I have had the weekend to think about what went on last week and I have to say the more I think about what I saw, what I have been told, what others have written and what Government seems to be saying the more worried I am.
Let’s just walk through what we know. As of the time of the Conference earlier this week the Personally Controlled Electronic Health Record had transmogrified into the following.
1. An empty very basic static information style Summary Clinical Record which is linked to an individual persons IHI.
2. An access portal that allows a person who has opted to have a such a record available for their use to populate, or have someone else populate this basic record for access anywhere in the country - so by definition a national system - if not physically one data base a collection of keyed databases.
3. An indexing service which will go around ‘Google bot like’ and find clinical documents which have an IHI attached and keep track of there they may be found.
4. Some form of presentation service to assemble both the basic summary and other records as they are on-line (results, discharge summaries etc.) into something the person and whoever the person authorises can have a browse of.
This seems to me what is being called the PCEHR System
The following provides a little more detail and raises a key issue
Private sector key to e-health rollout, says Roxon
- Karen Dearne
- From: Australian IT
- December 01, 2010
THE National E-Health Transition Authority will be contracted to deliver the $467 million patient e-health record system with private sector help, Health Minister Nicola Roxon has confirmed.
"We will be asking NEHTA to ensure the national infrastructure is delivered to a high quality standard and in a timely manner and to set the standards for how the system will work," she told the E-Health Conference in Melbourne yesterday.
…..
With the Gillard government holding the purse strings, the federal Health department will have ultimate oversight of the project, and including consultations aimed at striking the right balance between security and access to people's private health information.
"I can confirm the government is not going to build a massive data repository," Ms Roxon said. "We don’t believe it would deliver any additional benefits to clinicians or patients – and it creates unnecessary risks.
"Our system is about linkages of data – much of which exists already in various forms in general practices, at the pharmacy, at a hospital, with the maternal health nurse."
…..
"NEHTA will have a managing agent role, with responsibility for operational contract management, as well as development of the PCEHR core standards, national infrastructure and information architectures, and high-level business requirements and design," Ms Halton said.
"The contractors will be known as our national partners in the PCEHR program, as they will be critical in delivering it."
NEHTA will be looking for four delivery partners: A national infrastructure solutions partner (to provide the detailed design, build and integration); a change and adoption partner (to develop a strategy to encourage uptake); a benefits realisation partner (to develop and manage an assessment and evaluation framework), and an external delivery assurance adviser (ongoing oversight of the project).
Ms Halton said it was expected primary healthcare systems would be among the first ready to provide information to the PCEHR infrastructure.
More here:
So there will be a central slab of infrastructure and some services around it contracted and the huge question left hanging is ‘what next’? This is hardly a build it and they will come situation!
What also is needed are among things:
1. Provider agreement to provide their records to be indexed and retrieved - having obtained individual patient consent for this.
2. Interfacing and Information Standardisation of the contents of the provider records - as well as quality control.
3. Appropriate security and privacy controls that ensure any concerns about individual pieces of information being protected are address - citizens tend to want to know where their information is going and why.
4. Modification and updating of all potential feeder systems to conform to appropriate information, privacy, security and integrity controls.
5. A thorough regimen of piloting and testing on a pretty large scale.
6. Some fairly complex legislation to manage professional liability, system governance and so on
One thing that is certain is that, given the contracts for the partners are unlikely to be agreed by March 2011 that the possibility of having much more than a mock up to enrol in as a citizen looks pretty remote.
Additionally on this blog Professor Enrico Coiera has pointed out very recently just how potentially fraught the shared centralised record is. To summarise his view it is as simple as:
“I think I have distilled my point down to 'the SCR is unnecessary' - it is an additional component in a system that works just fine without it. In a distributed system we can have all the information moving, and if you need a summary, you create that in the presentation layer, dynamically. You don't hard wire it into the architecture like some massive goto statement with no scalability or flexibility.”
Given all the issues a static shared record raises I cannot but agree!
This report from the UK just confirms the that the idea of uploaded shared records is pretty problematic and may be just plain dangerous!.
One in ten electronic medical records contain errors: doctors
One in ten medical records on a new electronic database contain errors which could put patients at risk, doctors have warned.
Rebecca Smith 8:15AM BST 17 Jul 2010
Doctors in Birmingham have found that 10 per cent of the records that have been uploaded so far contained out-of-date information including errors on current medication patients are taking or drugs they are allergic to.
These mistakes could put patients at risk if doctors relied on the information in an emergency and administered a drug they were allergic to or gave them a medicine which interacts with one they are already taking.
The system must be halted as it is not safe, doctors said.
So far around two million electronic patient records have been uploaded to the central database and if the error rate was the same nationwide, which doctors say is not unreasonable to presume, then around 200,000 people could be at risk from inaccurate information stored about them.
GP leaders in Birmingham told Pulse magazine that the organisation running the system, Connecting for Health, knows about the error rate and has not taken action.
Dr Robert Morley, executive secretary of Birmingham Local Medical Committee, which represents local doctors, told Pulse: "The fact that in Birmingham 80,000 patients have had their records uploaded, the majority without their consent, and one in ten have been put at risk from inaccurate data, shows we believe that the uploading of the Summary Care Record has to be stopped immediately because they are not safe."
The Summary Care Record has proved controversial after it was highlighted that many people who were sent information saying their records were about to be uploaded had not recalled receiving the letter meaning they had not given proper consent.
