investment,” Professor Makeham said.
The Review drew on a variety of research sources, including academic peer-reviewed literature, government reports and white papers, World Health Organization (WHO) data, and other information sourced from international governments and agencies responsible for the delivery of digital health services.
More than six million Australians already have a My Health Record and 13,956 healthcare professional organisations are connected. This includes general practices, hospitals, pharmacies, diagnostic imaging and pathology practices.
More information on My Health Record can be found at www.myhealthrecord.gov.au. People who do not want a My Health Record can opt out by visiting the My Health Record website or calling 1800 723 471 for phone-based assistance. Additional support is available to Aboriginal and Torres Strait Islanders, people from non‐English speaking backgrounds, people with limited digital literacy and those living in rural or remote regions.
The Digital Health Evidence Review can be accessed at www.digitalhealth.gov.au/evidence-review.
ENDS
Media contact
Australian Digital Health Agency Media Team
Mobile: 0428 772 421 Email: media@digitalhealth.gov.au
Australian Digital Health Agency Media Team
Mobile: 0428 772 421 Email: media@digitalhealth.gov.au
Here is the link:
Going to the site we find the following summary:
Key findings of this review are:
- My Health Record is a secure online summary of an individual’s health information that can be accessed, managed and shared with their healthcare providers. This is an example of a national implementation of a ‘personal health record’ (PHR).
- Portals are an extension of electronic health records (EHRs) that offer a way for healthcare providers to allow individuals online access to information in their EHR, typically controlled by the system from which the information is sourced.
- Internationally, implementations of systems similar to My Health Record that allow citizens access to their health information may be found in Austria, Denmark, Estonia, Finland, France, Norway and Sweden.
- My Health Record legislation allows an individual to request corrections to their data and specify which health related data is shared with the healthcare professionals of their choice. Australia is amongst the minority of WHO member states which has these rights for citizens.
- Legislation varies internationally regarding specified content, the need for patient consent, a patient’s right to access and the mandatory use of electronic health records and personal health records.
- The benefits that have been demonstrated internationally of providing people and clinicians with access to shared health information include improved patient safety and health outcomes through increased adherence to treatments, and health system efficiencies relating to time savings for clinicians, reduced unnecessary duplication of investigations and avoided hospital admissions.
Here is the link to the page:
What we get from all this is that in a wide range of diverse systems – none of which replicate what the myHealthRecord is and does there are maybe some unquantified benefits – most of which are unlikely to be realized from the present Australian system.
No-one globally has implemented what has now become a pretty much compulsory Personal Health Record (PHR) for its citizenry and the outcome of the initiative is unknown and unknowable!
When the big claim to fame is that patients have more control of their record than in any other nation and don’t provide evidence of the clinical and safety benefits the system offers (nor any useful usage and impact statistics) it is totally clear it is a useless fraud.
There are significant risks in all this and totally unproven benefits. The absurd emphasis on patient control of data and no discussion of value and benefits tells you all you need to know about the robustness of the ADHA claims! Just what is this system REALLY for that they would spend so much on so little evidence?
What a horrible joke.
David.
I think the compiler(s) of this report should be commended. To selectively extract evidence, then bend and twist to met Tim Kelsey’s demented view of the world in his pursuit to prove care.data could have been a success if only his bosses had stood firm and not swapped the Brownshirt he had had fitted for them.
ReplyDeleteHaving seen this person in action at the ADHA I can guarantee a lot of “evidence has been omitted” and that many many edits were done.
This paper and the dangers in the ADHA work are a result of a combination of high pressure, high competitiveness, unclear directions and expectations, high staff turn-over, politics and cults of personality. The witch hunts and persecution over the last few years of highly talented people with fact based opinions make ADHA (in my mind) a psychologically unsafe place to work.
• The enormous pressure to prove oneself and deliver coupled with lack of clarity and absence of solid leadership, direction and objectives around *what* to deliver lead very rapidly to fatigue, burn-out, impostor syndrome, bullying, aggression and the like.
