news Following a protracted Freedom of Information battle, the Federal Government has finally released a report into the the troubled Personally Controlled Electronic Health Records (PCEHR) project, with one of the document’s main recommendations being that the National e-Health Transition Authority be ‘dissolved’ due to governance issues.
The PCEHR project was initially funded in the 2010 Federal Budget to the tune of $466.7 million after years of health industry and technology experts calling for development and national leadership in e-health and health identifier technology to better tie together patients’ records and achieve clinical outcomes. The project has been overseen by the Department of Health in coalition with the National E-Health Transition Authority (NEHTA).
However, the project has been reported to have suffered extensive problems and has suffered from poor uptake by medical facilities and the public. Due to the issues, on 4 November new Coalition Health Minister Peter Dutton kicked off a promised review of the PCEHR project.
In last week’s Federal Budget, the Government gave one of its first signals that it had opted to continue to progress the project for now, allocating funding of $140.6 million to the project over the next 12 months while it decides its ultimate fate. Following a protracted Freedom of Information battle since January, the PCEHR review was released today. It is available online in full in PDF format.
In general, the report appears to recommend that the PCEHR project continue, due to its important role at the heart of Australia’s future health system. However, it also made a number of sweeping recommendations that would substantially change the governance of the project.
The most dramatic of these is that the report recommends that NEHTA — established in July 2005 as a collaborative enterprise by the Federal and State Governments — be dissolved and replaced with an Australian Commission for Electronic Health (ACeH), reporting directly to the Council of Australian Government’s Standing Council on Health.
“The review of the PCEHR,” the report states, “has identified that whilst a governance structure has been in place within NEHTA, for the PCEHR in the context of eHealth it is in need of significant change as it does not have the confidence of the industry or audience that it is attempting to represent. Multiple factors have contributed to this including a significant broadening of the remit of NEHTA since its inception. A reset of this function is critical to ensure the Australian health industry can continue to evolve with a strong set of foundational capability that will enable operating efficiencies for all providers, whilst driving improved patient care benefits.”
In general, the report found that NEHTA was not well-connected to stakeholders in the PCEHR development. The authority’s board is predominantly comprised of the Directors General of State and Territory Health Departments plus the Secretary of the Federal Department of Health.
“… there are no stakeholders who are active users of the PCEHR on the current NEHTA Board,” the report noted. “Two jurisdictions raised this issue as a concern and commented that they have very little direct engagement in the PCEHR. The Panel also notes that the National eHealth strategy document released in December 2008 identified seven governance principles in which it highlighted the need for appropriate stakeholder engagement and transparency.”
“A number of submissions received, including from Jurisdictions also highlighted the lack of transparency in the decision making process for the PCEHR within the NEHTA structure. A common theme was that the stakeholders’ views were often sought and obtained, but in many instances these views (including those from Clinical leads and reference groups) perceived to be either overruled by the Commonwealth or lost in the NEHTA process.”
The report represents only the latest time that NEHTA has been significantly criticised for its lack of communication with stakeholders. In March 2011, for example, an e-health lobbying organisation representing civil liberties organisations voiced its frustration at the National e-Health Transition Authority and Department of Health and Ageing for not communicating with consumers well enough.
And a Boston Consulting Group review of the organisation published in December 2007 also severely criticised NEHTA for what it said were poor communication skills.
Other major recommendations included in the report include:
- Re-naming the PCEHR project to the My Health Record (MyHR) project
- Establishing various advisory committees to the new Australian Commission for Electronic Health (ACeH)
- Commissioning an external review of the Department of Health’s eHealth functions
- Centralising the system operating of the PCEHR platform to the Department of Human Services (which is well-regarded from an IT project perspective) under contract from ACeH
- Establishing a clinical systems capability group within DHS
- Transitioning the project to an ‘opt out’ model for all Australians from 1 January 2015, to maximise usage (this would automatically see Australians’ data added to the platform unless they explicitly opted out)
- Numerous other smaller modifications
“The Panel has spoken with and received responses from many interested stakeholders of the PCEHR,” the report stated. “Overwhelming support was found for continuing the path of implementing a consistent electronic health record for all Australians.
