The PCEHR arrives in the last chance saloon

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Australia has been working toying with the implementation of a National E-Health Record System for at least the last fifteen years. This has been since the release of the National Health Information Action Plan for Australia in late 1999. The mission of the plan was:

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“To improve the delivery of healthcare and achieve better quality of care and health outcomes through effective and innovative use of health information”
You can download a summary of that document (and many others) from this link:
http://ozhealthithistory.wikispaces.com/file/view/summary.pdf/182744435/summary.pdf
The summary of what was being envisaged way back in 1999 makes very interesting reading indeed (p11)!
What will the Australian healthcare system look like in the future?
So what might the Australian healthcare system look like in the future? If firm foundations are laid and if the projects mapped out in Health Online are implemented, then Australia’s future healthcare system could look like the following:

• Consumers and providers, wherever they are located (in the city or the country), will have online access to clinical records, clinical advice, specialist referrals, diagnostic tests and results, and other telehealth services;


• Consumers will have the opportunity to provide general practitioners, specialists, hospitals (public and private) and other health providers with access to information on their clinical histories held in comprehensive lifetime electronic health records (to which consumers themselves would also have access), with appropriate regard to security, privacy and the appropriate use and disclosure of data;


• There will be a seamless delivery of care for the consumer with the right information being available at the time and place where care is delivered — and with greater integration and exchange between health and community sectors;


• Relevant information from medical records will be integrated with clinical decision-support systems;


• Consumers and providers will have ready, electronic access to information to support informed choices among potential treatments and so provide better quality health service at the time and point of delivery;


• Consumers, providers and managers will have access to high-quality data for performance information development for benchmarking and quality improvement purposes;


• All providers will be linked with the key funders of the system (such as private health insurance funds and the Health Insurance Commission) to enable online, real-time transactions, including forwarding referral information and pharmaceutical prescriptions;


• Data will be gathered as a by-product of operational systems to support research into improved promotion, prevention and treatment, and to provide a foundation for public health initiatives generally, while at the same time maintaining privacy and confidentiality; and


• Consumers, providers, healthcare organisations and governments will have access to data that enable measurement of quality of care and health outcomes to inform treatment choices and policy development.

Fast forward fifteen years and where are we, and just how far have we moved down the agenda outlined so long ago?
After the false start of HealthConnect Program in the noughties - which was essentially abandoned when Joe Hockey told Tony Abbott it might cost a billion dollars - in the 2010 Budget the then Health Minister (Nicola Roxon) announced a Personally Controlled National E-Health Record (the PCEHR). This was to go live in 2012 - as it duly did - to a fairly complete lack of interest from both consumers and providers - after many hundreds of millions of dollars were spent. The lack of use, and interest in the system, led to a review by the incoming Abbott Government in 2013. The review then led (for very unclear reasons) to the commitment of nearly another $500 million to be spent in the next three years from 2015 to operate what had been developed and to, by compulsion, essentially force every citizen to have a record within the PCEHR, subject to some trials for this ‘opt-out’ (of having a record approach). The rationale for this approach was that if everyone had a record clinicians and consumers would all then be keen to use the system, as there would be some information to see were the record to be consulted.

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“To improve the delivery of healthcare and achieve better quality of care and health outcomes through effective and innovative use of health information”

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As of the time of writing planning for the trials - to cost $50M are underway and submissions have just closed (early July, 2015), with some pretty concerned responses, on the enabling legislation to create an electronic health record for everyone who is not quick enough, or conscious enough, to opt out of this happening to them.
Late last year Deloitte consulted with a wide range of stakeholders about views on the PCEHR and at least one finding is totally congruent with the fate that has been met by submissions over the years on the topic by many people (including myself). Deloitte reported (p20) the following:
“Some stakeholders feel that input they have provided in the past has largely been ignored. There is also an impost on provider’s time which tends to be uncompensated, this becomes an issue when stakeholders feel their advice and experience is having little impact.”
Here is the link:
http://health.gov.au/internet/main/publishing.nsf/Content/17BF043A41D470A9CA257E13000C9322/$File/Report%20-%20Consultation%20on%20PCEHR%20Review%20Recommendations%20-%20Sep2014.pdf
With this background we get to the title of this short piece (Last Chance Saloon) . Governments of both persuasions and largely the same bureaucrats have been working(?) on National eHealth (and a National eHealth Record) for over 15 years, have spent a fortune and are still trying to work out how to get it right at further expense for the long suffering taxpayer. All the evidence I have seen indicates they don’t listen to feedback - even when it is seriously well informed and responsible - and worse they have, in the most recent consultation round, seemingly kept important research from those responding to the most recent request for submissions.
It is my strong view that if stakeholders do not see comprehensive, well considered and reasonable responses to the significant issues raised this time (June 2015) that it is unlikely stakeholder trust and interest in such projects can ever be recovered. Bluntly, most involved are sick of having bureaucrats simply ignore their contributions for no good reason.
Here is a link to the consultation page and some responses: http://aushealthit.blogspot.com.au/2015/07/some-intelligent-and-hardly.html
This recent poll of the engaged specialist readers of my blog illustrates the level of cynicism: AusHealthIT Poll Number 278 – Results – 12th July, 2015.
Do You Believe The Government Is Serious About Conducting The Opt-Out Trials For The PCEHR Or That The Outcome is Pre-Determined And They Will Just Go Ahead?

They Will Publish And Take Notice Of The Results
3%
(4)

They Will Just Proceed To Opt-Out
82%
(108)

The Trials Won’t Actually Work Or Be Evaluated
9%
(12)

I Have No Idea
1%
(1)

Other Answer Not Covered Above
5%
(6)

Total votes
131

Conclusion: Seems a very large majority think any input from stakeholders and the public will just be ignored.
It is thus vital, if we are not to throw huge sums of good money after bad, that the Department of eHealth Branch starts listening to expert and experienced advice and acting on it. If they do not we will be condemned to another 15 years of grand sounding ideas and hardly any progress on the ground. That this has gone on so long with so little progress just beggars belief!
Use of Health Information Technology, sensibly and based on evidence, can make a major positive difference to our health system. What is needed to realise that promise is dramatically improved leadership and governance (as well as a broad range of skills which are presently ignored), otherwise all hope seems lost.

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“Some stakeholders feel that input they have provided in the past has largely been ignored. There is also an impost on provider’s time which tends to be uncompensated, this becomes an issue when stakeholders feel their advice and experience is having little impact.”

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Dr David More
Health IT Consultant
Dr David More is a Health IT consultant with more than 20 years’ experience in the e-Health area. His blog can be found at aushealthit.blogspot.com and covers all matters e-Health. He may be contacted via the links provided on the blog.