Does this sound like the foundations to builds a clinically safe interoperable health system?
Just a reminder for all out there- the ground-breaking Tasmanian school health clinic, is to close its doors on Friday after ten years helping teenagers with sexual health and mental health complaints. Thanks Minister Hunt, thanks ADHA, you did not put these in your reports.
ReplyDeleteWhoaaaa! I read that report and a weird feeling came over me, I fell into a vortex of wonder and enlightenment, and now I believe! Oh yes I DO BELIEVE!
ReplyDelete@9:43 PM. Agree, it has me questioning my view the earth is a sphere, maybe the flat earth era are right and we are blind to the evidence before us. Wonder if Tim climbs a mountain and gets passed these fantastic facts and organisational values?
ReplyDeleteLooking at this review in a bit more detail, my conclusions are:
ReplyDeleteThe French system is the only comparable one - i.e. they are the only ones that permit individuals to edit or author parts of their record. It is intended to be a complete medical record, not a summary system and is potentially more useful than the myhr. After 14 years it is not widely accepted or used.
For the ADHA to hold up the myhr and the French DMP as world leading and to claim that Australia and France are being innovative and are transforming their health systems is a gross distortion of reality.
Here's the details:
The ADHA claims that internationally “advanced levels of editing in EHRs is limited. In one recent study comparing European countries to Australia and New Zealand, only Australia and France allowed individuals to edit or author parts of their record but over half the included countries allowed individuals to restrict access to specific information.”
https://www.digitalhealth.gov.au/get-started-with-digital-health/digital-health-evidence-review/use-of-digital-health-records-by-individuals
There’s some more information on that page about the French system:
“* An opt-in participation model for record creation.
* 1.9% opt-in or 1.25 million records created (July 2018) from target population of 66 million.
* Citizens can author or edit parts of their record and restrict access to documents.
* National redeployment is planned for October 2018.”
So, the only real comparison with myhr is the French system. How well have they been doing?
There’s some detail here about adoption:
"Initially called the ‘dossier médical personnel’ (DMP), the PHR in France has been designed for individuals who have government health insurance in their own name (i.e. no DMP for children or non-working spouses), equating to approximately 38 million or 57% of the total population. From 2010, healthcare professionals and especially GPs were encouraged to create a DMP in order to improve the continuity of care for patients. It was projected that by the end of the third year, 9 million or 23% of the target population would have a DMP. Five years after launch of the DMP, there were an estimated 570,000 DMPs equating to 1.5% of the target population (as of December 2015).
On the recommendations of a national working group piloted by the French Ministry of Health, a new French Health Act was published in 2016 including a special article to support the relaunch of the DMP. The DMP became ‘dossier medical partagé’ (with ‘partagé’ for shared) and was presented as the medical record for the coordination of care.
Following the publication of the 2016 French Health Act, the DMP project was piloted by the government health insurance. New functionalities have been developed, including the creation of DMPs by patients or at national insurance offices, as well as the creation of DMPs for all individuals covered by the government health insurance (including children and non-working spouses, increasing the target population to more than 66 million), the release of a moble app for patients to access their DMP, and the automatic population of DMPs with data from insurance claims to avoid empty DMPs. In addition, incentives have been implemented at a national level to encourage hospitals and biology laboratories to push discharge summaries, resp. biological test results into DMPs. However, the opt-in model requested by patient associations remains in operation.
The new DMP has been tested in nine French counties where in one year, more than 500,000 DMPs have been created. In July 2018, there were 1,275,000 DMPs and the national deployment of the new DMP is planned for October 2018."
Just to clarify, 1,275,000 DMPs is a creation rate of 3.4%. Since 2004. (See here for a history )
Talking about evidence, whatever happened to this study, which was supposed to put out an interim report in June this year? A search of ADHA's site for "Emergency Departments" returns nothing relevant, other than the source for this article.