“A change in approach, however, is needed to correct early implementation issues and to review the strategy and role that a shared electronic health record plays in a broader system of health care. Future focus must see the electronic health record (and associated technical and data foundations) as a fundamental element of our future Health infrastructure and it is the Panel’s view that with intervention and correction, the investment will realise great value for the health industry over time.”
“The value of having a personal health summary to share with selected health professionals will be that relevant information is available at the right time for the right people. Improved access, speed and accuracy of health information will benefit health providers, consumers and Government to deliver greater efficiency, less duplication and waste, safer, faster consultation, greater options for location of health provision and mobility of patients, greater consumer choice, and ultimately better health service delivery overall. There is strong international evidence that data aggregation and management has led to better outcomes and is likely to lead to similar benefits for health care in for Australia.”
opinion/analysis
I don’t want to pre-empt commentary about this important report by laying down my opinion too strongly following its publication. This is a dense document about a complex project, and it will take a while to go through. I am also far from an expert; just an interested onlooker. However, I wish to make several points in brief about its findings.
Firstly, long-time readers of my writing (at Delimiter as well as at other publications such as ZDNet and the Financial Review) will know that I am no fan of NEHTA. The organisation is regarded with contempt by many Australians working in the e-health field, and the PCEHR review released today is only the latest report to severely criticise its engagement (or, perhaps more precisely, non-engagement) with important stakeholders in its work.
I wholly support the shutdown of NEHTA and the distribution of its functions among a new Australian Commission for Electronic Health as well as the departments of Health and Human Services.
I have always been somewhat skeptical of the need for the PCEHR project as a whole. I don’t think that the issue of transportable eHealth records is one that is likely to be solved in Australia specifically, or by the Federal Government. I consider it much more likely that this issue will be solved globally by a consumer-friendly company such as Google or Apple (which will place control of eHealth data in the hands of consumers), rather than by central government authorities.
However, if the project is to go ahead, I strongly support its proposed populist renaming and a move to shift its operations away from Health and into the Department of Human Services. Those watching the Federal Government will know that Health has an abominable reputation when it comes to ICT project and service delivery, suffering central problems with ICT governance. In stark contrast, the Department of Human Services has a stellar reputation for ICT project and service delivery, courtesy of its well-run Centrelink division, which was stabilised and functioned very well under the control of its long-time chief information officer John Wadeson (who resigned several years ago).
Of course this also raises certain privacy issues, especially when coupled with the opt-out model the report recommends. DHS already manages much of Australia’s welfare data, and has concrete links with the Australian Taxation Office’s control of our financial data. Adding health data to that mix is a recipe for a privacy and security nightmare. I will personally likely be opting out of the new My Health Record for these precise reasons. I’m not a fan of Big Brother.
The report’s subsidiary recommendation that privacy and security controls be placed around the project is a necessary adjunct to any opt-out model, although I don’t think go far enough.
In general, as the report notes, this will be a tough project to continue pursuing, and I can see why the Coalition Government has its doubts. I still remain a skeptic of the project, however the consensus of the eHealth sector right now is probably that it has gone too far to be abandoned. Let’s hope Health Minister Peter Dutton agrees to the proposed governance changes. They are most certainly sensible and needed.
Renai. Your last paragraph contains the logic that has driven the entire ehealth sector in Australia over the last decade. This logic has been the unspoken but active strategy of the vendor, analyst and consulting community for continued funding.
It is this ..we have done too much, spent too much, traveled too far to stop now on this important project! So give us more money to keep us going.
In any one else’s language this would in fact be described as throwing good money after bad.
Google bailed on Health, Apple is only just starting with a Health device strategy.
Microsoft on the other hand has been working for years on an open platform for personal health records. HealthVault https://www.healthvault.com/au/en is awesome as in individual/family personally controlled electronic health record. It also acts as an aggregator of thousands of inputs from Quantified Self devices.
Oh and it’s free to individuals. I’m sure DHS could have white labelled HealthVault for a whole lot less than the $140M to keep PCEHR running for one more year.
https://www.healthvault.com/au/en
HealthVault isn’t available in Australia.
yes it is Sorter. I live in NSW.
I sync my Fitbit stats, Endomondo workouts and myFitnessPal calorie tracking into HealthVault daily. it’s a bit geeky but the weight is coming off and all the aggregation is happening in HealthVault.
