The relaunch of the UK’s patient.co.uk website, with plans to offer a series of apps, including one that will allow patients to make medical appointments on their smartphones – according to eHealth Insider – has got me thinking about the lack of anything that compares even remotely in Australia.

Patient.co.uk describes what it is offering as “Trusted Medical Information and Support”, and I couldn’t help but compare the link it offers to a Guardian story which quotes a report by US scientists on the dangers of sugar to one our Medical Observer ran just a day or so ago, in which some of our scientists condemn their US counterparts’ call for measures to curb sugar consumption.

The expert opinion in Australia, it seems, is that tooth decay is “the only disease proven to be related to excess frequent sugar consumption” and “sugar is just another form of over-consumed calories … no more metabolically deadly than starch or fat calories”.

That’s not the opinion of Dr Robert H. Lustig, one of the authors of the US report, which was also picked up by Time magazine. Lustig’s 2009 lecture, “Sugar: The Bitter Truth” [below], sparked a New York Times piece by health writer Gary Taubes posing the rhetorical question, Is Sugar Toxic?

When you have such diversity of opinion, it seems to me that patients need all the trusted information they can get.

If I were writing on health, I wouldn’t be prepared to just present two sets of opposing opinions. I’d want to know why doctors in Australia seem to be taking a more benign view of the medical implications of sugar, and the potential for its role in commerce to influence research and government policies.

Having read  UK nutrition authority, John Yudkin’s 70s book, Pure, White and Deadly, which linked sugar to type 2 diabetes  and elevated triglycerides, I’m not so sure that Lustig isn’t on to something.

In an environment in which television seems to be constantly switching from food programs to radical weight loss programs, it would seem to me to be a worthy topic for, say, Q&A.

Today’s Sydney Morning Herald picks up on a study that showed electronic prescribing systems in two Australian teaching hospitals dramatically reduced medication errors.

I’ve reported earlier on some fascinating findings from e-prescribing studies,  including the fact that they may enable inexperienced doctors to wreak havoc through being forced to choose an actual drug, rather than scrawling something illegible and hoping someone down the line turns it into something sensible.

This study, which involved a medication chart audit of 3,291 admissions at two Australian teaching hospitals, one of which used the Cerner Millennium e-prescribing system in one ward, and the other iSoft’s MedChart system in two wards, also indicates the potential for ingenious stuff-ups, including some cases where doctors accidentally pressed the wrong button and ordered the wrong drug. Fortunately, those instances did not endanger the patients.

Study leader, Professor Johanna Westbrook, director of the centre for health systems and safety research in the Australian Institute of Health Innovation at the University of NSW, said this research showed reductions in errors of between 57 per cent and 66 per cent.

Anyone with the slightest idea of large-scale software development would have been staggered by the surpassing silliness contained in yesterday’s piece in the Medical Observer, in which “ehealth consultant” David More trots out his analysis of the problem which has brought the desktop software side of the PCEHR project to a temporary halt.

According to More, it would have been terribly easy to avoid trouble: “Had they planned properly they would have had a consistent data model for all the sites and they would have noted that there was this issue [at the outset],” he said. “It just reflects incompetence, frankly. If they knew what they were doing they would have addressed these problems before they started.”

The only illumination one could gain from that is that More simply had no idea of the cause of the problem, no inkling of a solution, and insufficient humility to admit that in truth, he’s not much of an ehealth expert. It really is long past time lazy journalists scratched him out of their sadly tattered contact books.

The very idea that you can anticipate every problem before you begin a hugely complex IT project and construct a data model that uncovers every deviation is ludicrous.

The very nature of software development is that it’s a process of getting things right. The recipe is largely the following: Develop, test, identify bugs, fix them. Endlessly repeat.

What happened in this particular case is that the wave site developments were a dynamic operation, with the developers constantly engaging with NEHTA staff to identify problems and challenges. As issues arose, NEHTA made changes to the specifications to address them. In parallel with that, the specifications were being run through further quality assurance testing.

As the work proceeded through 2011, NEHTA kept the sites informed about the changes that were being implemented to resolve their concerns, allowing them to integrate them in the work.

What when wrong, essentially, was that in October, the change log was finalised. The list of issues NEHTA provided at that point of things that would be fixed in November omitted a number of new items that had been included in response to feedback or problems, or new issues that were still to be identified during testing in November.

