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.
Tuesday, April 11, 2017
Another Uninformed Commentary Regarding The myHR Appears In The Mainstream Press.
Years back, I worked with a group of people who had contracted Hepatitis C. The experience of one woman stayed with me.
Julie looked every inch your average working mum. Hep C was a hangover of a past life she was desperate to escape.
But when she confided her positive status to a co-worker, word spread throughout her office.
She found herself shunned by one group of fearful colleagues, and pitied by another.
Julie's story stuck with me, because it was such a striking example of how sensitive medical data is. Its unauthorised release wrecked her work life.
It's this sensitivity that has meant the benefits of e-health have eluded our nation for a decade.
We know that fully digitising and unifying our personal medical data would dramatically improve our health and save billions each year. Yet our decision makers are jumpy about the potential consequences.
This reluctance contrasts sharply with the way in which we have bounded toward exposing our other private information.
Instead of the anonymity of cash we use electronic transfers that track our activity. Instead of relatively untraceable mail and phone calls, we allow servers in foreign countries to house our personal correspondence. Instead of keeping our thoughts to ourselves we publish them on Facebook, which quietly catalogues a complete history of our photos, our networks, our lives.
We could quite easily stop doing all of these things, because whenever you start collating data in the one place there is always at least some risk of a hack or theft. But we don't, because it would be a hassle. We trade off the security of our privacy for convenience.
But our health records feel different – they are the most sensitive, private information we have. Then again, the benefits on offer are so much greater than a mere convenience.
"Personalised medicine" would allow doctors and nurses to use a combination of patient history, behaviours, and genetic data to identify individualised treatments and drugs.
Our lives – and the lives of our children – could conceivably be saved through the swift transfer of pertinent information.
Better, freer data would also enable those who run the health system, including hospitals and the PBS, to better identify areas of low-quality care.
It is now 10 years, however, since the Rudd government launched its e-health initiative. It failed due to poor pick up and low stakeholder support.
The current government has looked to reboot efforts through its My Health Record program, but take-up is still poor and, like its predecessor, it faces a critical issue: doctors don't endorse it.
The Australian Medical Association's key objection is that under existing regulations patients can remove anything from their own records without even leaving a note about the omission. This renders any record dangerously unreliable.
Yet government has allowed this loophole, because it is so keen to ensure every potential privacy concern is catered to.
That's a shame. Because there is a lot of evidence that indicates if government moved more decisively, we might well be receptive.
Sam Crosby is executive director of The McKell Institute.
First – on Julie’s story – it is outcomes and experiences like this that should and indeed do make people share health information very carefully. Once material like this is out it is very hard to get back!
Second I know of no evidence that overriding people’s privacy is likely to make them happier to have their privacy violated!
Third, where is the evidence that the government will be careful and secure with information, given what they did recently in leaking personal information for their own political purposes.
Fourth what is the evidence the information in the myHR is actually useful for the purposes Sam proposes.
All this enthusiasm comes from the analysis reported in this report:
The much more measured approach to the use of Data in a careful and transparent way almost certainly has merit but going at it like a ‘bull at a gate’ is not the way forward. Let’s build trust, public awareness and confidence first before proceeding!
Anyone who knows anything would not use the myHR as a base for the sort of datamining discussed other than in desperation!
Please download the report and then comment if you have a moment! With the revelations from earlier on the way the myHR can leak private information, use of this information needs very careful thought - to say the least.