Here are the results of the poll.
Do You Trust Government To Keep Safe And Not Abuse Private Information You Share With It?
Yes 4% (4)No 95% (99)
I Am Not Sure One Way Or The Other 1% (1)
Total votes: 104
It seems the vast majority do not think the Government is worthy of their trust! I find this outcome pretty sad and worrying.
Any insights welcome as a comment, as usual, especially regarding what might be done to get back public trust of our institutions and who / what is responsible for the apparent erosion of trust.
A great turnout of votes!
Again, many, many thanks to all those that voted!
David.
The biggest concern for me David is what happens after the big push for opt out? The change from clinical to consumer focus will result in a data store largely forgotten other than a recurring line item in a budget somewhere. If we take a step back and look at it from a population perspective. Just how many consumers would regularly visit their record? How many would gain any value, how much noise will this create for a supposedly already swamped healthcare system.
ReplyDeleteFrom a medical perspective how will this information enter into clinical information/workflows automatically and seemlessly to support rapid decision support?
I wonder with the rapid advancements of technology if the form of these records will if not already become obsolete and unusable by clinical systems?
There is also the challenge of algorithm based technologies will face with regulatory policy and process in as far as that any product may be clinically tested, produced, marketed, and used in a defined, unchanging form. That’s why the blood-pressure machines many people use in pharmacies look a lot like the ones they used a decade ago.
Will the ADHA focus (and rightfully so) on security and risk, simply lock the information up so restrictively, rendering it useless?
So perhaps the fax and the PDF will be hear for sometime, and if the same entity has vested interests in the monolithic MyHR problem and policy and regulatory change, well I can see the future being a very constrained one.
What is to trust, I believe the intent might be authentic from Government. A lot of public trust and respect has been lost over the past five or so years. I do not believe we are in a state to Govern well at the moment.
ReplyDeleteHaving someone lead this with the legacy of care.data is a big mistake.
I see this morning the DoH cancer screening project faces further delays. Somehow secondary use and consumer access and control, or even a workable system of systems will never happen. I will be a gift hoarse for an archeologist before they get anything right and complete something. All these half jobs will interact at some point in time, wonder how the ADHA interoperability strategy will deal with the consequence?
ReplyDeleteI would not hold out for much from the Interoperability strategy. The language being used by Tim and co is more akin to a CIO looking to have an internal system interoperate, rather than an open system of systems interoperability goal. Integration at a technical level is important, I simply ask the call it integration of technology and not interoperability as it does neither discipline any favours.
ReplyDeleteTwo simple question for the ADHA and the politicians:
ReplyDelete1) Has anyone published peer-reviewed research measuring ACTUAL benefits from using the MyHealthRecord ? ie. not the wild estimates prior to implementation.
2) What is the financial return from the current few million records compared to the cost ?
A question for the readship, I had a PCEHR offered to me as part of the trials and I chose to opt out, I now have a well known app that handles my and my GP needs well. As I have already opted out, will this mean I remain opted out come March 2019 when they finally are ready for the final big push?
ReplyDelete11:42 PM. In theory you should not be registered as you point out you have already opted out. That then raises a number of questions.
ReplyDelete1. How sophisticated is the registration capability
2. Where are they pulling the citizen information from to register everyone
3. Does the Government have a database of those who have opted out
4. Is the ADHA legally allowed to collect such information or would that require consent from thiose who have opted out
"Does the Government have a database of those who have opted out"
ReplyDeleteOf course they do. They keep everything. Once they have collected the data they own it, in spite of what they may claim. And that goes for all the data in MyHR - they collect it, they own it. They own it, they can link it, they can match it. What goes on behind government doors stays behind government doors. Very few of the privacy rules that apply to citizens apply to government.
Wild Health: Can MyHR bridge the interoperability gap?
ReplyDelete17 November 2017
http://medicalrepublic.com.au/wild-health-can-myhr-bridge-interoperability-gap/11934
"Dr Trujillo, the Chief Clinical Information Officer at the Australian Digital Health Agency, spoke on the topic of “Bridging Interoperability Gaps; Patient Safety Imperative” at the Wild Health Summit last month."
Let's see if we can answer that question by asking two others:
"Does MyHR contain all of a patient's medical data? No. At best it's a summary, at worse it's incomplete and inaccurate"
"Does interoperability (which is an IT term, doctors prefer to call it sharing medical information) require sharing all appropriate medical data, as, when and where needed?" Yes.
That answers Wild Health's question - No; MyHR will not bridge the interoperability gap.
Sharing of information does not need MyHR; having MyHR actually makes things worse. Information sharing is a totally different problem from creating a eHealth record.
