Tuesday, March 08, 2016

The My Health Record Has A New Web-Site. Some Interesting Material.

This appeared last week:

Updated My Health Record website

Created on Friday, 04 March 2016
The Commonwealth Department of Health have updated https://myhealthrecord.gov.au with information about the My Health Record system (previously known as Personally Controlled Electronic Health Record).
The most interesting bit was under the tab “Got a Letter”
Here is the letter:

You are getting a My Health Record!

The Australian Government is giving everyone in your area a My Health Record. This is a digital health record that can keep your important health information like any allergies, medical conditions, treatments and medicines all in one place online.
Benefits. My Health Record can help you and your healthcare providers manage your health better. Doctors and hospitals can connect to My Health Record to see their patients’ important health information when they need it – like in an emergency – from anywhere, at any time.
Security and privacy. My Health Record is secure and protected, just like online banking, and you can choose who gets to see your health information.
When will I get one? A My Health Record will be created by 15 June 2016 for you and any dependants listed on your Medicare card, or individuals for whom you are the nominated carer. Your record will be created using the information we have about you from Medicare or Veterans’ Affairs. From this time onwards your My Health Record will be available for you to use unless you ask us to cancel it.
What do I need to do? After your My Health Record is created, if you want to, you can see and manage it - go to myhealthrecord.gov.au to start using it. Next time you visit a doctor, ask them to put your health information into your My Health Record.
What if I don’t want one? If you do not want a My Health Record, you need to tell us. You can tell us from 4 April 2016 to 27 May 2016 by going to myhealthrecord.gov.au, calling 1800 723 471, or visiting a Medicare Service Centre. Have your Medicare card and other identification ready.
Where can I find more information? To find out more, read the enclosed brochure, go to myhealthrecord.gov.au, call 1800 723 471, or visit a Medicare Service Centre.
Yours sincerely
David Paull
Assistant Secretary, Design and Operations Branch
Digital Health Division
Department of Health
----- End Extract.
Here is the covering description:

Opt-out Trials

The Australian Government is giving everyone in Nepean Blue Mountains in New South Wales and Northern Queensland a digital health record, called a My Health Record. Over one million people will get a digital health record automatically created for them by mid-June 2016. The My Health Record participation trial locations were announced by the Federal Health Minister in October last year. Primary Health Networks will be working closely with residents and local healthcare provider organisations in these communities in getting ready for My Health Record. The trials conducted in these locations will be evaluated. If this automatic registration to My Health Record in the trial locations leads to higher participation in the My Health Record system, the Government may consider doing it on a national scale in the future
A number of trials of innovative approaches to increasing participation in and use of the My Health Record utilising the current registration arrangements will also be undertaken in 2016. The location of these trials is yet to be decided
The outcomes of the trials will inform decisions expected in 2017 about future strategies for bringing forward the benefits of the My Health Record system nationally.
----- End Extract.
A few questions spring to mind:
1. Where is the discussion of the risks and benefits of this record - privacy, safety etc.?
2. Why can’t you immediately opt out when you get a letter?
3. Just how will Government assess the view of the homeless, internet deprived, illiterate,  mentally incompetent and so on in terms of their being opted in or out?
There are a legion of other questions that all this throws - even before we get to evaluation of the so-called trials.
The question everyone needs to ask themselves is ‘When was the last time the Government gave you something that was good for you without some catch?” - think tax, conscription, compulsory voting and superannuation and so it goes on. In this case it is pretty clear the catch is that the Government want access to all these aggregated health records for their own management and research purposes - certainly without them telling you or asking your permission.
There is virtually zero evidence the mHR is clinically needed - if there was we would be drowning in it to prove what a good idea it is. That we are provided none speaks volumes.
My advice - stay well clear!
David.

9 comments:

Anonymous said...

You can stop worrying as the man who gave you this strategy, Richard Royle, will be overseeing the development and operation of the my health record and the transition of NEHTA to the ADHA.

Bernard Robertson-Dunn said...

Even the Health Department says it can't be relied upon:

How Can I be sure information in the My Health Record System is up to date?

It is safest to assume the information in a patient’s My Health Record is not a complete record of a patient’s clinical history, so information should be verified from other sources and ideally, with the patient.

https://myhealthrecord.gov.au/internet/mhr/publishing.nsf/Content/healthcare-providers-faqs#ia9

and....

