Sunday, November 01, 2015

And I Used To Think The PCEHR Was An Absurd Thought Bubble. This Beats It By Miles!

We had a speech from the Health Minister at the Press Club last week.
Here is the link to the transcript.

National Press Club Address

Minister for Health Sussan Ley's address to the National Press Club on 28 October 2015.
These few paragraphs towards the end really caught  my eye. The key ones I have italicised.
Digital Health
As we’ve seen this afternoon, we are a Government that continues to be focussed on ensuring Australian patients get affordable access to high-quality health care services.
However, like any industry, this should not be the limit when it comes to health policy.
The Prime Minister has made it clear we want to deliver a 21st Century Government that embraces the digital economy.
And health is no different.
We need to embrace digital health and innovation in the health sector if we are to deliver better integrated care.
Most importantly, we need to embrace the concept of personal choice – ways to empower patients to build a healthcare model that suits their individual needs.
When we talk about innovation, automatically our minds go straight to new technologies in the treatment of diseases, whether they are a diagnostic camera, a bionic arm or the latest breakthrough drug.
These are certainly essential to the future of health care in this country and we must continue to innovate.
This is why this Government set up our landmark Medical Research Future Fund to identify and co-ordinate national health priorities, as well as continued support for individual research projects through the NHMRC.
However, it’s time we reset the agenda when it comes to digital health and innovation and open our minds to the wider possibilities available.
As consumers, digital health has obvious benefits when it comes to the storage of our personal medical information that will vastly improve the way diseases and conditions are diagnosed and managed for Australian patients.
This concept is also designed to support doctors and other allied health professionals with accessing patient information at their fingertips, will help deliver better health outcomes for patients the first time and cut down on unnecessary risks and inefficiencies in the system currently frustrating doctors.
That’s why this Government has committed to revamping Labor’s mishandled Personally Controlled Electronic Health Record into a model that is easy to use and understand for patients and health professionals.
Admittedly, we could have walked away and put it in the too hard basket.
But as I said earlier, we are committed to delivering 21st Century Government for Australian patients.
One of the great criticisms of Labor’s model that was that it could not be used unless a patient signed up, rather than an all-inclusive system that simply gives those consumers who do not want their medical history made available the option to opt-out.
Therefore, in order to address this issue, I can announce today that all-inclusive trials of the Government’s new My Health Record will commence in early 2016 for around 1 million Australians.
The trials will be held in Far North Queensland and in the New South Wales Nepean Blue Mountains region.
But the great digital health revolution lies literally in the palms of consumers.
We now live in an age of smartphones, watches and wallets.
So, what if we, as government, got out the way and gave consumers full access to their own personalised health data and full control over how they choose to use it?
What if you, as a consumer, were able to take your personal Medicare and Pharmaceutical Benefit Scheme data to a health care service; to an app developer; to a dietician; to a retailer and say how can you deliver the best health services for my individual needs?
It’s a revolutionary concept in health – but it shouldn’t be – given it’s already happening with industries like finance across the globe.
Therefore it now really becomes a question of why not?
Why can’t we allow people to use their own personal health information in the same ways they would to access and customise a banking product?
Why can’t we allow people to create a health portfolio of products and services customised to their own needs simply by providing their data?
Why can’t we allow someone’s doctor to use an app developed on the free market to monitor their patient’s blood pressure at home following an operation, or keep a real time count on their insulin levels?
Why can’t we keep informed of our parents’ health well-being via digital connections so they can remain in their own homes, rather than prematurely entering residential aged-care?
The Answer is – we can and allowing consumers open-source access to their health data is the way to do it.
As I said earlier, this is what delivering 21st Government is all about and something I am keen to explore as health minister to better support the patients of this nation and give them greater control over their health and how they manage it.
----- End Extract.
So it seems the Minister is thinking about providing access for individuals to their MBS and PBS data (which is currently available view the PCEHR) on their smartphone or PC (and maybe other parts of the PCEHR as well). At present, of course, the smartphone apps and access mechanisms don’t exist but the Minister seems to believe the market will provide.
Right now - having checked a day or so ago - the PCEHR is about as clunky and mobile unfriendly system you can find. Each test or medication is located by date and time and has to be opened to find out what the record contains.
The questions that immediately come to mind include:
1. Is the PCEHR going to be updated to support mobile interaction (we can assume there will also need to be an access API that manages security, time-out etc.)?
2. Is the PCEHR to be expanded to hold all manner of consumer contributed data?
3. What information / data standards will govern the information held in the expanded system?
4. Or is the Minister actually talking about a new and different system to be delivered by the private sector?
5. How will clinician interaction with all the planned information be managed - and will they be required to review it?
6. How will the necessary updates and operational expenses be met? Will consumers be charged etc.?
7. Do any actual diagrams of information content, flow and functionality actually exist?
8. Has any work been done working out what information is useful for consumers and how does that match what is useful for clinicians?
9. Are there development funds to deliver what the Minister seems to be talking about?
10. Just what relevance does all this have to having clinicians being enabled to do a better job caring for patients?
Feel free to add your own! The more one thinks about all this the more the questions around just what is the system for, who is it meant to serve, what evidence is there for such a system and what actual analysis has been done to take the ‘thought bubble’ to any sort of reality.
Why do I have a nasty feeling that all this may have been designed on a companion napkin to the one that gave us the NBN - with a comparable amount of detail? Anyone who is able to allay my concerns I look forward to a comment from!
We have the precedent of the way the PCEHR was suddenly dropped, ill conceived, upon us. Surely the same thing won’t happen again? Why do I have this terrible feeling it just might?


