It really has been one of those weeks.
First we had this release pop up from the AMA.
The Bartone Ultimatum: – “Fix The My Health Record”
09 Aug 2018
During a private twilight meeting in Melbourne three weeks ago, AMA President, Dr Tony Bartone, put a strong demand directly to Health Minister Greg Hunt – fix the privacy provisions of the legislation or the My Health Record (MyHR) will remain in limbo for years to come.
Dr Bartone had made public his intentions a week earlier at the National Press Club in Canberra when he declared to journalists that he would do ‘whatever it takes’ to force the Government to take action to make the privacy protections of health information as watertight as possible in the digital health age.
The new AMA President stayed true to his word.
With the blessing and support of the AMA Federal Council, Dr Bartone, a Melbourne GP, took a four-point shopping list to the Minister – amend the Act to ensure health data is not disclosed without a warrant or court order; ensure that people who opt-out do not end up with a permanent MyHR; run a public information campaign; and extend the opt-out period.
The Minister, wanting the controversy to end, and ultimately wanting the MyHR to succeed, agreed to all the items and, after obtaining a sign-off from the Prime Minister, he issued a media release to publicly confirm the actions to be taken.
Minister Hunt said the Government will strengthen privacy provisions under the My Health Record Act, and the legislation will be strengthened to match the existing Australian Digital Health Agency (ADHA) policy.
“This policy requires a court order to release any My Health Record information without consent,” Minister Hunt said.
“The amendment will ensure no record can be released to police or government agencies, for any purpose, without a court order.”
Dr Bartone told ABC Radio AM that “we can now move forward and have certainty around the protections to the privacy of those medical records that our patients expect when they confide their information with us”.
“The assurance that people who opt-out will have their records deleted will hopefully appease concerns in that area,” Dr Bartone said.
“The privacy protection of our records and the security protection of our records is of considerable and paramount importance to us.
“We have protocols and procedures in place. We work with our IT providers to ensure that everything is in compliance and in the utmost preparedness for any cyber attack that we can envisage,” Dr Bartone said.
The AMA will examine the amended legislation carefully to ensure that patient, community, and professional concerns are addressed satisfactorily.
Dr Bartone said that the AMA remains committed to the potential clinical benefits of an electronic health record, but the future of the record depends on getting the security and privacy settings right.
“It would be a tragedy if, after more than a decade of development, we have to go back to square one in building a secure and workable electronic health record.”
Despite Minister Hunt’s announcement, the Labor Opposition is calling for the My Health Record system to be suspended until privacy concerns can be allayed.
Shadow Health Minister, Catherine King, raised concerns that non- custodial parents could create records for their children and use them to locate their children and estranged partners.
“The Government needs to deal with this issue,” Ms King said.
Here is the link:
Talk about self-aggrandizing clap-trap.
This claims that with the universal agreement of an AMA Council (those who has let this omnishambles run on uncritically for six years) he has arranged that all the issues surrounding the myHR were going to be fully addressed and that the bemused and confused populace could now nod off back to sleep, and I simply don't believe that to be true.
I think it is also fair to say earlier AMA Presidents don’t quite see it that way with one putting it thus and suggesting much more is needed:
This provides a flavor:
AMA 'monumentally' wrong to back My Health Record: Professor Kerryn Phelps
The AMA and RACGP should have been less enthusiastic before offering their 'breathless support', she says
9th August 2018
The AMA and RACGP’s public support for My Health Record has been a monumentally bad idea, says former AMA president Dr Kerryn Phelps.
Her comments follow Minister for Health Greg Hunt’s promise to redraft the legislation so that clinical records on the system are covered by the same legal protections as those held by doctors.
Under the current My Health Record Act (2012), the Australian Digital Health Agency can hand over a patient’s medical records to law enforcers and government agencies without a warrant, providing it “reasonably believes” the request is necessary to prevent a law being breached.
