Sunday, January 15, 2017

Is It Right To Grossly Oversimplify Communication To The Public About The myHR?

This appeared last week:

Personal health records now available online

12 Jan 2017, 10:25 a.m.
Following a Federal Government trial in Western Sydney, local hospitals are now uploading around 570 discharge summaries to My Health Record each month.
What this means is that GPs can easily access information about their patients after a stay in hospital and our clinicians can access important health information about patients that their GPs have uploaded.
As a resident of the Nepean Blue Mountains regions, which also includes Hawkesbury residents, can access their personal health record online and even set access restrictions and add information about allergies, medication and other important health information.
“In the event of a medical emergency, residents will know that their health information is stored safely and securely and can be accessed immediately by emergency doctors if required,” a spokesperson said.
“Pharmacies are also uploading to My Health Record so we can easily see what medications a patient is on – this helps doctors treat you safely if you need emergency care and are unable to communicate.”
More here:
Talk about painting a totally positive picture.
We all know that no amount of enthusiasm can cover up the fact that only few doctors or patients have actually accessed their myHR and we also know that very few patient records have a clinician curated Shared Health Summary that can be relied on to some extent.
To me this reporting should be explaining the way the patient can access their record (if they accepted one (by not opting out)  – apparently 1.9% of individuals declined the offer of having a record – and by explaining just what content they can expect to find and how it may, or may not, make a difference to their care.
They should also be told that the discharge summaries may or may not be complete, will almost certainly have been created by the most junior member of the clinical team, will probably not have been reviewed by senior doctors and will not have been reviewed by the patient for embarrassing content before being posted.
For some reason my most recent discharge summary was posted by a clinical pharmacist with no attempt to obtain consent from me. I wonder why this is seen as reasonable?
As far as drug information is concerned it is all dependent on the individual local pharmacist who may or may not upload information.
At the very least there should be a link in the article to some more detailed myHR information.
This really should be being managed with rather more openness and transparency as far as I am concerned but I accept others may think it is not needed. Comments welcome.
David.

11 comments:

Bernard Robertson-Dunn said...

IMHO, uploading discharge summaries to MyHR a) only works if someone is registered for one and b) is useful only because secure messaging isn't available.

And yes, I agree, MyHR is being oversold. In my experience, if you talk to someone about MyHR, they think it's a good idea to have all their health data in one place.

They become less enthusiastic when I tell them that they need to do most of the hard work themselves - it doesn't happen automatically, which is the impression the government is giving.

Anonymous said...

I believe it is incorrect to protect a central database as the answer, especially in this age. We should be looking at better ways to share information and have the person whose information it relates to be the curator, large enterprises can easily enable information sharing and would be a simple relationship to that information assessment to allow this. I thought part of the purpose of FHIR was to kick start this? Noting FHIR is not the whole answer but at least a monumental opportunity for a mind shift

Anonymous said...

Marketing messages are just that - rhetoric of what the future might be if the future ever arrived. Marketing bullshit is no-way to engage a target audience in the absence of a proven system. The bureaucrats are bereft of ideas, the consultants are full of them(selves).

The bureaucrats believe what the consultants tell them; the consultants tell them what they want to believe. .... and the rest of you grind your teeth and wring your hands in disbelief which has been the case for the last decade. You can criticise the system as much as you like and they will respond "Show us something better" and you won't be able to. So the status quo will prevail and your dentist will tell you to stop grinding your teeth.

Bruce Farnell said...

In answer to the question 'Is It Right To Grossly Oversimplify Communication To The Public About The myHR?' the answer is a definite 'NO'.

All of the reasons given above by others are quite valid. The gross oversimplifications and half-truths amount to nothing more than a lie. The myEHR is fundamentally flawed and no amount of marketing spin or product enhancement will correct this.

There are too many people and funded organisations with 'their snouts firmly wedged in the funding trough'. Yes, you know who you are. They all keep repeating the same oversimplifications and half-truths and will continue to do so - until the money runs out.

Anonymous said...

It's not going to run out. The politicians on both sides have been sucked in far too deep ...... unless, perhaps, maybe someone like Pauline Hanson and Jacquie stir the pot which is highly unlikely, too complex and too far removed from their priority agendas.

Bernard Robertson-Dunn said...

National Digital Health Strategy consultation: What have we learned so far?
https://www.youtube.com/watch?v=RPYMOVl9euw&feature=youtu.be&app=desktop

Anonymous said...

NEHTA - 2006. ADHA 2016. A decade on. How far have we progressed?

Comment to blog dated 4 April 2006 in response to Dr David More’s 04 April 2006 Blog entry headed:
http://aushealthit.blogspot.com/2006/04/nehta-interoperability-framework.html

NEHTA Interoperability Framework – Version 1.0
Dr Ian Colclough said:

Is NEHTA correctly positioned to fulfil its destiny?

NEHTA appears to be evolving into the nation's leading R&D organisation focussed on HealthICT.

If this assumption is correct it will probably be many years before the marketplace and indeed industry will be able to avail themselves of the benefits which may flow from NEHTA's R&D.

In that role NEHTA has many complex problems to solve; problems that the rest of the world has wrestled with well before NEHTA was born and will continue to wrestle with well into the future.

There are no guarantees that NEHTA will deliver acceptable workable answers. In many instances it won't be able to because, as it evolves in its R&D role, it will need to establish further projects to wrestle with new and complex problems as they emerge from the maturation of its current R&D activities.

The ICT industry needs to work closely with NEHTA but not be dependent upon it for outcomes. The jurisdictions and potential end-users should support NEHTA's work where politically and commercially practicable but not allow themselves to be seduced into thinking NEHTA will deliver solutions to all their problems - this year, next year or five to ten years hence.

Rather, the jurisdictions and potential end-users should get on with business as usual and not wait for a magic wand to be waved from above. They should view NEHTA as an R&D organisation with a worthwhile purpose, hopefully one day providing some practical answers which industry may be able to embrace in a commercially pragmatic way.

Anonymous said...

Judging by the youtube video you would think this was a brand new project that had not been touched before. After $2B+ spent I expect them to have a clue, but clearly they don't. This is such a monumental waste of money and simply damages any innovation that is possible. As a tax payer enough is enough. They need to be terminated now, no wonder we can't balance the budget. If this is an example of money well spent we are in big trouble.

Anonymous said...

Re: 3:15 PM particularly prescient indeed.

Anonymous said...

In my experience, discharge summaries invariably contain information that is less than truthful. If that is uploaded to your "MyHR" without consent under the proposed opt-out model (and let's face it, if you are relying on Human Services to contact people to see if they want to opt-out, given the latest Centrelink debacle with communications and letters, that's going to work now isn't it!) it is not at all useful and not something that should be used to "sell" MyHR. In fact, it is way past time MyHR was dead and buried and as we all know, that would help remediate the budget black hole somewhat.

Bernard Robertson-Dunn said...

re: "discharge summaries invariably contain information that is less than truthful"

You've hit the Achilles heel of all health record systems. Data accuracy, reliability, timeliness, completeness and reliability.

A system such as MyHR that a) allows data to be deleted/hidden/not included, b) relies on many people to "do the right thing", c) may contain data that is no longer valid (e.g. different interpretation of results as new medical knowledge becomes available, as more tests are done etc.) d) is potentially inconsistent e) is unmanaged/uncurated from a clinical perspective, is worse than useless.

MyHR has nothing to do with technology, it's all about data. Health data is incredibly complex and this needs to be recognised and accommodated in any sort of health record system.