What will happen to already existing medical records?

My Health Record will not replace existing medical records. It is an additional tool that brings together a summary of an individual’s significant health information that is important to their ongoing care.

Healthcare providers will continue to take and review clinical notes. It is important to remember that the My Health Record system is not intended to be a communication tool – it will not replace the need to communicate important health information directly to individuals or other healthcare providers treating them.

https://myhealthrecord.gov.au/internet/mhr/publishing.nsf/Content/healthcare-providers-faqs#ia2

So, it's not a primary clinical health record, it can't be assumed to be up-to-date and it's not a communication tool.

And looking at the documents that can be put into it, it's got a lot more than just a summary such that it can get overloaded with detail, all of which is in separate documents that need to be opened separately.

As David says: There is virtually zero evidence the mHR is clinically needed.

IMHO, the only useful thing in the system is a well created and managed health summary for use in an emergency. And it doesn't do even that very well.

Anonymous said...

Re use of pre-existing records in emergency (unscheduled) care; emerging research shows that clinicians need to have a high level of confidence that a record is there to be found and that it will be accurate and up-to-date.

The only place this has worked is really in Scotland where there is in place a national emergency care record system which contains only four very carefully chosen components, not a plethora of bits and pieces.

Key problems in getting this together in Au will likely be; gaining confidence of providers and patients, ensuring the data is accurate and allaying growing privacy fears.(all the problems identified in Trisha Greenhalgh's report: The Devil's in the Detail - published in the UK nearly a decade ago).

Good Luck!

Voldemort

Anonymous said...

It might be dressed up a bit, but it's still the same content-free wasteland as before.

Bernard Robertson-Dunn said...

re: "Re use of pre-existing records in emergency (unscheduled) care; emerging research shows that clinicians need to have a high level of confidence that a record is there to be found and that it will be accurate and up-to-date."

IMHO, the problem in Australia is likely to be that NEHTA and DoH have eroded any confidence that clinicians may have had in the system.

Trust can get destroyed in an instant. In this case it went years ago and nothing has been done to even attempt to rebuild it.

When the level of trust goes down, it doesn't just get to zero, it goes negative.

Registering people for a useless, untrustworthy system will just make it even worse.

If the people in the Digital Health Authority are not aware of this and getting worried, they must be living in some sort of parallel universe.

Anonymous said...

Re: 9.24 am - Trust can get destroyed in an instant. In this case it went years ago and nothing has been done to even attempt to rebuild it. When the level of trust goes down, it doesn't just get to zero, it goes negative.

And in the process the MY HEALTH RECORD brand name has been burnt to a cinder irrevocably.

Anonymous said...

Gosh - 96 votes already on your Poll question and it's only Wednesday !!!

Anonymous said...

@Bernard Robertson-Dunn and Voldemort: Out here in the real world, I have yet to meet a 'urgent care' physician (and by extension a great many other clinicians) who rely on ANY information contained in ANY document. The classic example (oft-cited) is the 'unconscious woman brought to the ED... is she pregnant or not? How do we treat? Is the record up-to-date?' Unmitigated BS. Even if the record was updated last week, the female patient herself may NOT have divulged her reproductive state. It may be a happy secret she's keeping to herself (for now); it may be that even she is not yet aware; it may be there there has been no confirmed pregnancy test at all (in the medical record or elsewhere). It's my experience that any urgent care physician, confronted with a female patient of reproductive age (give or take some) treats AS IF she is pregnant until the clinician him/herself PROVES otherwise. Records (electronic or otherwise) make very little difference to clinical workflow or workup - at the time. Same goes for other patients, other conditions, and other doco (whether paper, scans, referral notes, medication lists/webster packs etc.... There is more than one flavour of "trust" and we need to stop banging on about it.....

Bernard Robertson-Dunn said...

Anonymous March 13, 2016 4:20 PM

Totally agree with you and, according to the MyHealthRecord.gov.au website, DoH seems to agree with you:

"It is safest to assume the information in a patient’s My Health Record is not a complete record of a patient’s clinical history, so information should be verified from other sources and ideally, with the patient"

https://myhealthrecord.gov.au/internet/mhr/publishing.nsf/Content/healthcare-providers-faqs#ia9

Make you wonder what they think its really for.