But Dr Phelps said the slack privacy protections showed it was a “monumentally bad idea” for the AMA and RACGP to pledge support for the billion-dollar system in the controversial compacts signed with the Federal Government last year.
Lots more here:
Then we had these concerns raised:
My Health Record can store genomic data but critics say it's not ready
Esther Han 6 August 2018 — 12:01am
The federal government's My Health Record system is capable of storing genomic information, such as a person's genetic risk of developing cancer, which could turbocharge medical research but has intensified privacy and security fears.
Fairfax Media can reveal Sydney-based whole genome sequencing company Genome.One developed “necessary infrastructure” in order to upload highly sensitive genomic information onto My Health Records.
The Australian Digital Health Agency (ADHA), which for weeks has been deflecting privacy and data security concerns, handed the for-profit company $40,000 in September last year to support the development of the software.
Genome.One, a wholly-owned subsidiary of The Garvan Institute of Medical Research, can sequence an individual's entire genetic information and identify genetic variations which may increase the chances of developing a particular disease.
More here:
Only to have, within moments, a rebuttal appear from the RACGP.
Expert pours cold water on My Health Record genomics fears
Doug Hendrie 6/08/2018 3:28:14 PM
An RACGP e-health expert has poured cold water on fears that genomic data will not be safe if uploaded to My Health Record.
Chair of the RACGP Expert Committee – eHealth and Practice Services (REC–eHPS) Dr Nathan Pinskier believes recent reports that genomic data would be uploaded to the government’s health data repository should not trigger concerns.
‘[Genomic data] is the same as other pathology tests. It goes to My Health Record based on consent. They’re not uploading the DNA, but just a summary of findings,’ Dr Pinskier said.
‘Consumers have control. They can upload or not upload – it’s up to them. If they want to remove the data afterwards, they can.
‘I’d argue a consumer would like a place to keep this information, rather than having to go back to the laboratory all the time.’
More here:
More considered views appeared more slowly.
The troubling implications of My Health Record's genetic info plans
By Wendy Bonython
8 August 2018 — 12:00am
It is not surprising there are plans to include genetic information, in the form of genomic pathology reports, in My Health records.
Precision medicine – using insights obtained from genomics and other "big data" analysis – enables treatment and prevention strategies to be customised, potentially revolutionising healthcare. The government has committed financially to precision medicine. Genomic pathology testing is an increasingly important tool in the diagnostic arsenal. The inclusion of genomic testing results in the My Health record is consistent with inclusion of other pathology test results, increasing the amount of clinically useful information available to healthcare providers in My Health, but also contributing to a valuable research dataset.
But genetic pathology test results are fundamentally different from other pathology results. The shared nature of genetic material – received by individuals, along with their siblings, from their parents, and in turn transmitted to their children – means that information about the genetics of a patient necessarily reveals, or allows educated inferences about, the genetics of other people not the subject of the My Health Record.
Lots more here:
Her bio:
Dr Wendy Bonython is an associate professor in the School of Law and Justice at the University of Canberra. She has a PhD in Molecular Medicine, and post graduate qualifications in law. She researches in regulation and ethics of biotechnology law.
This is rather better informed than a GP from a group spruiking the myHR. It clearly warns care was needed. As someone with biological science and medical degrees I know who I am likely to take notice of. You really do have to pick your experts very carefully these days or become very confused!
Loath though I am to say it, overall the information campaign being run by the ADHA is looking more and more like fake and distorted news as every day goes by. They have been caught out and now seem to be flailing about with increasing angst and less concern for the precise truth.
You should be able to rely on these medical entities (among others) and the ADHA to be fully informed, reliable, trustworthy and unbiased. I don’t think I am seeing that. What do you think?
David.
Welcome to the era of Post Modernism where generic management think they can somehow manage things they do not understand and free and frank discussion is more than unwelcome, its actively put down.
