This blog is totally independent, unpaid and has only three major objectives.
The first is to inform readers of news and happenings in the e-Health domain, both here in Australia and world-wide.
The second is to provide commentary on e-Health in Australia and to foster improvement where I can.
The third is to encourage discussion of the matters raised in the blog so hopefully readers can get a balanced view of what is really happening and what successes are being achieved.
Saturday, May 19, 2018
My Health Record Radio Program Alert - 9.30am Sunday 20 May, 2018 ABC Radio National.
Tim Kelsey is the featured speaker, along with some who say they will opt out.
Pulse+IT's weekly roundup has a few comments that indicate a less than complete knowledge of the government's access to health data and the reality of myhr.
They say:
"We also remain of the opinion that most people still trust the government – or at least Medicare – to manage their data safely. The government already holds lots of data about your health: they know when you last went to the doctor, what medications you were dispensed and what blood tests you have had, because they pay the bills."
The government holds very little health data, they hold billing data. They may know you have seen a GP or specialist - they don't know why. They may know you have been prescribed a medicine - they don't know why.
It is highly likely that the government really wants to know what is behind the billing data, hence the push for health professionals and patients to tell them by uploading health summaries and event summaries.
And when it comes to trust, this is something that is rapidly disappearing when it comes to health data (not billing data, which the government is quite entitled to hold).
The system was originally opt-in with explicit consent, now it is opt-out with no requirement to get consent. How can Australians trust the government not to make the system compulsory and to insist doctors upload all their data to the system?
Furthermore Pulse+IT is ignorant of many privacy advocates' position:
"While the privacy advocates argue they are working to protect citizens' privacy from an ever-encroaching government, they rarely explain their views on why they are actively working against a citizen's right to access their own information, which was one of the primary reasons the PCEHR was developed in the first place."
We are not working against "a citizen's right to access their own information". We are not convinced that the government is going about it in the best way.
What we object to is having to give our health data to the government to keep forever, and the government removing the need to get patient's consent for either registration of My Health Record or secondary use of supposedly de-identified data.
And then there's the little matter of the cost of My Health Record, both the government's cost in building and maintaining the thing and the ongoing cost of GP time in managing it.
If the government had the patient's best interest at heart they would have pursued the option of making patient data in GP's systems available through an appropriate portal. Just like the UK and Sweden are doing.
The patient would have access to far more data, at little cost to GPs or the government and at a lower risk to privacy and safety. Similarly in cases of emergency more data would be available.
That the government has gone for its huge, costly, risky database in the sky looks to me very much as though the government isn't really interested in health care of the individual, only its bank balance.
The level of reuse of statements and phrases makes you wonder if a software application wrote this. The analysis of problems in health IT and the implications of various solutions became a conversation the DoH and ADHA could not follow or understand so they shut them down. A problem buried is a problem solved mentality.
The ADHA and MyHR are like that balloon of wishful thinking drifting towards the needle of reality. It is only a matter of time before the thing gets hacked.
Bernard what you and other privacy advocates do for the citizens of Australia should commended. Perceived ignorance of privacy is not a right to invade people’s privacy, which seems to be the mindset of Governemnt and these big advertising companies like Facebook, goodie, and others. The way technology is being used to manipulate people and prey on them is not what many pioneers of modern computing would have intended. It is currently corrupting societies not advancing them.
Thanks David
ReplyDeletePulse+IT's weekly roundup has a few comments that indicate a less than complete knowledge of the government's access to health data and the reality of myhr.
ReplyDeleteThey say:
"We also remain of the opinion that most people still trust the government – or at least Medicare – to manage their data safely. The government already holds lots of data about your health: they know when you last went to the doctor, what medications you were dispensed and what blood tests you have had, because they pay the bills."
The government holds very little health data, they hold billing data. They may know you have seen a GP or specialist - they don't know why. They may know you have been prescribed a medicine - they don't know why.
It is highly likely that the government really wants to know what is behind the billing data, hence the push for health professionals and patients to tell them by uploading health summaries and event summaries.
And when it comes to trust, this is something that is rapidly disappearing when it comes to health data (not billing data, which the government is quite entitled to hold).
The system was originally opt-in with explicit consent, now it is opt-out with no requirement to get consent. How can Australians trust the government not to make the system compulsory and to insist doctors upload all their data to the system?
Furthermore Pulse+IT is ignorant of many privacy advocates' position:
"While the privacy advocates argue they are working to protect citizens' privacy from an ever-encroaching government, they rarely explain their views on why they are actively working against a citizen's right to access their own information, which was one of the primary reasons the PCEHR was developed in the first place."
We are not working against "a citizen's right to access their own information". We are not convinced that the government is going about it in the best way.
What we object to is having to give our health data to the government to keep forever, and the government removing the need to get patient's consent for either registration of My Health Record or secondary use of supposedly de-identified data.
And then there's the little matter of the cost of My Health Record, both the government's cost in building and maintaining the thing and the ongoing cost of GP time in managing it.
If the government had the patient's best interest at heart they would have pursued the option of making patient data in GP's systems available through an appropriate portal. Just like the UK and Sweden are doing.
The patient would have access to far more data, at little cost to GPs or the government and at a lower risk to privacy and safety. Similarly in cases of emergency more data would be available.
That the government has gone for its huge, costly, risky database in the sky looks to me very much as though the government isn't really interested in health care of the individual, only its bank balance.
The level of reuse of statements and phrases makes you wonder if a software application wrote this. The analysis of problems in health IT and the implications of various solutions became a conversation the DoH and ADHA could not follow or understand so they shut them down. A problem buried is a problem solved mentality.
ReplyDeleteThe ADHA and MyHR are like that balloon of wishful thinking drifting towards the needle of reality. It is only a matter of time before the thing gets hacked.
Bernard what you and other privacy advocates do for the citizens of Australia should commended. Perceived ignorance of privacy is not a right to invade people’s privacy, which seems to be the mindset of Governemnt and these big advertising companies like Facebook, goodie, and others. The way technology is being used to manipulate people and prey on them is not what many pioneers of modern computing would have intended. It is currently corrupting societies not advancing them.
ReplyDeleteDavid I am struggling to locate the program. Would you have it?
ReplyDeleteIt hasn't happened yet - The program is called Sunday Extra - hosted by Hugh Rimington. Tomorrow morning.
ReplyDeleteDavid.
Many thanks, could not find it on the scheduling.
ReplyDelete