That meant developers working on the October change log would have had to upgrade their software later to reflect the changed specifications.

NEHTA decided that rather than have that happen, it was better to call a halt, have everyone build to the November specifications, and deploy the software once.

The main impact is that they deploy later than expected. Rather than February it’s more likely to be May. Of course this will be worked out between NEHTA and the sites, but it’s the sort of rational reaction coming from sites, rather than the sort of hysteria coming from some commentators.

Anyone who’s actually involved in doing ehealth, as opposed to just talking about how others should do it, will know that you have feedback loops on early versions of specs to later ones. They will also know that keeping a complete change log is essential. That is how you address this sort of issue before the project starts. Data models have nothing to do with it.

It took a couple of days for The Australian and the usual suspects to catch up with the news of the problems with the specifications for the PCEHR which I reported on Sunday and again yesterday, which may explain the enthusiasm with which they have greeted confirmation of the story in a statement from NEHTA.

The Australian described it as “the latest blow for the Personally Controlled Electronic Health Record (PCEHR) project”. One can only presume they are scoring their own punches at the system – pretty well all of which have been low and wide of the mark – because I can’t recall any earlier blows. Concerns and criticisms surely don’t count, do they?

The PCEHR project hasn’t been perfect, largely because of the completely unrealistic timelines imposed by former Health Minister, Nicola Roxon, but compared to the record of IT development by federal and state bodies, it’s been remarkably smooth sailing.

That doesn’t mean that the problem isn’t serious. The fact that conflicting specifications seem to have been delivered last November is not something that instills confidence in the development and clinical community, but on the other hand, the fact that it was identified relatively quickly is surely a plus.

To say, as that well-known anti-NEHTA blogger David More does, that “the wheels have fallen off” and “NEHTA is utterly incompetent and is becoming the instigator of yet another failing over-reaching national ehealth program” is surely premature. Typically, of course, there’s a detectable edge of glee and self-congratulation, with More clearly including himself in the ranks of “the wise men who said you should learn to walk before running”.

Unlike More and The Australian, I’ve been speaking to people in the vendor and implementation world I regard as infinitely wiser. One of them described the situation as “not a show-stopper by any means”.

The developers were scheduled shortly to begin CAP testing – I presume that relates to clinical terminology testing under the SNOMED CT arrangements, but I invite correction – and that’s going to be put back by three to six weeks, assuming that there isn’t some serious issue that hasn’t yet been hinted at. The July 1 deadline is being seriously tested as a consequence, but that seems to me a political imperative, rather than one based on prudent judgment.

According to one of my vendor sources, “Some people have an agenda that they want to see the PCEHR fail. We want to see it work. The delay is understandable, and we don’t have a problem with it.”

Over at the Healthbase blog, Dr Eric Browne claims that there are critical failings with the HL7 Clinical Document Architecture (CDA) underlying the PCEHR’s messaging and calls for an end to all further work in this area, pending a thorough review.

“Having studied both the HL7 specifications in detail as well as dozens, if not hundreds of examples of CDA documents from around the world over the past 5 years,” he says, “I have come to the conclusion that there are significant safety and quality risks associated with relying on the structured clinical data in many of these electronic documents.”

His concerns arise from his study of six sample discharge summary CDA documents provided by NEHTA, and the fact that “data can be supplied simultaneously in two distinct, yet disconnected forms – one which is ‘human-readable’, narrative text displayable to a patient or clinician in a browser  panel;  the other comprising highly structured  and coded clinical ‘entries’ destined for later computer processing. The latter is supposed to underpin clinical decision support, data aggregation, etc. which form much of the justification for the introduction of the PCEHR system in the first place.”

According to Eric, the human readable data in the NEHTA examples bore no relationship to the coded data, to the extent that the entries looked fine in the discharge summaries, but according to the computer code the patients were all dead, one of them having been killed off at birth, according to the record.

It’s a rivetting piece of information, but one of my sources says that the data displayed in the live system is generated directly from the raw data. He suggests that the NEHTA samples were not representative of the way the system works. “They were samples that were not generated on a live system by a clinician.”

I would have thought that genuinely wise men would want to clarify issues like that before breaking the glass and pressing the big red button.

I understand that NEHTA’s clinical lead, Dr Mukesh Haikerwal, will be outlining the issues to medical colleges at meetings in Melbourne tomorrow. We’ll probably learn a lot more at that point. In the meantime, should we not perhaps be discovering whether the victim is deceased or even critically wounded, rather than trying to hang the accused?