ReplyDeleteI have worked on enabling clinical eHealth virtually every day for the last 20 years and written 10s of standards/technical reports and felt the need to delve deeply into the IT side of the equation, mainly because I was (a) interested and (b) was sick of hearing it could not be done. Of late the quality of even HL7V2 from major labs has declined, with no willingness to fix what could cause serious patient safety issues. The major labs had people who wrote the initial Australian standards, but they are all gone and with a few exceptions do not actively contribute to developing the standards they use. Their management has also become generic and does not understand the risk they are putting patients in.
When Health connect was young they at least had aims of atomic data, but felt they would reinvent every wheel and eventually all the square wheels fell off. NEHTA 1 and 2 continued to assume that they could solve the problem by coming up with something new and they both realized to late that they were wrong and it really is a wicked problem. ADHA appear to mostly be a PR machine with multi-million $ contracts with consulting firms that push their very average solutions, that were done somewhere else and have no track record of anything like real usefulness. No one seems to want to put anyone with technical knowledge in change of anything, because they are difficult and keep carrying on about techo stuff.
The AMA & RACGP seem to assume that these $Billion federal agencies must have expertise so sort of go along without actually understanding any of the low level issues, and have not called on any people within their organisations with real technical knowledge (If they exist) to actually look at anything in depth. They make important sounding announcements have reached deals to allow the laws of physics to be relaxed for long enough to make it work, but alas it does not. eHealth in Australia is a Cargo Cult 80% of the way down and the bottom 20% are not welcome to express their opinion. This is similar to the problems experience by NASA when management became a monster and the comment there from Richard Feynman was "Reality must take precedence over public relations, for nature cannot be fooled." Well the AMA and RACGP can be fooled, and the Royle report was totally lacking in the expertise needed to examine what was going on.
I have had the pleasure of being threatened by several iterations of these agencies that unless I did what they wanted they would do it themselves, which was a little aggressive on their part but I knew they did not even understand the problem and their solutions could not work, and they had no hope of actually developing a solution, so these days I push back at this nonsense.
I guess the point of this rant is to say that a senate inquiry has virtually no hope of sorting this out because it will be done by senators that also don't understand the problem. Lets hope they actually have the political nous to spot Hubris and and unmitigated $2Billion black hole that is impossible to climb out of and needs to be filled in and covered with concrete to stop the toxic waste leaking out.
It certainly is a joke David. The ADHA has lost and not replaced several senior executives. Those that are left are out of ideas and out of their league. It is quite clear operationally the ADHA is a mess and never quite became anything of value. That alone should be reason enough to halt it. The adoption of military strength security is another sign their ‘work leading cyber centre’ is run by clowns.
ReplyDeleteTime to dismantle the ADHA CEO, COO, Executive General Manager and General Managers and get some clinical and informatics leadership in place.
This Tim Kelsey chap has a lot to answer for. Well over a million is salary for this outcome? The damage caused and reputations damaged is quite shocking.
ReplyDelete@9:48 PM. Rant or not, that really highlights a growing problem. Even the ADHA sacked their standards team and seem to care little about standards or even there own specifications with most no longer being updated and still require known fixes to be made and improvements made to mitigate conflicting guidance and misalignment.
ReplyDeletePerhaps creating a Federal Agency was not the best approach, they will become more and more reclusive as they are barricaded behind all those constraints that come with government. I am sure there is now an army of security, policy, procurement and HR commissars running around.
Has anyone else noticed that information is disappearing from the two principle sites supposedly informing Australians about myhr?
ReplyDeletewww.digitalhealth.gov.au and www.myhealthrecord.gov.au
The Concept of operations document has gone, probably because the document said it would be updated and the system itself no longer looks like it was supposed to be.
Pages that explained that non-health professionals could access the system, that GPs had to put in significant effort when uploading a SHS and the most recent I've noticed is the page that detailed the browsers that had been tested for compliance.
