Monday, June 11, 2018

A Pair Of Nice Long Reads On The myHR To Assist In Opt-Out Decision Making.

Given it is a holiday weekend I thought I would have a little break and let two other authors discuss the issues.
First we have Leanne Wells writing on Croaky.

An important overview of the pros, cons and questions about My Health Record

By the end of 2018, a My Health Record (MHR) will be created for every Australian unless they choose not to have one.
This major development brings potential benefits – but also raises complex questions for individuals to consider, according to Leanne Wells, CEO of the Consumers Health Forum of Australia.
Wells reviews the pros, cons and challenges involved, in the #LongRead below.

Leanne Wells writes:

After years of uncertainty about the future of a nationally effective eHealth system, Australia is now preparing for the biggest step yet towards a near-universal scheme with the expansion of the My Health Record’s (MHR) reach to all people – except those who choose to opt out.
So the crunch questions about the pros and cons of MHR now take on a more immediate and direct import for the majority of Australians who have so far not signed up.
The Consumers Health Forum has strongly supported MHR and the change to an opt-out approach because we believe that, for the majority of Australians, the potential individual and national health benefits outweigh the risks that it may pose to privacy and security.
In simple terms, the more Australians who use MHR, the more use it will be to Australians.
Going for opt out makes it much more likely that MHR will become effectively universal with all the benefits of scale, interconnected care and potential for transformational change that this offers for patients and for the health system.
It should not be seen as a revolutionary or final version that solves all our problems and that never changes – it is an evolutionary step that will only get to where it needs to be with use by, and engagement of consumers and health professionals.
A common complaint of the current level of MHR information is that often it is too meagre to be of much use and that too many health providers are reluctant to use it for cost, efficiency, and change-resistant reasons.
Consumers have also regarded it as clunky, although improvements are underway.
Yet opt-out stands to bring us much more quickly to an inflection point where, for the first time, consumers en masse will have access to their records – and to personally control who sees them and under what conditions.
Here is the link:
To be fair Ms Wells presents a pretty balanced view and makes it very clear that the myHR is no unalloyed good and that there are all sorts of issues which one needs to reflect on before deciding to just let opt-in happen.
A rather more negative and again long read is here:

Why and how to opt out of My e-Health Record

After the article “My Health Record gets one million more reasons to sign up” was published on health.gov.au, it seems only fair that someone should mention at least a few reasons to opt out.
By “one million”, the Department of Health meant a million of Australians chosen to be Guinea pigs in the new e-Health trial where online heath records were created for each of them without them asking. The trial is touting its success saying that only 2% opted out of My Health Record (MyHR). However, the low opt out rate could easily be down to the fact that the trial participants were only sent glossy brochures plastered with photos of smiling people and outlining only the benefits of having an online health record, without mentioning any risks, disadvantages and implications. Just like it is done in other medical “information” booklets: pick up any pro-screening brochure at your doctor's office and compare the length of text urging you to screen and the text honestly disclosing risks of misdiagnosis, over-treatment and other harms. The situation with MyHR can hardly be expected to be any different.
Every person needs to know all pros and cons before making an informed decision. We all heard about the promised benefits of having an online medical record. Here is a small list of reasons on

Why opt out

The laws and legislation governing and protecting My Health Record can be changed at any time to suit the political agenda of the day.

It already happened once: the parliament passed a bill specifically to enable the creation of trial online health records for one million people who never asked for it. Back then the need to obtain consent was a big legal obstacle — so this was removed. Now the law does not require your consent for your health data to be collected and stored. At the moment, the e-Health scheme allows to opt out, but there is no guarantee that opting out won't be stopped or made excessively difficult in the future. There is also no guarantee that one day some budget genius won't come up with an idea to start selling health record data to private corporations, insurance companies, pharmaceutical giants, marketing researches or anyone else. It will be simply a matter of another bill hastily passed through.
Eventually, all the health information may be stored in a large database where it can be used for purposes other than health care and matched against other databases. Australian Bureau of Statistics already announced its plans to link census data with medical records. The Australian Taxation Office is also pushing for increased sharing and use of Government held personal data.
Vastly more here:
Both these are well worth the time to read and I reckon at the end of that process you will be pretty clear as to what course suits you!
All will be aware that my view is to stay well away and to opt-out unless there are circumstances the myHR seems to provide something you believe you need despite all the potential downsides.
David.

10 comments:

Peter Harding said...