The NEHTA lead sites involved in the roll-out of the PCEHR are in a state of bemused uncertainty, as they await details of the specification problems I wrote about yesterday. The mass media, medical and trade press, and for that matter the blogosphere and Twitterverse seem still to be unaware of the problem.

As I understand it, CEOs of the sites were called to a briefing last week and told to pause the roll-out of their implementation programs due to a potential clinical risk.

While reports I’ve heard suggest that the atmosphere at the sites is still positive, there is some anxiety at the fact that they have not yet been told about the extent of the problem.

Those details are likely to be made public this week.

Ironically, one of the wave sites, Hunter Urban Medicare Local, formerly GP Access, hit the local press today, with news that it would roll out PCEHRs over the next few weeks, ahead of the national launch on July 1. There is a very real prospect that initiative could face delays, and possibly significant delays.

I’ve just heard a disturbing report from the implementation community that some problems have arisen with the specifications for the PCEHR.

I understand that the problems involve a discrepancy between some of the specifications released to the different wave sites, and that an announcement will be made this week.

My information suggests that the problem does not affect the work being done by the national infrastructure partner.

I am in the dark, at the moment, as to the effect this will have on the planned roll-out of the PCEHR on July 1, but I am told that the problems are serious.

I’ll try to keep you updated.

As I have pointed out in the past, there’s a widespread view that HCN shot itself in the foot when it declined NEHTA’s invitation to join the desktop vendors’ panel, on the grounds that the funding being offered to make Medical Director  compliant with the government’s ehealth standards was “just laughable“.

It seemed pretty clear that if Medical Director were to avoid losing ground to its competitors, it would have to do the work in any case … and it wasn’t going to take anything like the 10 to 15 staff years that CEO John Frost claimed in what was his then characteristic gunslinging style.

That particular shoe has now apparently dropped, with the story in Pulse IT that Medical Director has now gained health identifiers functionality, and the vital Clinical Document Architecture capabilities that will allow users to receive hospital discharge summaries and exchange referrals [and eventually, presumably, follow-ups] with specialists and allied health professionals.

There is also evidence that HCN has put away its six-shooter and – unlike the MSIA, which is still engaging in alarums and excursions via The Australian – is speaking very positively about the government’s ehealth agenda.

“HCN is committed to the government’s eHealth strategy and will ensure that those aspects of eHealth that are important to our customers and their patients are delivered,” CEO John Frost told Pulse IT.

“Over coming years the increased use of IHIs will, we expect, have a profoundly positive effect on reducing the incidence of misidentification which today is a major cause of medical misadventure.”

So much for Karen Dearne’s increasingly frantic Henny Penny exercises.

I was chatting to a GP friend on Saturday night at a Royal Tennis presentation dinner [at which, wonder of wonders, I picked up a minor trophy], and was fascinated by her suggestion that one reason patients haven’t been active participants in their healthcare is that in too many cases they believe that they can treat their bodies as they please [not playing regular bouts of Royal Tennis for instance], and that it’s the GP’s job to keep them healthy.

I was reminded of that this morning when I read a piece by Information Week columnist Paul Cerrato, suggesting that the main reason the public doesn’t sign up for personal health records is: “They don’t really care that much about their health”.

Cerrato says concerns about security and privacy and the reluctance of providers to share patient information don’t help, but “at its core this is about apathy”. His view is that my GP friend is correct:

Most Americans care more about their cars than their health. They know more about automotive specs than they do about physiological specs. Similarly, most people want to see a doctor only when something breaks down, and then they expect a pill or procedure to make things right, just as they expect their car mechanic to fix their cars. Healthcare for most Americans is about having someone else “make it better,” not about personal responsibility.

His view, however, is that we shouldn’t give up on electronic health records, despite the fact that research indicates only roughly 10 per cent of  patients use them.

There are signs, he suggests, that that figure can be greatly improved.

The Dossia Consortium, for instance – a co-operative effort by companies including AT&T, Intel, and Walmart aimed at encouraging employees to become more active in their own healthcare, largely because healthier employees lead to lower employer and employee healthcare costs - has seen some of its members enrolling as many as 80 per cent. of employees.

Then there’s the Continua Health Alliance, which is working to create a system of interoperable personal connected health solutions and extend them to the home.

