Here are the results of the poll.
Are Australia's E-Health (Digital Health) Standardisation Processes Working As They Should?
Yes 17% (24)No 52% (74)
I Have No Idea 31% (45)
Total votes: 143
Even with a lot of opt outs, for lack of insight, a majority thinks things are broken. I am having a chat with the interoperability study this week so any insights welcome as a comment.
A great turnout of votes!
Again, many, many thanks to all those that voted!
David.
My personal view is the best thing would be a leadership change and not just the CEO, I have lost all trust in the ADHA to act in an impartial manner. However David you are a different kettle of rich, so:
ReplyDeleteThe ADHA clearly endorses the belief that on the surface much of the necessary information models are in place but the cross-business interworking requires understanding of an acceptable business model, fairly distributing effort, resource, and reward.
Many alternative views communicate that the current situation in Australian digital healthcare delivery is a portrait of fragmented systems, business and policy agreements and accountability that in part constrain the majority of investments resulting in deployments that remain heavily reliant on human interpretation of the information received with little or no computer aided processing or analysis.
We as either adopters or beneficiaries of digital health are said by some (with questionable evidence or explanation or what that means) clearly have higher expectations from government.
From a system safety perspective has the ADHA thought through the consequences of this work and how they intend to facilitate a multitude of communities sharing information independently.
What medico legal implications do they believe need to be addressed to ensure interoperability can take route?
How will they address semantics?
Why would we trust them?
What will they do that NEHTA did without dictating solutions?
Clear statement on what parts of our personal, confidential records, sensitive or otherwise are to be extracted now, and How will we be informed if that scope changes in future and we then object if we want data not to be used at all? Since the plan suggests the next step may result in only asking for it to be ‘pseudonymised’?
ReplyDeleteWhat do we do, if we object to any use on any grounds, such as ethical or conscientious grounds for objection to use in research about contraceptives or pregnancy terminations?
How will we know in future that there are no plans to release my data outside Australia, how I’ll that be monitored and enforced, and if that changes what guarantee is there we could object at that point?
How will objection management (storing our opt out decision) be implemented with other data sharing? (Police matters where we are a victim,, Electronic Prescription Service, Out of hours of emergency access, Proactive care at local level) so we understand it?
What will ensure opt out remains more than just Mr.Hunt’s word, if it has no legislative backing?
If people object to their data used in research, whether on conscientious or private grounds, is that to be disrespected
I would like to understand what ‘anonymised’ means in these discussions. And what do they define as pseudonymous. These are often used interchangeably in discussions of health data secondary use.
If leadership wants to foster genuine trust we need something better than an illusion of consent and an illusion of honesty. Public trust will not be built on a broken promise.
There is also the question or why should we trust someone 52 million U.K citizens did not for very valid reasons?
A simply why and what do they expect to achieve?
ReplyDeleteMeanwhile, in the land of real medical care.......
ReplyDelete"Young, healthy and demanding blood tests: The Americanisation of Aussie patients"
http://www.smh.com.au/comment/young-healthy-and-demanding-blood-tests-the-americanisation-of-aussie-patients-20170829-gy6ei1.html
"A small study from 1975, published in the British Medical Journal and drummed into medical students everywhere, concluded that around 82.5 per cent of diagnoses were evident from the story patients tell. Examination solved a further 8.75 per cent, presumably leaving 8.75 per cent of diagnoses for laboratory tests."
The article contains not a single mention of health or medical records.
Tell me again why the Federal Government is trying to get a copy of everyone's medical records.
Then, in the opt-out publicity campaign, tell the Australian public.