I noticed this a few days ago.
I can now view my health record and I wish I couldn't
The fact that I can now view my health record online has made me so much more anxious. I've been looking at past blood test results, agonising over borderline results, and even spotting where results have been labelled 'abnormal' but I'd never heard anything about it until now. I've been feeling so rough for the past few months and it's been jammed down my throat that it's definitely anxiety. But it's so hard when you feel sick every day to believe that you have to just learn to deal with it, and that there isn't an underlying medical reason. And now, being able to see all my test results, my monitoring of symptoms has just sky rocketed.
The past few weeks I'd been really good with not googling symptoms or worrying that I've got a serious illness. But for some reason today I went down that health anxiety rabbit hole again and I'm back to being terrified. When this happens I tend to do a few things to frantically alleviate my worries, like book a doctors appointment and buy some vitamins that I havent had before. I guess I'm just venting because I'm angry and upset at how crippling health anxiety can be, and how much I still believe that I have severe medical problem. :(
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Here is the link:
https://www.reddit.com/r/HealthAnxiety/comments/th5b15/i_can_now_view_my_health_record_and_i_wish_i/
Interesting to see others had similar worries and anxieties to the extent of some even declining testing!
I remember when the push to get results into the #myHR I mentioned this as a risk – now confirmed – and suggested results only be released by doctor – after discussion with the patient – to avoid just such scenarios!
When you have a system which is designed for doctors to use, without consideration of how patients may not understand, or be harmed or damaged by unfiltered data this is what you get!
Those data-hungry bureaucrats at the ADHA and DOH have a lot to answer for!
David.
4 comments:
"When you have a system which is designed for doctors to use..."
But it's supposed to be "your" health record. It isn't designed for doctors, although they may use it, if the patient so desires.
In the original design, a patient was supposed to discuss and agree with their GP that they would become their Nominated provider.
This is what the Concept of Operations said:
A nominated provider is the author of the Shared Health Summary and they are
required to assert that they:
• Are delivering continuing, coordinated and comprehensive care to the individual.
• Are a qualified medical practitioner, registered nurse or Aboriginal Healthcare Worker or other professional group permitted under the forthcoming PCEHR legislation.
• Have assessed and described all aspects of the Shared Health Summary and taken reasonable steps to verify the accuracy of information. In undertaking that assessment, the nominated provider will take into account other relevant information on the individual’s PCEHR.
• Have reviewed the Shared Health Summary with the individual and both parties agree that the provider can act as the individual’s nominated provider.
This is just a summary, the conop contains more details.
The concept of Nominated Provider has disappeared. There is nothing in anyone's MyHR that talks about Nominated Provider.
The MyHR is a shadow of what the Concept of Operations said the PCEHR was supposed to be.
This is what the Concept of Operations says:
The Concept of Operations will be periodically updated as the development of the PCEHR System progresses. This version of the Concept of Operations will set the basis for the construction of the PCEHR System by the national infrastructure partner to be engaged to build the core components of the PCEHR System.
This version of the Concept of Operations contains a moderate level of detail about the PCEHR System. This is intentional as it provides readers with a single document that describes the many elements of the PCEHR System in sufficient detail to inform stakeholders.
If the Concept of Operations has been updated it hasn't been published. In fact the original Concept of Operations does not seem to be available of any government website.
If anyone is interested here's a copy
https://www.privacy.org.au/Campaigns/MyHR/docs/PCEHR_110912_Concept_of_Operations.pdf
If anyone is new to all this, here is a reasonable summary from the Parliament House website:
https://www.aph.gov.au/Parliamentary_Business/Bills_Legislation/bd/bd1112a/12bd100
Nevertheless - what the ADHA promotes these days in clinician use - docs, nurses and pharmacists in disasters etc. The planned user has really shifted over the decade IMVHO!
David.
Best described as being a system now out-of-control due to a combination of function creep, lack of any meaningful and effective governance, radical change of purpose, failed project management, bureaucratic hubris and political meddling.
After 9 years of MHR existence & several years of opt-out (my record was created before National opt-out), there’s nothing in my record to be anxious about as described in the article. But that’s because mine still doesn’t contain any of my Pathology, imaging, referrals or SHS. The only thing to be anxious about would be if I was relying on it to inform HCPs for medical care. It can achieve only about 10% of promoted functionality. Yes, it does have Medicare data of Rx & item numbers but that was mostly possible before MHR. Every specialist had a long list of questions that 80% to 90% can’t be answered with data from my MHR (double ‘my’ is redundant). It sounds like a lot of money but it’s about $9 per patient per year, enough for $1.80 per GP encounter each year. I haven’t seen how mine could have saved any money. We haven’t seen any actual savings realised, it’s about as empty & meaningless as my MHR records.
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