“A lot depends on how much the client company promotes the service and the kinds of incentives it provides employees,” says Cerrato.

I hope the government keeps that in mind, as the target date for availability of Australia’s PCEHR rapidly approaches.

After that less than stellar performance in the Sunday Age [below] Tim Barlass redeems himself with a fascinating piece about a trial in rural NSW in which elderly patients given a broadband “medibox” which monitored details of blood pressure, heart rate, blood oxygen and weight and logged them remotely to doctors, demonstrated a dramatic decrease in hospital admissions, and shorter stays.

Fifty patients in NSW with an average age of 87, suffering serious heart or lung conditions requiring regular bouts in hospital, were enrolled in the six-month trial last year, which resulted in faster preventative action.

If you read the Sunday Age story on the $6000 grant to doctors to encourage them to participate in telehealth, you’d more than likely be convinced that it’s been one of those  gravy train fiascos in which incompetent politicians and bureaucrats paid doctors a lot of money to buy technology that they could – and in some cases did – pick up for free.

The heading, “Free Skype ‘much better’ than Labor’s $7.2m telehealth grant” implies that, and so – sort of – does the first paragraph: “Rural doctors received $7.2 million from the federal government for software to enable them to communicate more easily with specialists, but some found downloading Skype was a better option.”

It gets worse. The story quotes “the head of a private nursing service” claiming that “doctors who downloaded various paid software programs found they were not compatible”.

You can judge from the comment thread how readers responded. Too many readers took  the story at face value and responded with predictable insulting remarks about doctors, politicians, each other etc. (I am more and more convinced that newspapers of record such as The Age and Sydney Morning Herald should be taking the lead of some northern European newspapers and only printing online comments from readers who can be identified, as was long the requirement for letters to the editor.)

If you’re computer-literate, or if you recognise the signs of not particularly good journalism, however, you would be asking some serious questions about this story.

You’d be wondering if the reporter, and for that matter anyone in the news production chain – news editor, copy taster, sub-editor, check sub, chief sub-editor etc – was aware that video-conferencing requires hardware as well as software, and that telehealth is vastly more critical and complex and makes demands in terms of resolution and security, management and logistics than what one might require for conducting a casual video chat.

You’d be wondering perhaps if any of them had read the excellent piece in the November issue of Pulse IT, in which Chris Ryan, Principal Telehealth Consultant at Attend Anywhere, explores the issues and raises the sort of intelligent questions that the Sunday Age story, alas, comprehensively overlooks.

The Sunday Age reporter has cobbled together a cheap piece of tabloid innuendo, rather than a legitimate piece of journalism. In fact, the story self-destructs, as you discover if you bother reading on to the concluding two paragraphs:

A federal Department of Health and Ageing spokeswoman said the government was ensuring access to technical advice and that the payment to set up digital consultations was not meant only for software.

”It is paid to encourage change in the way doctors provide services, and recognises that incorporating telehealth into everyday work flows represents a significant change to traditional practice,” she said.

At that point you’d understand that the opening paragraph is complete bunkum. For one thing, it’s highly unlikely that rural doctors actually did receive $7.2 million from the federal government for software. The $7.2 million is presumably the total amount of the applications from 1200 doctors across Australia. I’d suspect the majority were not rural doctors at all.

And the $7.2 million is not just for video conferencing software.

There’s a lot to be done if Australia is to achieve worthwhile improvements in healthcare through telehealth. Several initiatives are already under way – they’re mentioned in Chris Ryan’s piece – but they must be co-ordinated nationally, and carefully managed. Doctors need to be given clearer direction so they can make the right choices.

As Chris Ryan points out, “Virtually no one giving advice from government, academia, industry or the health sector actually uses video conferencing in the way that they are asking others to – i.e. daily in their own offices to talk with lots of different people in different organisations, including on an ad-hoc basis.

“This is indicative of the human, organisational and technical issues involved. It’s not as straightforward as people think. If people do use video conferencing at work, it is most likely conventional technology and usually within their own or ‘joined up’ organisational networks, not what it is needed. It is no wonder that sometimes it appears to be a case of the partially-sighted leading the blind.”

I’d suggest that “blind” is probably too generous a description for this effort by the Sunday Age. At best, I’d suggest “lazy and ill-informed”. At worst,”irresponsible” and perhaps even “mischievous”. It’s demonstrably not up to Fairfax’s usual standards of journalism.