More here:
Already, now the AMA has figured out what NEHTA / DoHA are up to there is some push back!
AMA attacks e-health record plan
- Sue Dunlevy
- From: The Australian
- December 01, 2010
THE Gillard government's $466 million e-health record "won't work" , the Australian Medical Association says.
The AMA says it could be dangerous if patients were able to hide information about abortions or their use of anti-depressants.
AMA vice-president Steve Hambleton told an e-health conference doctors would not trust the new record if it did not contain all relevant patient information, and there was a risk of serious medical mishaps if information was kept secret.
And he says only doctors should alter information in the e-health record, which will be offered to patients from July 1, 2012.
"It should only be able to be changed by doctors who understand the implication of what is recorded, and this can certainly be done in consultation with the patient," he said.
The AMA's concerns fly in the face of Health Minister Nicola Roxon's promise that the e-health record would be personally controlled by patients.
Ms Roxon told the same e-health conference in Melbourne: "We understand that privacy is a key concern, and we are designing this project to take heed of privacy from the ground up.
"This will be a truly personally controlled record. That's why we're establishing new consent settings for sensitive information and auditing that doesn't currently exist for any of our records."
Dr Hambleton said if a patient wanted to hide the fact they were using anti-depressants, they might suffer serious adverse reactions if another medication was prescribed. A woman who tried to hide the fact that she had an abortion might leave midwives and obstetricians unaware she was at greater risk of cervical incompetence if she later became pregnant, he told The Australian.
More here:
A second report is here
Doctors resist plan to give patients control of records
Mark Metherell HEALTH CORRESPONDENT
December 1, 2010
PATIENT control over what goes into their electronic medical records faces resistance from medical leaders, who are calling for a delay to the potentially hazardous patient control feature.
Steve Hambleton, the vice-president of the Australian Medical Association, yesterday said that patient control of records should be held off until the electronic records transfer system was bedded down and won the confidence of doctors and patients. The right of patients to hide elements of their records from some health professionals who do not need to access the information has been hailed by the government as a central element of the e-health plan, due to start in July 2012.
But Dr Hambleton said that patients wanting to hide their treatment for depression, for example, raised the possibility of a dangerous medication interaction if the patient was later prescribed painkillers by a doctor unaware of an earlier anti-depressant prescription. Such information needed to be available to all doctors. ''It should only be able to be changed by doctors who understand the implication of what is recorded - and this can certainly be done in consultation with the patient.''
More here:
It looks very much like those who started a decade ago on this are having trouble. What chance do you give Ms Roxon all in a rush?
Roxon must act on e-health by end of year
- Karen Dearne
- From: Australian IT
- December 03, 2010
HEALTH Minister Nicola Roxon must make key decisions on e-health management by the end of the year, including any future governance role for the National E-Health Transition Authority.
Health Department briefings for the incoming Gillard government published today show Ms Roxon must provide direction on the “options for the long-term governance of e-health, including the personally controlled e-health record system (PCEHR) and the role of NEHTA” within three to four months of the election.
The heavily censored documents were released today, in response to “multiple requests for access” under freedom of information laws.
NEHTA is presently funded until June 2012 and has received more than $366 million in funding from the Australian Health Ministers’ Conference (AHMC) and the Council of Australian Government since 2005.
Ms Roxon’s $467 million PCEHR system has commenced under interim governance arrangements, which require the establishment of a Commonwealth steering committee and federal health department advisory group.
The briefing says the 2010-11 budget allocation was intended to cover the first two years of a four-year work schedule, based on an agreed business case for a national e-health records system.
However, the funding does not cover the costs of integrating private and public healthcare systems with the PCEHR, nor financial incentives for participation.
“The national record system will build on existing capability and investments of governments and the private sector, and leave in place existing health information systems,” it says.
“Healthcare organisations and providers will continue to store detailed medical records and clinical information.
“Over time, states and private providers will integrate with the PCEHR when ready, adding to the benefits for patients and medical professionals.”
No details of plans for long-term governance for e-health records or NEHTA’s future are given, as one-page summaries were only provided for matters requiring action within the first two months of office.
More here:
These three paragraphs are the key:
“The briefing says the 2010-11 budget allocation was intended to cover the first two years of a four-year work schedule, based on an agreed business case for a national e-health records system.
However, the funding does not cover the costs of integrating private and public healthcare systems with the PCEHR, nor financial incentives for participation.
“The national record system will build on existing capability and investments of governments and the private sector, and leave in place existing health information systems,” it says.”
Getting back to me overall theme I think it is pretty clear we have a largely unfunded project, which is architecturally questionable being rushed through by some bureaucrats who really don’t get what they have bitten off. And we haven’t even started to consider the issues around what would make the PCEHR sufficiently attractive for users to opt in to. I have yet to hear anything on this other than we will have a communications program - doh!
While I would really love to see success I believe the stars are aligned for an expensive and highly damaging failure.
Everyone needs to step back, we need to harness the enthusiasm developed this week and start planning for what will be a 4-5 year journey that may succeed if not driven by silly political fiat and ignorance. To come back to the title of the blog - they won’t tell because they don’t know and are afraid of ministerial fury. Rightly so in my view - many heads will roll when it is realised what a mess this is turning into!
There is no doubt in my view the light at the end of this tunnel is that of a huge oncoming train!
David.
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