Quote Of The Year

Quote Of The Year - Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"

Sunday, October 21, 2018

At Least One Acknowledged Global Expert Thinks The #myHealthRecord Is Going In The Wrong Direction.

This appeared late last week:

Game changer: Creator of FHIR writes about approaching critical mass and a growing data sharing revolution

Grahame Grieve | 17 Oct 2018
HL7 is close to publishing the fourth milestone release of the FHIR standard at a time of increasing uptake that the US Office of the National Coordinator for Health IT recently said could soon approach critical mass. These are exciting times.
In a blog post, ONC's Steven Posnack and Wes Barker wrote that the US "might be at a turning point when it comes to the adoption and implementation" of HL7's FHIR standard, supercharged no doubt by the integration of the standard by mammoth companies such as Apple.
But there is still much to be done both here and internationally to get health systems sharing patient information and fuelling quality care – which is what our work is all about.
FHIR contains the foundation content for exchanging data about all parts of the healthcare process. It supports exchanging patient clinical summary, care plan management, medication management, diagnostic reporting, as well as clinical decision support, administration, financial management, and even clinical trial administration.
From the beginning, the mission of the FHIR community – which I am privileged to lead – has been to change the way healthcare is practiced by providing the technical infrastructure that allows applications to connect in new ways, ways that erode the barriers to improved care. We’ve seen other industries disrupted by the combination of technologies and scalability that the web offers, and we want to bring that to health.
I should be clear, at this point, that many of the barriers to improved care are not technical – there’s massive cultural, political, legal and financial barriers to improving healthcare. FHIR isn’t solving those – it’s part of a wider movement to change the way healthcare works. But we, the FHIR community, think that what we have to offer is a game changer.
……
There is a window of opportunity here in Australia to leverage all this into something useful.
As I write this, the Senate inquiry in My Health Record is due to report back on the direction of the platform. The MyHR – and the National Digital Health Strategy generally – intends to make good on the vision I outlined above. But our current reality is very different – the system we have is based on an architecture that largely predates the emergence of the current web, and the gap between vision and reality is driving the current political challenges.
We’re about to reinvest in a new technical infrastructure for the national system – still based, for the moment, on the same central document repository architecture. That doesn’t make sense – if we’re going to invest, it needs to be in a solution that care providers and receivers want and demand so they can get improved health care and outcomes. Also, it should be an infrastructure that vendors want to leverage because its benefits are obvious and systemic. Let’s take this opportunity to pivot to a different architecture, one that can break down our silos instead of building new ones.
Real change, however, is bottom up. We don’t have to wait for the senate to decide the future of healthcare in Australia. The world is full of highly motived patients who want to get care differently – see Mike Morris’ story. We’re all patients and we all need better care. Since there’s many barriers to improving care, there’s many opportunities to develop solutions to our challenges. FHIR is just one small part of that picture.
So, today, don’t wait. Ask yourself: how can I make a difference today?
Grahame Grieve is the creator and global project lead of HL7’s FHIR, and the Principal of Health Intersections.
Others have made the same point with the technology being a decade old or so.
If you read Grahame’s Mike Morris story you will realise that the current myHR has a snowflakes chance in hell of enabling such care.
What do you think of the message Grahame is sending and how can we have it actioned.
David.

7 comments:

Bernard Robertson-Dunn said...

I totally agree with Grahame and add a few more reasons why myhr is dead in the water:

1. It has high costs for its principal users i.e. the people who are expected to put summaries into the system, in addition to managing their own systems. Far more people will put data in than are likely to get data out.

2. The government gets a copy, in perpetuity, of all documents uploaded to a myhr unless the person involved actively deletes or cancels their whole record.

3. Future governments could change the legislation in ways detrimental to some or all Australians. No government can guarantee this cannot happen.

myhr is not cost effective, it involves giving highly personal data to the government for no good health care reason and no amount of legislation can protect privacy.

Better communication between health providers is necessary but nowhere near sufficient to improving the delivery of health care. As Grahame says, the mission of the FHIR community ... is to erode the barriers to improved care. Removing barriers is the first step. The next (many) steps are to solve the multitude of problems facing health care. ADHA's vision of Digital Health does absolutely nothing in this area; they just hope that something will come along. Hope is not a strategy.

In the mean time all they are doing is getting in everyone's way and spending money that could be better spent doing more useful things.

Anonymous said...

I was flicked an email over the weekend, the below is an extract that I was interested in. I am unable to find the mentioned review, if anyone can I would be most grateful.

From ADHA.

Digital Health Evidence Review

The Digital Health Evidence Review is due to launch on the Agency’s website on October 17. The review, created by Meredith’s team, describes international approaches to providing people and their clinicians with access to shared digital health information and resources. It has been written for those who want to learn more about Australia's My Health Record and other similar systems around the world that provide shared health information to people and their clinicians.

I would like to commend the team for this piece of work. The Review shows My Health Record’s consumer-centred privacy controls are unique and world leading. Out of the 50 countries surveyed, the Digital Health Evidence Review found:
Only Australia and France allow individuals to edit or author parts of their record
Only 32 per cent of surveyed countries have legislation in place that allow individuals to request corrections to their data.
Only 28 per cent of surveyed countries have legislation that allows individuals to specify which healthcare providers can access their data.

The Review drew on a variety of research sources, including academic peer-reviewed literature, government reports and white papers, World Health Organization (WHO) data, and other information sourced from international governments and agencies responsible for the delivery of digital health services.
The Review has also been independently reviewed by Research Australia, who are welcomed the Review.

Anonymous said...

Digital Health Evidence Review
Cherry-picking, or confirmation bias, at work.
"unique and world leading" - is meaningless. It could mean it is so bad no one else will touch it with a barge pole.
How about they ask other counties why they don't do what only Australia and France do?
Bunch of amateurs.

Anonymous said...

Agree, the world leading bit needs to be qualified, is anyone else following this “lead”?? If so which countries?

I also note the publication date was last week but I cannot find the “evidence”

Anonymous said...

With respect may I suggest you ask Professor Makeham for the evidence and supporting references.

Bernard Robertson-Dunn said...

Anyone know how this relates to myhr?

Vaccine side effects: Australia's world-first surveillance system
https://www.smh.com.au/national/vaccine-side-effects-australia-s-world-first-surveillance-system-20181016-p509w2.html

"A world-first surveillance program that tracks adverse reactions to vaccinations will soon monitor every vaccine on the national immunisation program (NIP).

SmartVax was created in response to the 2010 Fluvax disaster, when a spike in convulsions and fever prompted Australia’s chief medical officer to suspende the flu vaccine program for children under five.

...

The SmartVax system sends patients or parents an automated text message three days after a vaccine has been administered, asking if they noticed any kind of reaction.

If they respond yes or ‘Y’, they are asked if they sought medical attention and sent a two-minute survey to establish the nature, severity and duration and outcome of the reaction.

In 2018 the system captured 25,000 encounters with children under five."

It's dynamic, interactive, has a clearly defined purpose and delivers recognisable and measurable value. And I bet it didn't cost $2b and doesn't slow down GPs.

Anonymous said...

With respect may I suggest you ask Professor Makeham for the evidence and supporting references.

With respect have you seen the ADHA track record in dealing with FOI requests, please see Right to Know for evidence

I am sure though the report will be released soon