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.
EmoticonEmoticon