ReplyDeleteEmergency department pilot for My Health Record to promote hospital uptake
HealthCareIT
Lynne Minion | 28 Jul 2017
https://www.healthcareit.com.au/article/emergency-department-pilot-my-health-record-promote-hospital-uptake
Hospital emergency departments in NSW and Queensland will be using the My Health Record to access health information fast in urgent medical cases as part of a pilot program announced this week.
Emergency clinicians will be able to get details on patients’ allergies and the medicines they take as part of the project being run by the Australian Digital Health Agency in partnership with the Australian Commission on Safety and Quality in Health Care.
Designed to help drive the uptake of My Health Record in hospitals, the pilot will also lead to improved safety and quality of patient care.
“Where My Health Record is being utilised, we are seeing reductions in duplicated testing and lower hospital readmission rates,” Australian Digital Health Agency CEO Tim Kelsey said.
“However, we need to identify potential barriers to the uptake of My Health Record in hospitals, and enable better integration with primary and secondary healthcare providers.”
More than 5 million people now have a My Health Record and over 10,000 healthcare providers are connected.
Urgent access to medical records can be lifesaving in an emergency, Commission CEO Adjunct Professor Debora Picone said.
“It is time-consuming for hospital staff to gain information on the patient’s medicines, what their GP has been doing to manage the condition, and the procedures provided by other hospitals. This time could be better used treating the patient,” Picone said.
The pilot is based on trials conducted in emergency departments by the NSW Nepean Blue Mountains and Northern Queensland Primary Health Networks.
To be led by a senior emergency department clinician and overseen by ADHA, the Commission, NSW Health and Queensland Health, as well as consumer and clinical representatives, the pilot is expected to take two years with an interim report due in June 2018.
Well picked up Bernard. You could surmise that it did not go to well and to release negative evidence might not play to well into Tim’s safe seamless and secret harvesting on your personal data.
ReplyDeleteApart from the government/ADHA spin and their lies about the benefits of the MyHR, there are several other issues worth considering, that relate to security and doctor uptake of this silly system.
ReplyDeleteHaving worked as a division IT Officer for 8 years and provided IT services to practices for a further 11 years, it is clear to me that there is a health IT security no-win situation to which MyHR adds further risk.
Digital security remains extremely basic in most practices. Improving it is impeded by the absence of mandatory requirements. A good set of guidelines was released by the RACGP in 2013, but they are linked to GP accreditation, and have been dumbed down to the point of uselessness by the accreditation organisations.
Does MyHR participation by practices require adherence to these guidelines? If so, I've not heard about it. Perhaps that might further discourage participation?
These guidelines don't even seem to exist in specialist practices, where e-mailing clinical information without encryption has become increasingly common practice.
How useful is an encrypted link for uploads from practice to ADHA, if the practice itself can be accessed unlawfully?
If you have ever had to work with the ADHA, they way in which they manage and distribute information should be enough confirm these people running ADHA have no idea about data and information or even seem to care.
ReplyDelete@12:25 PM, you know I had become a tuned to the sloppiness of ADHA, but you are absolutely correct.
ReplyDeleteThe problem is they are still talking about "..will..", "..going to be..", "..expect..", and "..could.." and many other future vagaries in their evidence, case studies and promotions. They have no idea of the real benefits compared to costs, averaged per 1000 patient accounts based on real patients. I don't want guesses, I want facts.
ReplyDeleteBTW: My IT background would simply describe a "record" as "a single row in a table" not these collections of semi-related blobs for each patient account.
My personal "MyHR" collection is incomplete, inaccurate and largely inconsequential. Another doctor or hospital could not use such a collection of my inadequate MyHR data to populate their "New Patient questionnaires" and it's not a reliable messaging system. I know this from experience of 3 hospital admissions, 3 new specialists and 1 new GP. It would be closer to 95% of the questions which cannot be reliably answered from my personal MyHR collection. I've had test results (non-pathology) that cannot be uploaded and even the written reports have had missing or inaccurate text (why upload nonsense? in the future and rely on it). The magical pot of benefits cannot be found at the end of their delusional rainbow.