The last time I looked at the browser page it was years out of date. This could mean the page was dated or the compliance testing has not been done. The first could be fixed in minutes, the second would take far longer.
My betting is on the latter.
The last board papers that have been made public were from last year.
All the promotional material is about claims of benefit, none of which have been substantiated and there is a total lack of balance i.e. nothing on costs and/or risks
Far from informing people about myhr and ADHA, they are trying to hoodwink the Australian people by starving them of relevant information.
If anyone is interested in the material that has (mostly) been published in the past four weeks, here is a page that includes over 100 links to such information.
https://privacy.org.au/campaigns/myhr/
Hi Bernard it looks like they are moving content between websites, the IPS the ADHA publishes is a bit loose so I am not sure they understand obligation regarding government record keeping.
ReplyDeleteThe following link takes you to where all the technical publications should be - https://developer.digitalhealth.gov.au/specifications/ehealth-foundations?page=2
It is pretty incomplete and I cannot see any logical behind what is published and what no longer seem discoverable
Good to know the are ground in good information management disciplines then. I now feel all warm and fuzzy
ReplyDeleteAndrew, you are so on the mark.
ReplyDeleteSome years ago when expressing my frustration to a now-retired Canberra bureaucrat of my acquaintance, he replied: "but Greg you've got to understand that they are never wrong!".
How true, how sad and how ongoing.
You should all be aware it is not just senior roles that are being vacated. The ADHA is loosing people in key rolls at a worrying rate, many quite capable, all at a time when this will have the biggest negative impact. A few for better jobs, many of us because it is impossible to function properly, get decisions and recruitment is a joke, there is a culture of few that seem to block recruitment but seem to have no trouble recruiting in their own area. The culture department is a joke and seems to never end.
ReplyDeleteWhen this optout period closes the real issues will begin as there is a shell of an organisation remaining to operate the dam thing.
The ADHA certainly seems a mess. Maybe they need to refresh a few people who sound like they have lost control and respect. That is never good for any organisation.
ReplyDelete@8:22. , sadly it is all the wrong people leaving.
ReplyDeleteA tweet from a UK person who was instrumental in the abandonment of care.data and who is active in the #MyHealthRecord space:
ReplyDelete"First they ignore you. Then they mock you. Then they attack you. Then you win."
ADHA is way down the path when it comes to the media.
So far, when it comes to the well informed (i.e. many commenters on David's blog and including David, we are being ignored.
The more people who make a submission to the senate inquiry the better. It will be a numbers game, so get writing, make it short and snappy. It will be hard to ignore a wave of submissions.
https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/MyHealthRecordsystem
Note it is chaired by an independent senator so there is a good chance it won't be tainted by vested interest/history.
IMHO, the aim should be to delay the completion of the opt-out process until after the next election when there will be an opportunity to let it quietly die. From what has been said above, it is unlikely that ADHA have the political ability to rescue this sinking ship. A new health minister and/or government will be less inclined to push this thing past a skeptical population. It's the Australia Card and Human Services Access Card all over again.
And one of ADHA's many weaknesses is that they did not live through either debacle and so will not have learned the lessons of history.
Ironic.
Bernard. They also isolate you in order to discredit you. I am unable to make a submission as anyone related to the ADHA of “the Agency” as we are told to refer to it, is permitted to have any opinion.
ReplyDeleteA powerful submission would be one co-authored by a number of stakeholders, each presenting their viewpoint against each criteria in the terms of reference, reflecting also recommendations that address each viewpoint.
Clinical, consumer, legal, privacy and security, computer science and informatics, all age groups, and care team types, each requiring different care models and clinical communications and handovers. Finding a way to enforce importance of semantics and a path forward that enables data to be injected into workflows rather than the current labor intensive method the MYER champions.
The answer is a federated model that complements existing investments and allows each party an ability to modernise as and when they can. How that federation is achieved is the question.
Just don’t let them pick you off one by one, it is easy to dismiss the individual, very hard to ignore the collective