Anonymous said...

This Minister needs to come back to earth. She has been sucked up into the eHealth vortex by the fast talking spin merchants and she clearly has absolutely no idea how stupid are some of her comments - she has just got carried away.

The best advice I can give her, if she is prepared to take any, is to immediately sit back and quietly read very very carefully the riveting article by Dr Lisa Rosenbaum in the New England Journal of Medicine [NEJM]:

Transitional Chaos or Enduring Harm? The EHR and the Disruption of Medicine
N Engl J Med 2015; 373:1585-1588October 22, 2015DOI: 10.1056/NEJMp1509961

She might have a pilots licence but if this is how she plans to NAVIGATE health into the future I for one and I am sure all the Peak Bodies will not be getting on her aeroplane. You are right David, it looks as though her flight plan was done on a paper napkin while flying through storm clouds. Oh, and if she keep up this line of rhetoric she will wreak untold destruction on the Government and her Leader Prime Minister Malcolm Turnbull.

Let us hope one of his advisers is taking serious notice.

Anonymous said...

The only constant over the years are the public servants who advise the politicians.

Until they are cleaned out of the system the same voodoo magic solutions will be promoted and adopted.

Terry Hannan said...

Well stated by David and Anonymous. The NEJM quote is very appropriate as it echoes many other recent publications stating and confirming how eHealth technologies have in general, not filfilled the original hype we all felt should happen. This echoes Coiera's "Why is eHealth is so hard?"
In complete contrast over the last 3 months I have seen in Chile a wonderful adaptation of a Portuguese-base eHealth system that;
1. Is used by clinicians
2. Its implementaiton is directed by COLLABORATION across the whole of the health system
3. Nurses are a major driving force for implementation, adapatation and evaluation-a physician heads the team but is the "integrated" leader of the system
4. It is paper less in the ED and expanding into inpatient care
5. Real-time clinical data is used daily for health care management and delivery. Actual waiting times for patients is observed in real-times e.g on one day a patient's wating time had extended to 48 minutes and this was a signficant concern to the eHealth team
6. patients make their own appointments by web or phone.
7. The system has been paperless for 3 years
8. Actual health care measurmetn data suchs a ICD codes are available DAILY
9. Clinicians-physicians/surgeons define and enter their Clinical Workflow schemas directly into the system thus allowing comparison of care plans across the system
10. On the 2nd November the system is going "live" in a regional hospital linked to the main hospital making the system interoperable and standardised.
11. In going live the eHealth Team-Drs/Nurses/Pharmacists/HIT/etc are all on hand - "sleep overs" - to provide 24 hour support to the installation. It puts COLLABORATION at the forefront
12. The eHealth implementation teams in evaluation meetings that are healf weekly interact with hope, enthusiasm and professional discipline
What a joy to be here and participate.

Bernard Robertson-Dunn said...


So, the system exists to support clinicians and is an aid to health decision making.

So, it's not a dumb, supposedly patient controlled, half-arsed, national database/IT system attached to the internet and easily accessible by the government and law enforcement agencies.

What a good idea. A system that health professionals want to use because it makes them more effective.

Why didn't we think of something like that? I suspect we did, but the idea wasn't listened to. Tin ear and/or not invented here syndromes.

Anonymous said...

I am sure app developers will be keen to get access to the PCEHR. It will be free but you will then find yourself targeted with advertising related to any medical condition you have. They might have a little trouble handling the pdf pathology reports and enormous CDA documents however, but the money they earn selling your private info will fund them to achieve that.

I am sure the minister is well intentioned but she is being led up a very dangerous path by the department. To his credit, Tony Abbott as health minister saw through the bullshit and was a very good health minister. If he has time perhaps we could ask him to do some mentoring on the sick culture of the health department. Its a modern day cargo cult. The have all the trappings of doing something useful, apart from the actual system itself.

Anonymous said...

My money is on apps are being built for the department by NEHTA and ACeH will end up being a software support house, free enterprise will be locked out.

We have seen nothing yet I fear

Anonymous said...

Perfectly correct - November 02, 2015 1:25 PM - the PCEHR snowball has reach critical mass. It will just keep rolling downhill feeding consultants and bureaucrats for many years to come. Because there is no shortage of money to keep putting into the PCEHR black hole there is no reason to call a halt, despite the fact that all the evidence in plenty of other countries, suggests that is the best thing to do.

The Minister thinks its a wonderful way to cure the deep seated problems in our health system - to her mind nothing else offers an acceptable way forward. She is like the trumpeters, drummers and flag bearers of the first world war - leading the charge across no-mans land - until dropped by enemy fire.

Anonymous said...

Nehta building apps and ACeH running software support? Nehta can't manager document based specifications let alone develop and maintain software, the few 'software' products they do put out are hardly done in a well enegineered a day quality focused manner, no disrespect to the developers I would assume it a lack of care or investment by the management.
At least with NEHTA specifications we can glaze over the inconsistencies and fill in the gaps and no harm done, but apps running on consumer devices? Please have you tried using the consumer portal on the PCEHR