Oh dear Hubi, When Microsoft first brought out their healthvault they allowed would be users a glimpse of the privacy position. It was that they retained the right to use any stored data for purposes encompassed by external contracts they already had. That disappeared from sight shortly afterwards.
In English, your health data would not be secure. Perhaps not now either, the data are stored off shore and thus not covered by Aussi privacy laws
NEHTA was paralysed by the fact that its Board was comprised of Health Minsters – an impossible conflict of interest.
Security is a potential problem with PCEHR also. If you sign up, your data will be used by govt. Putting control in the hands of Department of Human Services will make that worse.
Finally, NEHTA itself put a lot of time and money in hiring advisers who worked in health: doctors, nurses physios etc. At least part of the problem was that the Health Dept took over control of NEHTA and it, and the NEHTA Board, rejected much of the advice those advisers gave.
Finally, sadly I think you are right Delimiter to be skeptical of the benefits PCEHR will bring. It remains seriously underfunded and is not a patch on its equivalent in New Zealand, Scotland and Denmark.
Hi Peter
When I read about the security concerns raised about my.gov.au and compare that to the privacy and security hoops that organisations like Microsoft go through to ensure they can be trusted I think you’ll have more success in the private sector.
The risk remains that – like Google – they’ll decide it doesn’t make commercial sense and stop a free service, but from a technology, security and efficiency scale you cannot beat them.
Privacy: https://account.healthvault.co.uk/help.aspx?topicid=privacypolicy
Security and compliance: http://azure.microsoft.com/en-us/support/trust-center/security/
The issue with private health record repositories is getting health providers to provide data to them. Health records frequently contain clinical notes that were never intended to be seen by patients, only by other health providers. Making these clinical notes available to individuals and having clinicians agree to that is a huge hurdle.
There is also the issue of electronic interoperability. Getting health systems providers, public and private, to integrate their systems with a private provider in a standards based way is an expensive exercise. Without government assistance and financial incentives to do so it won’t happen.
These are both huge hurdles to overcome and, to my mind, make private electronic health records infeasible.
I doubt I’d use a commercial entity for eHealth, it’s just not something Google/Microsoft/Apple should know…
I would be happy if the actual data was stored in a portable format somewhere I could control it, such as on my home PC, and it could then be transported to each medical authority via smartphone etc.
I feel that doing that negates much of the advantage of having an e-Health record system, paticularly in an emergency situation.
If you get hit by a bus it may be very useful for the emergency room to have access to your medical history.
A decentralised system that is partly sitting on a usb key at your house isn’t going to help at all in that situation.
I actually have an e-health record now, and I feel the underlying design for the system is pretty good, you can controll who can see what and it seems to provide a decent base to start with for your medical records. I feel however the “opt in” nature of it paticularly amongst healthcare providers really hampers its utility.
IE whilst the blood test results I got were all recorded in it, the letter from the specialist back to my GP reporting on the results of having a camera shoved in some interesting places didn’t make. Until I snapped a picture using the medicare mobile app and put it in there myself (which all worked pretty well btw, kudos to the people who made that).
In short I think its a decent base, if they stop screwing around and actually started using it, in parralel with their current system of dodgy faxes and posted letters in a short time it’d be a usable system.
I will say however that they really do need to do some work on streamlining the creation process and having some tutorials on whats in it and how to use it.
The intergration with mygov feels like a hacked up addon that really does compromise the getting started phase though.
Oh, Whilst I use google for lots of stuff and i like “don’t be evil”, no way in hell do I want them selling my medical history to the highest bidder, That kinda thing is what governments are for, not commercial interests (and really microsoft holding your medical records??).
Hi Valen – please explain your concerns over Microsoft?
The EFF gives Microsoft top scores for protecting customer data from government requests https://www.eff.org/press/releases/which-tech-companies-help-protect-you-government-data-demands
And Microsoft’s Privacy and Security standards on the back of many years of the Trustworthy Computing Initiative is completely sound. The FUD on Microsoft really should stop.
Privacy: https://account.healthvault.co.uk/help.aspx?topicid=privacypolicy
Security and compliance: http://azure.microsoft.com/en-us/support/trust-center/security/
My concern wouldn’t be the government getting a look at the records (they get to do that anyway via Medicare), it would be Microsoft (or any private company) having access to them.
Thats my personal choice though, feel free to hand them your records.
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