Tuesday, August 23, 2016

The Press Seems To Be Taking A Rather Negative Tone On The MyHR At Present.

These two quite long articles appeared this week.
First we had:

My Health Record: Medics speak up

By Marie Sansom on August 15, 2016
My Health Record: Medics speak up
As the new trials of the My Health Record roll out in Queensland, NSW, WA and Victoria, Government News asks clinicians what might help – or hinder – the progress of the revamped national individual electronic health record.
A bit of history
The idea of a national individual electronic health record has been around for decades, routinely popping up in report recommendations from government health agencies.
It was an idea former Prime Minister John Howard helped spread and one the National Electronic Health Transition Authority (NEHTA) was set up to drive in 2005.
Labour introduced the Personally Controlled Electronic Health Record (PCEHR) in 2012 after two years of GP trials.
But from its inception, the electronic health record has been dogged with problems and fraught with complexities and it still has not had the uptake needed to fulfil the vision of a concise patient record available in an emergency.
Academic Dr Helen Cripps compared the Australian e-health experience to that of Slovenia in her 2011 research paper The Implementation of electronic health records: a two country comparison, and found Australia was making much slower progress.
In it, she lists a whole host of reasons for Australia’s sluggish progress in e-health: the country’s complex health care system, with state and federal involvement and a large private health sector; uneven adoption by clinicians;  problems securely sharing data electronically between GPs and other clinicians; the proliferation of different electronic health record formats and systems; fears about data protection and patient privacy; a lack of national direction; the cost of infrastructure, maintenance and training and a disconnect between government-led implementation and software vendors.
The new Australian Digital Health Agency opened its doors on July 1, and appointed ts first CEO UK digital whizz Tim Kelsey. It is a clear sign that e-health is seriously back on the government’s agenda but what about the clinicians the government is relying on to make the record valuable?
Both Dr Nathan Pinskier, Chair of the Royal Australian College of General Practitioners (RACGP) and Dr Tony Bartone, Vice President of the Australian Medical Association (AMA), have weathered the vicissitudes of the electronic health record over the years.
They spoke to Government News about what pitfalls should be avoided this time around and where the road to success lies.
Dr Pinskier, who chairs the RACGPs expert committee on e-health and practice systems, says there is no question that individuals should have access to their own healthcare data but he believes that basic things need fixing first, such as making it easier for GPs to refer patients.
At the moment, when doctors want to refer patients, for example to specialists, physios and hospitals, they must wrestle with a number of different electronic systems (including Argus, HealthLink and MEDrefer), as well as using fax machines, scanners, emails and letters.
He says the technology was built by software vendors and NEHTA but has been gathering dust over the last few years and there is still no one secure, integrated system of referring people electronically.
“You start electronically, you finish electronically and everything in between is a mish-mash. You change the business model and then it’s really easy to send data to a national repository.”
Prescription for change  
Data quality
Both clinicians say that the value of My Health Record will not be fully realised until there is decent data quality and coverage so that health providers can feel confident using the information.
Dr Pinskier says there are currently eight sources of data within the My Health Record and patients can also add their own data. Instead, he suggests homing in on the most vital pieces of information: bad reactions to medicines, current medications and allergies.
He recalls a hospital doctor searching through a jumble of sometimes conflicting records to find out what medication an out-of-town patient was on. The doctor eventually gave up and phoned the patient’s pharmacist.
“What’s the value if you have all these lists for providers to spend hours trawling through the records?” he asks.
Dr Pinskier says it is worth looking at alternatives, citing international examples such as Boston Open Notes, where local records of healthcare providers are made available to consumers. The patient sees exactly what the healthcare provider sees, which can also help reinforce medical advice, for example about how to take medication.
Lots more here:
Second we had this rather strongly put article:

My Health Record 'dumb and useless': Australian Privacy Foundation

Forget last week's Census debacle. Far more has been spent on an e-health system with little clinical value and fewer than 17 percent of Australians on board.
By Stilgherrian for The Full Tilt | August 19, 2016 -- 04:59 GMT (14:59 AEST) |
"My Health Record (MHR) is not yet a f*** up because hardly anybody's using it, [but] it's a f*** up in terms of how much money the government has spent, and how little they've got for that expenditure," Dr Bernard Robertson-Dunn, who chairs the health committee of the Australian Privacy Foundation (APF), said.
"It's cost AU$2 billion so far, it's costing over AU$400 million every year, but the government has never told us how it has improved health care or reduced health costs. All it is doing is putting patient data at risk."
With the Census, the Australian Bureau of Statistics (ABS) was trying to do the right thing, but got it "somewhat wrong", Robertson-Dunn told ZDNet earlier this week. However, the Australian Digital Health Agency (ADHA) is trying to make access to MHR easier, the data is far more intrusive, and it's continually collecting data, as opposed to the Census' five-year cycle.
Established in 2012 as the "personally controlled e-health record system" (PCEHR), MHR is billed as a "secure online summary of your health information". Its 2015-16 Budget allocation alone was AU$485 million.
But as of August 7, 2016, only 4,029,386 individuals have accounts. That is to say, fewer than 17 percent of Australians have registered.
Apart from 332 million Medicare documents and 4.5 million pharmaceuticals documents, which would have been created automatically, the system contains fewer than 1 million clinical or user-generated documents.
That's a mere 0.25 documents per registered user.
After four years of operation, the vast majority of Australians haven't registered for My Health Record, and the vast majority of registered users aren't using it.
And as Robertson-Dunn said, MHR isn't useful anyway.
"They've built a glorified document management system. It's not really a health records system ... The data is contained mostly in PDFs, which are documents. It's difficult to search them."
If a health record system is to be useful in clinical care, it needs to be complete. That means the notes and data from every visit to a doctor, the results of every diagnostic test, and much more. Outdated information needs to be deleted, and medical data can go stale within hours.
MHR has none of these features. Indeed, MHR's own website warns medical practitioners that they can't rely on its data.
"Clinical information you find within your patient's My Health Record should be interpreted in much the same way as other sources of health information. 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," says the site's FAQ.
As the APF background paper put it, "[My Health Record] is a dumb and useless repository of badly managed documents with no clinical value."
Useless now, MHR is unlikely to get better.
"The sort of stuff that does go into health records, I believe, is going to change in the future, and that pure document management systems like [MHR] is just totally useless, from any perspective," Robertson-Dunn said.
"You could accuse this government of building this system because they want to literally gather data on people to monitor them."
Lots more here:
There is really little to add to all this – other than to point out that there does seem to be a concern from a number of quarters that the myHR might not be the most useful and worthwhile system ever conceived.
One tiny hope is that once they have settled in, and have got their executive organised, that the ADHA might conduct a strategic review of the system to form a view as to the probability of the myHR ever delivering on expectations and whether there may be alternative approaches that might actually contribute more to the quality and safely of care!
There would be a national sigh of relief if this was done properly and the e-Health ducks in Australia could be better aligned with need and potential benefit.
David.

5 comments:

Bernard Robertson-Dunn said...

As one who was quoted By Stilgherrian - the language was a bit strong, but sometimes you have to shout to be heard - I'd just like to make sure everyone understands where I'm coming from.

I am not against the use of Information Systems and Information Technology in Healthcare - quite the opposite. The power of automation is enormous, but only if it is done properly.

IMHO, there are only two outcomes that can justify the use of Information Systems and Information Technology in Healthcare (usually referred to as eHealth).

1. to improve health care, and
2. to reduce the cost of health care.

Unfortunately, MyHR does neither. And in achieving neither, it cannot justify the expense and/or the risks to privacy.

If ADHA concentrates on real eHealth, then all power to it. I will encourage and support it to the hilt.

We will know if it going to (or at least is trying to) because it will need to do three things:

Accept that MyHR is fatally flawed. It shouldn't be too hard for Tim Kelsey and others at ADHA to justify this action; all they have to do is look at the postings and comments on this blog and the sorts of articles that David has posted about today.

Some parts of it can be kept and a different solution to sharing health information can be developed. One that is more effective and less intrusive. It's actually not that hard, if "done properly".

The other two things they need to do is develop an eHealth strategy that shows how they are going to improve healthcare and reduce costs.

One of the surprising things about the ADHA is that the legislation that set up the agency mentions neither. ADHA itself needs to realise that this is the only logical rationale behind its existence.

Let's see what ADHA has to say for itself over the next few months. It has it's and Australia's eHealth future in its own hands.

Bernard Robertson-Dunn said...