MyHR has tried to solve the wrong problem. It's also a bad solution to the wrong problem.
I've seen nothing to indicate ADHA managers know the difference between interoperable. integrated and interconnected. It's no wonder they are trying to solve the wrong problem. As my Irish friend said "If you want to get to there I wouldn't be starting from here".
ReplyDeleteBernard on this rare occasion we have a divergence. Interoperability is a set of layered agreements and understandings. Interoperability should be the degree to which knowledge and information is anchored to a unified model of meaning within a community. Technology is but one enabler. The focus or misunderstanding that interoperability is a technical or integration viewpoint is perhaps the Achilles heal for clinical Interoperability. The CEO of ADHA in his purge has removed a complementing set of knowledge basis that should be in place at a national level to complement medical leader like Monica.
ReplyDeleteThe Wild Health Summit seems to have been nothing more than just another 'Talkfest'. If not then What did it achieve? What problems did it solve? What did it deliver?
ReplyDeleteBernard said:
ReplyDelete"Wild Health: Can MyHR bridge the interoperability gap?
17 November 2017
http://medicalrepublic.com.au/wild-health-can-myhr-bridge-interoperability-gap/11934
"Dr Trujillo, the Chief Clinical Information Officer at the Australian Digital Health Agency, spoke on the topic of “Bridging Interoperability Gaps; Patient Safety Imperative” at the Wild Health Summit last month."
I watched the 4 min video clip and I have to say it was nothing more than wishful thinking as far as I could tell.
Direct Link to clip
https://youtu.be/rNMd1vbChGc
David.
"...we have a divergence."
ReplyDeleteI don't believe we do. I agree with everything you have said. My point is that interoperability (sharing of medical data) does not require the storage of that medical data in a centralised, government owned database. It's an unnecessary and complicating component.
The technical interoperbility level problem could be solved with off the shelf messaging infrastructure such as IBM MQ series (other products and approaches are available). To rephrase what you have said - it's the content of the messages that matter.
"The Wild Health Summit seems to have been nothing more than just another 'Talkfest'. If not then What did it achieve? What problems did it solve? What did it deliver?"
ReplyDeleteI think that might be unfair. You can ask the same of any conference. Conferences are about meeting people, networking, hearing new ideas, and debate. That is what they deliver and how we measure what they achieve. If you are unhappy with what one or more people say during their allocated slot at a conference, then of course debate them and engage with their points. Having a swipe at a conference because you disagree with a speaker is off the mark. Bringing out divergent views, and responses to them, is exactly what a conference should do, right?
It was no doubt about as useful as listening to any ADHA manager present, which is not very useful. What ADHA can't say is "I will now hand you over to our technical expert who will outline the technical and compliance barriers to achieving our goals" and therein lies the problem. Apart from a few people, who have no voice to management the ADHA does not have the expertise to know what the true barriers are, and neither did NEHTA. Its like a repeat of the dot com bubble where you could take a company to an IPO with an idea and lots of talking heads and make a fortune and no one bothered to check if anyone in the company could code.
ReplyDeleteHaving medical advisers is a good idea, but none of them have any technical depth and can be sold anything. What is sadly lacking is the technical and standards expertise to deeply understand the issues. When you understand the issues the fixes are just hard slog with a focus on low level quality, government services like PKI and clinical models and not "Announceables" and the government wants "Announceables". If they were trying to sell us a car we are at the clay model stage and no one in the organisation, with any power, knows how to use a spanner.
Well ADHA did, they bullied them and ousted them. Following tried and proven method I believe they then kicked out those they used to bully and demoted those they are yet to kick out. I can say that with knowledge as I worked there until recently. There is a culture in ADHA and it is different to what they would have you believe and it start right at the top.
ReplyDelete@7:29 PM - If that is so, and I have no reason to think otherwise, it is because those "right at the top" have been seduced by their position into believing they know how and can solve the problems and demonstrate absolute leadership to the world where everyone else has failed. The toxic mix of ego, power, political support and an abundance of money is the root of the bullying. It is no different from what we saw in ADHA's predecessor NEHTA.
ReplyDelete@6:34 PM - medical advisers lacking in practical experience across all essential domains are naive and of no value.
7:29 and 10:00. Sounds like a classic case of too proud to admit the need for help. Based on that I am sure there are lots of telling people things need to be done, when asked for clarification or elaborations then a natural reaction would be to strike out and then gossip that others are blocking progress or being negative. Digging such a hole abd lining it with misplaced pride would lead to sackings to save ones face.
ReplyDeleteAnyone from ADHA like to confirm or deny? It’s been a while since we had a story from the ADHA.