The bad week began early in the week when all sorts of comments appeared on the blog making it clear that announcements on the Secondary Use of myHR data and the opt-out process were coming soon.
The stage was being set for opt-out to start with events such as an address to the National Press Club on May 24 and so on.
Tim Kelsey
Chief Executive Officer, Australian Digital Health Agency
'Your Health in Your Hands – the Digital Evolution of Health and Care in Australia'
Thursday, 24 May 2018
Arrive from 11.30am, lunch 12 noon, speaker 12.30 concludes 1.30pm
Canberra - 16 National Circuit, Barton ACT 2600
Here is the link:
This was then followed by a blog post from fellow blogger Dr. Edwin Kruys letting us all know – from the inside – that it was soon to be on for one and all.
It has begun: Australians will soon have a digital health record
By the end of the year Australians will have an online digital health record, unless they opt out of the system. The details of the move towards opt-out will be released soon.
The Australian Digital Health Agency (ADHA) is ramping up its activities to prepare for the change to opt-out. The large-scale operation will involve extensive stakeholder engagement, a nation-wide communication and advertising campaign and increased support for consumers and clinicians.
For consumers who have not opted out at the end of the defined three-month period later this year, a My Health Record (myHR) will be created. The record will be activated when used for the first time by consumers or clinicians.
A clean slate
ADHA has opened a new call centre, launched a revamped website myhealthrecord.com.au and is now present on Twitter (@MyHealthRec).
Staff levels of the call centre – transferred from the Department of Health to ADHA – will increase from thirty to two hundred and will operate around the clock during the opt-out period.
The record will initially be empty apart from two years worth of retrospective MBS and PBS data. Consumers have the option to remove this data.
Pathology and imaging reports are uploaded into the MyHR one week after the test date. Some sensitive tests, such as HIV, may not be automatically uploaded depending on the various State or Territory legislation.
Clinicians and consumers will have the opportunity to stop the upload of results and other reports if desired. Consumers can restrict access to or remove reports from their MyHR.
There is a great deal more here:
This paragraph – since modified – tells us Secondary use is on the way too!
Risks and challenges
The MyHR offers clear benefits as clinicians will have increased access to information such as shared health summaries, discharge summaries, prescription and dispense records, pathology reports and diagnostic imaging reports.
However, every digital solution has its pros and cons. It has been decided that the risks associated with the MyHR will not be explicitly discussed on the website.
Behind the scenes however, risk mitigation has been one of the priorities of ADHA. This obviously includes the risk of cyber attacks and public confidence in the security of the data.
Many consumers and clinicians regard secondary use of the MyHR data as a risk. The MyHR will contain a ‘toggle’, giving consumers the option to switch secondary use of their own data on or off.
----- End Extract.
We can assume this is authoritative info given the author:
“Edwin Kruys is a member of the My Health Record expansion program steering group.”
And finally it was all brought together beautifully here:
New My Health Record opt out and secondary use details leak, as announcements loom
Lynne Minion | 04 May 2018
Weeks before the anticipated announcement of the My Health Record opt out period, an insider’s leak has claimed the Australian Digital Health Agency has decided to not explicitly inform consumers of the risks associated with My Health Record, such as those relating to cybersecurity and the “secondary use” of the clinical data collected within it.
As the ADHA heads towards the imminent announcement of the three-month window in which Australians will be able to opt out of My Health Record before being signed up to the online health information repository, the agency was caught by surprise today when details emerged in a blog post by GP and member of the steering group for the national expansion of MHR, Dr Edwin Kruys.
Kruys wrote that MHR offers “clear benefits” to healthcare through providing clinicians with greater access to discharge summaries, pathology and diagnostic reports, prescription records and more, but said “every digital solution has its pros and cons” and behind-the-scenes risk mitigation has been one of the priorities of the ADHA. However, he claimed Australians may not be made aware of the risks involved in allowing their private medical information to be shared via the Federal Government’s system.
“It has been decided that the risks associated with the MyHR will not be explicitly discussed on the website,” Kruys wrote.
“This obviously includes the risk of cyber attacks and public confidence in the security of the data.”
The most contentious contribution in the post related to the secondary use of Australians’ health information, the framework of which has yet to be announced by Health Minister Greg Hunt.
Vastly more here:
Additionally the Board has not posted its notes in 5 months and Tim Kelsey was in the US when last heard of on International Digital Health Business.
Worse still the system still seems to need lots of rest – especially when it might be most useful!