A MyHR can contain two health summaries. Definitions are taken from the Glossary
https://myhealthrecord.gov.au/internet/mhr/publishing.nsf/Content/glossary:

Shared Health Summary
"A Shared Health Summary is a clinical document summarising an individual’s health status and includes important information such as allergies/adverse reactions, medicines, medical history and immunisations. Only a Nominated Healthcare Provider can create or update the Shared Health Summary."

Personal health summary
"A personal health summary is a document created by the individual that includes medications and allergies/adverse reactions. This section of the My Health Record is accessible by healthcare providers (unlike the personal health notes)."

So:

If you don’t get your GP to put one up and you don’t put one up, there will be none.

If your GP creates and puts one up, there will be one – A Shared Health Summary.

If you create and put one up, there will be one - A Personal Health Summary – which can be shared

If you both put one up, there will be two.

Anybody care to guess at the answers to questions such as these?

Does this sound confusing to you? To your average punter? - who probably falls into the none category

If none, what use is the record?

What use is two?

If two, which is correct?

Which is reliable in an emergency?

Which is reliable to a pharmacist?

And maybe the biggest question - why two? And personal health notes?

Peter said...

I suspect that MyHR is putting the cart before the horse. It is a good idea but there are so many pre-requisites for it to work well, very few of which are in place yet.
To be useful it needs to reach a tipping point of subscribers and that can't happen until and unless each data provider is digitised. And using the same standard integration patterns - including security etc. I thought NEHTA was supposed to supply those standards and patterns but I the stuff I have seen has not been particularly practical, modern or even useful from an IT design point of view.
The best standards development methods (e.g. w3.org) use a mix of industry and public collaboration with multiple feedback, validation and trial phases. The change management and vendor buy-in aspects are at least as important as the standard itself.
But the approach used by MyHR also doesn't align with modern thinking within IT (even the name harks back to Windows 95 - no-one uses "My..." anymore :-). I said before that a federated approach to the records would work better than an aggregation model. Most people attend the same health provider (or a closely associated one) nearly all the time and emphasising that aspect puts the central MyHR system in a mediator/gate-keeper role rather data owner. That pattern also disperse the risks of holding all the data in a single database and reduces the costs of implementation/compliance.
Bernand, with respect to your comments, I agree - the aim of IT should always be to *support* business operations, not replace them. This may mean automating, and usually does when talking about cost reduction, but your first point is, of course, more important. In that case, I think the best focus is in data presentation, helping the clinician understand what is in front of them. That this is also the growth area in IT is not co-incidence. Context sensitive, user focused, intuitive design is gaining interest in all industries.
I note that this seems to be the approach taken by NDIA, although time will tell if that is substantial or just lip service to the concept.

Dr Ian Colclough said...

Bernard, your points are very well made (August 24, 2016 11:50 AM ). We have been led by muddled thinking for more than a decade. Consequently, today we are confronted with multiple contradictions leading to ambiguities and confusion which reflect a failure, from the outset, to clearly think through what it is that we should have been trying to achieve.

Put simply, the basic principles are that the end result for me (you) (an individual) should be to have a Personal Health Record which relates to me (you) (an individual), which can be trusted, which can be relied upon, which can be shared, and which is mine (yours) (an individual’s); hence MY PERSONAL Health Record.

Most importantly in that context the end result for me (you) (an individual) is that My Personal Health Record must contain two major discretely separate segments:-
1. A Clinical Health Summary: which can only be written to and accessed by authorised registered health service providers and which can be accessed by me but not written to by me
and,
2. A Personal Health Summary: which can only be written to and accessed by me and by my authorised carers, and occasionally (with my specific permission) accessed (but not written to) by my authorised health service provider.

My doctor(s) and health service provider(s) will only rely on the Clinical Health Summary segment for all clinical and other health information pertaining to me.

Another way of looking at this is that My Personal Health Record gives me the unique freedom I need and want with absolute clarity around the two discrete unambiguous segments of My Personal Health Record.

Paul said...

That is exactly what I want - 2 separate segments in my Personal Health Record - one that I can use for my own personal requirements and one that my doctors can use for their own requirements. I should be able to access both but not be permitted to write to or fiddle with my doctors segment. August 25, 2016 9:39 PM describes it very clearly. I think that's what we have always wanted. Why has the Government made it so complex? I suspect it is because the people they have working on it have no idea what is needed.