Quote Of The Year

Quote Of The Year - Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"

Sunday, July 29, 2018

There Are Many Groups In The Community Who Will Really Struggle With The myHR Opt-Out.

As we all know with most programs delivered by Government Opt-In is the best way to proceed. You can think everything from Age Pensions to Medicare Claims. No-one forces you to take the money or claim a pension if you don’t want to.
With the myHR it seems it has been decided we are to given a record whether we want it or not unless we take advantage of the period available to opt-out of having a record which only runs till October 15, 2018.
The core point is that to stay out of the system you need to know what is going on and be able to record your preference via the internet, phone or attendance at an appropriate Government office.
Absent a major public advertising campaign many citizens will just wind up with a record they may, or may not, have wanted with all the possible downsides.
The groups who are quite likely to be disadvantaged by this process include.
1. Those who are never users of the Internet.
These people may make up to 20% of the population and so will miss most of the ADHA communication.
Here is a link:
2. Those who struggle with English.
3. Those who are homeless and so really focused on other issues.
4. Those with low literacy and low educational levels.
5. Those who suffer from intellectual disability of some sort (Brain Injury, Alzheimer’s etc., Inherited Diseases etc.)
6. Those who are incarcerated.
7. Those out of the country for the next few months.
8. Those so flat out with the rest of their lives that all this just slips under the radar.
9. Those who don't understand the technology at all, passive and trusting patients, limited cognitive capacity for understanding consequences or visualizing risk from intangible data dealings, or limited education, etc.
10. Those with limited language capacity, especially about esoteric high tech, biomedical and bureaucratic topics like these: either no or limited English language (older migrants), the very young, or those with other language difficulties. 
11. Those people who feel obliged to take whatever is given, perhaps because they fear their health care will be compromised if they say no to this, as they are uninformed about the difference between a useful EHR system and this one, and have no access to the necessary independent info and advice? Some chronically ill.
I am sure there are a host of others I have missed – feel free to comment. I am not sure how many are covered by these overlapping groups but it surely runs close to 30% of the population.
The conclusion I reach from all this is that the opt-out approach is fundamentally flawed and dishonest. If the myHR was useful and worthwhile dragooning users would not be needed.I believe the exclusion of so many from the possibility of a free choice is plain wrong and unethical.
I know what I say will not change anything but that the approach is wrong and discriminatory needs to be pointed out and I suspect the truth of this is beginning to be recognised.
The myHR really should be fundamentally redesigned with a clear set of clinical and patient objectives, be voluntary and attractive to its users, be targeted towards those who it may benefit from a new system and cease being a Government data hoover.
If this can’t happen then the ADHA should just drop the whole program and move to focus on things that might actually be good value for the public penny and the Health System in the Digital Health space.


Anonymous said...

Great analysis and summary David, the report you link to is also useful. It is not the figure of 30% but rather what or who makes up that number that makes in disturbing. To treat the old, the vulnerable, the distracted and those who choose a less online life is a bit poor to say the least.

With news items emerging where it is becoming evident the ADHA has funded many individuals and organisations this how mess is turning into some sort of elitist experiment on the poor, treating people as no more the a data point and placing a value on them as such.

As for the elderly, I did not think the aged care record worked with the GovHR? Or am I wrong?

I will remain anon as who knows if the ADHA world class cyber team are watching

Anonymous said...

My brother who is deaf reported difficulty participating as the ADHA never used Ausland services for many of their engagements, never received a response. I am not surprised that a large portion of the community has been ignored. This is just another example - https://www.visionaustralia.org/community/news/my-health-record-opt-out-accessibility

The ADHA is not a healthcare focused organisation

Anonymous said...

Just to lighten the conversation. This is a glimpse into how all this came about. MyHR Planning -https://www.youtube.com/watch?v=BKorP55Aqvg

Anonymous said...

@July 29, 7:00 PM, thanks for that made my Monday.

Something to keep an eye on from a ‘why’ and scope creep perspective

A NEW national data- sharing network should be established for Australia’s doctors, dentists and other primary health carers who are failing to deliver patients the treatment they need, according to a new report.

Anonymous said...

This popped up in my inbox, well worth reading. https://womensagenda.com.au/uncategorised/a-surgeons-very-real-concerns-about-my-health-record/

Anonymous said...

Just read the Women’s Agenda article myself - one of the most interesting, articulate pieces I’ve read.

Anonymous said...

@11:24. Great article, certainly positions things nicely and calls out the irrelevance of some aspects of the debate. Frames new thinking nicely

Dr David G More MB PhD said...

I agree, a fine effort...David.