See here:
Of course, as well, we still have the ongoing issues around the myHR’s compulsion, fitness for purpose, cost, usefulness, reliability, privacy, security and data quality to say nothing of its basically flawed initial design and the open secret that it is intended to monitor GP performance for Government rather that assist clinical care.
Its really sad how so much initial hope has given way to frustration and annoyance.
David.
14 comments:
Just a comment David....
The extract you quoted:
"Many consumers and clinicians regard secondary use of the MyHR data as a risk. The MyHR will contain a ‘toggle’, giving consumers the option to switch secondary use of their own data on or off."
has disappeared.
I wonder why.
Then there's this:
"As a result of the troubled past of the digital record there is a large group of skeptics. It appears that so far ADHD nor the Department of Health have been able to get this group on board."
They've never tried with me. Nobody has ever called me to talk about anything I've posted on this site or been quoted in the media.
I've tried to engage them. I submitted comments on the original Concept of Operations; through the APF I've made submissions; I went to see Paul Madden, Bettina Konti and Tim Kelsey over a period of years to talk about concerns and to offer help. The response has been a big fat nothing.
"The extract you quoted:
Bernard wrote:
"Many consumers and clinicians regard secondary use of the MyHR data as a risk. The MyHR will contain a ‘toggle’, giving consumers the option to switch secondary use of their own data on or off."
has disappeared.
I wonder why."
Well it was there when I captured the blog - so some unseen hand I guess - ADHA possibly?
David.
Dr Edwin Kruys seems to be conflicted and/or confused. I detect two contradictory perspectives are being presented all rolled into one thereby presenting a scenario comprising muddled, mixed, messages.
I have to assume that he is heavily involved in the rollout strategy and therefore committed to the My Health Record absolutely.
"Many consumers and clinicians regard secondary use of the MyHR data as a risk. The MyHR will contain a ‘toggle’, giving consumers the option to switch secondary use of their own data on or off."
A toggle would have been wonderful, together with a place to enter bank account transfer details so I could get some of the revenue should they include my data in a sale of secondary data to a third party.
What a missed opportunity to dissuade those who were thinking of opting out!
It may be that ADHA encouraged Dr Edwin to provide a sneak preview of their opt-out plans, because it might take some of the heat off their own formal announcement when it comes. After all he is " a member of the My Health Record expansion program steering group" and must receive payment for this.
Reluctantly I agree with you. He repeats, thereby promoting, the ADHA messages and in the process becoming another marketing / propaganda outlet.
He seems to have some criticisms but he couches them in language best described as obsequious. He should know better but I suspect he has opted to ingratiate himself with the ADHA for some personal self gratification rather than presenting cogent and unambiguous arguments about exactly what is right and wrong with the My Health Record.
Maybe ADHA and Health only reach out to those people who agree with them rather than convince well informed skeptics like Bernard that what they are doing has value and makes sense. A form of confirmation bias.
Or maybe it is a case of grabbing the spotlight from the Minister in the lead up to budget night? This does appear to be a rather silly move on the CEO behalf. They should be silent and let the Minusters have their time.
will the secondary use report come out during the budget news distraction? That's a big indicator they have something they want to hide.
A classic move for a narcissist eager to polish up the Curriculum Vitae. At the same time the Health Minister becomes further entrapped and he can't do anything about it. He just has to suck it up.
Reading the Star Observer there is a very good article.
DAMAGING OUR TRUST’: WHY MY HEALTH RECORD LETS DOWN SEXUAL AND GENDER MINORITIES
It is critical that people—especially people from gender and sexual minorities and people living with HIV—are made aware of the potential risks of the My Health Record system.
It is critical that people—especially people from gender and sexual minorities and people living with HIV—are made aware of the potential risks of the My Health Record system.
Well don't expect Tim to tell anybody. He's trying to keep it as secret as possible.
Just like old times - https://paulbernal.wordpress.com/2014/02/
Go to YouTube and do a search for
tim kelsey care.data
and see what he has to say.
Most of the videos have quite low view counts.
I'm sure we can put that right.
What I find concerning is that I can find no evidence that there have been any targeted workshops, seminars, debates with this section of our community. That is in the region of 6.5 to 9% of the population excluded for conversations. As my brother pointed out last night, he has also felt frustrated as being deaf very little of the ADHA forums and videos provide Auslan translators.
Seems we have a small problem with inclusive, transparent communications.
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