Despite all the reading I'm doing from both sides of the fence, I'm struggling to understand why so many are worried about the security of MyHR. Sure there are a number of involved parties with spotty records but I actually believe that previous mistakes can be learned from.

The fact is we're going to need to evolve the way we manage patient records eventually, and there's no time like the present. Personally I have no reservations about my information being stored on the internet, and I believe the opt-out initiative is adequate for those with sensitive histories.

The linked annystudio article loses me completely when they don their tin foil hat and make an absurd statement like "There is no widely-accessible, safe and secure means of online communication in Australia." - aside from the paranoia within this statement, it's factually incorrect, I think what was meant was "...online communication hosted in Australia." I refuse to believe any local startup could match the security of any of the named email providers.

I understand and empathise with many of the concerns around this implementation, but I would like to ask the naysayers, what's Plan B? Is there a better way to achieve this or do you think digital/internet based health records are a bad idea?

Bernard Robertson-Dunn said...

"Is there a better way to achieve this or do you think digital/internet based health records are a bad idea?"

The bad thing is giving your data to the government with no guarantee what they can/will do with it.

If the approach was based upon GP records and improved interoperability/health record management, things would be a lot better (more data available, not copies) safer, more efficient (only one record system to manage, not two) and more resilient.

Like the UK/Sweden/NZ are moving toward.

Australia is the only country in the world that has a centralised, government owned, summary, data base approach. Tim thinks this is revolutionary, I think it is a dead end.

Anonymous said...

Another risk which is putting me off the Government HR is that once they go opt out There will be enormous reluctance to change the status quo, resulting in Australia being stuck in a world that is simply an online version of the old paper chart world. Alternatively the world moves on and the current investment no longer support the MyHR thing, much like the floppy disk and the CD-ROM

Anonymous said...

@12:52 PM I agree. It's best described as a process of 'provressively entrenched entrapment'.

Bernard Robertson-Dunn said...

"There will be enormous reluctance to change the status quo, resulting in Australia being stuck in a world that is simply an online version of the old paper chart world."

It is interesting that both Tim amd Greg Hunt have compared myhr with paper and fax, not existing clinical eHR systems and better interoperability. They are either ignorant or being disingenuous.

Bernard Robertson-Dunn said...

Talking about interoperability, do a search in digitalhealth.gov.au for "National Health Interoperability Roadmap" and you get

"Creating a connected health service, one step at a time
29th May 2018
The National Health Interoperability Roadmap is on its way – which means your chance to get involved is coming soon."

https://www.digitalhealth.gov.au/news-and-events/news/creating-a-connected-health-service-one-step-at-a-time

Read the link and it says:

"Collective agreement on two critical issues is essential at this juncture:

* What is the information that should be shared?

* How do we ensure that what is output by one system can be reliably interpreted and used in another?"

In other words, we are still working on the problem.

It also says:

"Let’s plan ahead

To lay the foundations for resolving these issues, we’re committed to developing a National Health Interoperability Roadmap by December 2018, and we will soon be calling for stakeholders to get involved."

I can't find a "National Health Interoperability Roadmap" but I did find this:

"Interoperability and Connected Healthcare in Australia
Early Engagement Paper
27 February 2018 V1.0"

which says:

"The Agency is developing a National Interoperability Roadmap"

Seems to me they are still discussing what the problem is, never mind developing a plan to solve the problem.

It also seems that they have missed their own deadline of December 2017 by at least six months. Unless they've developed it and are keeping it secret.

On the other hand they are making significant progress on moving to opt-out.

It rather indicates their priorities.

Anonymous said...

I bet they still have typewriter

Anonymous said...

What is also telling (alarming) is there is no mention of:

Are we allowed to share said information?
Do we understanding the consequences of sharing said information?
Do we still want to share that information?

I also find it disheartening they are talking about computer systems. These systems are just an extensiin for humans to communicate. They ADHA has yet to deliver anything that would replace drums or smoke signals. The printed paper will be safe with the kids from the 70’s

Anonymous said...

It is interesting that both Tim amd Greg Hunt have compared myhr with paper and fax, not existing clinical eHR systems and better interoperability. They are either ignorant or being disingenuous.

Bernard it might be that compared to the current generation of EHR the governments version is not comparable, against the emerging next generation it is simply embarrassing. While all the talk of security is valid, it is masking the truth that the system is well past its end of life.

Anonymous said...

There is also no mention of:

* why should we share our health data with the government?

* should we be made to share our health data with the government?

* why is the government going to such a great expense to get at our health data and risk our privacy?