We are still waiting to hear how many Billions have been saved by this system over the last 6 years. Or 100's of millions ... I'll lower the bar to 10 million ... nothing. They say they need more patients signed up and greater use, but the savings should have been noticed by now. With more than 20% registered after the trial opt-out we should be seeing 20% of the potential benefits. I've not heard of any real budget savings from any hospital or government agency attributed to the use of the MyHR system and increased registrations.
I suppose some uses could have been achieved with access to the existing Medicare data without the creation of MyHR ie. remove them from your list of MyHR benefits. The MyHR system is not the magic bullet we've been waiting for.
~~~~ Mark
I full support what Mark has said (November 08, 2018 12:18 AM).
ReplyDeleteI'd also like to suggest that if myhr really can deliver significant medical benefits, as claimed by the government, their paid advocates and those with a vested interest, but few others, the system should be treated in exactly the same way as any other medical procedure, protocol or treatment. It should be subjected to independent scrutiny and assessment to identify the benefits, costs and risks.
The announced but never reported on Emergency Department tests do not count, neither do the test bed projects all of which are neither independent not appropriate in scope. The test bed projects are explicitly designed to identify benefits and are not intended to address or cover costs and/or risks.
The government should stop treating itself as some sort of privileged player in the health care industry and obey the same rules as everyone else.
The extraordinary claims made by the project managers and bureaucrats in their clean, antiseptic offices need extraordinary evidence or, to use the vernacular, they should put up or shut up.
The minister was claiming MyHR will save lives in emergency situations on TV this morning. This reinforces the need to make public the finding from the ER study Bernard raised the other day. There is no evidence the MyHR would be anymore useful than my MediTracker app or indeed my health app on my iPhone that can be access even when by phone is locked. Not advertising Apple products, just do not have an android phone.
ReplyDelete@ Bernard 8:38 AM. It is my observation that despite a decade of incredibly sensible, valid, perceptive, comments made by many well-qualified readers on this blog since it first began, many of whom, as well respected leaders in the industry, have been prepared to attach their names to their comments, little or no attention / coverage has been given to such comments.
ReplyDeletePerhaps the comments have been too hard to find retrospectively. As an engineering colleague once commented "they are gold, pure gold".
This is an indictment on those who put themselves forward as investigative health IT journalists.
With all due respect to the excellent work that they do, they (Sue Dunlevy and Pulse IT's Kate MacDonald in particular) would surely win a major journalistic award if they did undertake such an investigation.
We can only hope they will see the merits of doing so and have the time and energy.
Interesting there is nothing about Israel in this report. What they are piloting at the moment is most interesting, or could it be that it is beyond ADHA ability to grasp or just again provides evidence of how embarrassing Tim’s PDF collection really is.
ReplyDeleteNor MedMij, from Netherlands, which is particularly relevant. In fact, very countries are covered
ReplyDeleteThis is why - https://www.gdhp.org/whos-involved
ReplyDeleteWhat is hidden is the big consultancies behind this.
https://www.opendemocracy.net/ournhs/tamasin-cave/tim-telstra-and-tech-takeover-of-nhs
From the Guardian online this morning -
ReplyDeleteThe health minister, Greg Hunt, and the Australian Digital Health Agency have refused to give an update on how many Australians have opted out of the My Health Record system. - End Extract.
If this is true and there little reason to doubt that it is. Then this is an attack on our democracy and basic rights.
@ 10:11 PM Nov 8. There are certainly some members of the global partnership with questionable human rights agenda’s. I also believe there are some questions that need answering. Has health IT become corrupt? Certainly looks like a case to be answered IMHO.
ReplyDeleteGreg Hunt, Health Minister yesterday announced there will be harsher penalties for those who misuse the system. So will Tim Kelsey, Bettina McMahon and Ronan O’Conner be pursued through the courts?
ReplyDeleteAt the very least they should be sacked for incompetence.
Reports of lengthy telephone wait times and a systems crash on the hotline suggest that a high volume of people are opting out in the final weeks before 15 November. Both Hunt and the ADHA refused to provide an updated figure.
