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.
Melissa Sweeton: June 06, 2018 In: consumer health information, Croakey longreads, digital technology, e-health, Healthcare and health reform
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.
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:
Latest update 18 May 2018
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
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.
Posted by Dr David G More MB PhD at Monday, June 11, 2018