ReplyDelete“The ADHA will not be providing any statistics on opt-out until after the opt-out period has closed on 15 November, and following the reconciliation period for the processing of paper forms arriving by mail,” an ADHA spokesman said.
The story going around Liverpool street is that optout is reaching an embarrassing number. Call centre is being reduced in an attempt to discourage people from opting out and the online portal software is unable to process the volume of submissions comming through.
I cannot see the PM budging Peter Dutton and Greg Hunt so instead is hiding in bush somewhere.
Talking of ScoMo, he's starting to make The Trump look rational:
ReplyDeletehttps://www.buzzfeed.com/joshtaylor/please-enjoy-the-prime-minister-explaining-why-he-is
JOURNALIST: Prime Minister, you’re on the bus tour. Why are you flying?
PRIME MINISTER: Well the bus is going all the way up to Rockie and that’s
where it was always planning to go. I mean, it’s a big state and I need to
cover as much of it in four days as I can. So we were never planning to
take the bus to Townsville, we’d always planned to take that last leg up
to Townsville by plane because that was the most effective way to get
there and to spend the most time there with people on the ground. I mean,
these visits aren’t about sitting on a bus. They’re about actually engaging
with small businesses and our supporters and the people of Queensland and
listening to them.
JOURNALIST: Then why have the bus?
PRIME MINISTER: Because it gets me from A to B.
JOURNALIST: Will you be taking the bus to Rockhampton from here?
PRIME MINISTER: Yes. The bus will be going to Rockhampton from here.
That’s right.
JOURNALIST: With you on it?
PRIME MINISTER: I’ve got to get there earlier than the bus tonight.
JOURNALIST: So you will be flying to Rockhampton?
PRIME MINISTER: I’ll get into Rockhampton tonight and I’ve got a programme
tonight in Rockhampton and the bus can’t get me there quick enough so I’ve
got to fly.
JOURNALIST: So you’ll be flying to Rockhampton and the bus will catch up
with you and then you’ll fly onto Townsville?
PRIME MINISTER: I’ll be flying onto Townsville. And your point is what?
JOURNALIST: I’m just interested in the point of the bus if you’re not on
it.
PRIME MINISTER: I am on it, I just got off it.
JOURNALIST: But not onto Rockhampton or Townsville?
PRIME MINISTER: Yeah well it’s a practical thing. I want to spend as much
time on the ground with Queenslanders, and when I can be on the bus and go
from place to place on the bus, that’s great. But I’m not going to sacrifice
time with Queenslanders, listening to them and hearing them and talking to
them about what’s important to them just to satisfy the media’s interest in
the timetable for the bus.
Why not take a bunch of locals on the bus with him? Would seem a great use of downtime and a real oppertunity to have a proper chat.
ReplyDelete@November 08, 2018 10:11 PM
ReplyDeleteThe there's this. Sound familiar?
How NHS privatisers try to dupe us with revolutionary new buzzwords
https://www.opendemocracy.net/ournhs/steven-carne/how-nhs-privatisers-try-to-dupe-us-with-revolutionary-new-buzzwords
The government's NHS policy seems to be based on Theodore Roosevelt's dictum, "If you can't convince them, then confuse them".
I don't get why Hunt, Dutton and the rest on the LNP right are so keen to push through MHR - seems it would be against their ideology of small government and pro industry.
ReplyDeleteUnless of course, the goal is to flub MHR so badly that the idea of the private sector filling the space instead becomes palatable to the public.
Opt-out wait times may vary a lot...
ReplyDelete------
As at 6:00pm (AEST) on Wednesday 7 November 2018, average call wait times are:
• Enquiries about opt-out: 20 minutes
• Complex enquiries: 7 minutes
As at 4:00pm (AEDT) on Friday 9 November 2018, average call wait times are:
• Enquiries about opt-out: 1 minute
• Complex enquiries: less than 1 minute
Source: https://www.myhealthrecord.gov.au/support/help-line-updates
Note that these are not the opt-out line they are the help lines.
ReplyDelete1800 723 471 (select option 1) is the general inquiries number.