“No public interest” in PCEHR review release

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hearnoevil

news The Department of Health has stated it does not believe there is a public interest case for the Federal Government’s review of the troubled Personally Controlled Electronic Health Records project to be released publicly, despite the fact that Health Minister Peter Dutton has stated the document contains “a comprehensive plan for the future of electronic health records in Australia”.

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 is overseen by the Department of Health in coalition with the National E-Health Transition Authority (NEHTA).

However, in July the Government revealed it had failed to meet it initial 500,000 target for adoption of the system, with only close to 400,000 Australians using the system at that point.

Due to the problems, on 4 November new Coalition Government Health Minister Peter Dutton kicked off a promised review of the PCEHR project. On 20 December, only a month and a half after the review was initiated, Dutton issued a statement noting that he had received its report. “Their report provides a comprehensive plan for the future of electronic health records in Australia,” the Minister said at the time.

However, Dutton has not committed to publicly releasing the findings of the PCEHR Review. As a consequence, in early January, Delimiter filed a Freedom of Information request with the Department of Health seeking to have the full text of the document released under the Freedom of Information Act. Although the department initially stated it did not have a copy of the document at the time of the initial FOI request, a subsequent FOI request showed that the department had by then obtained a copy.

In early March, the Department wrote back to Delimiter confirming that it had found the document, but seeking processing charges of $244.05 for its retrieval and decision-making time regarding the release of its contents.

Delimiter appealed the charges on the basis that there is a significant public interest in the release of the document, given that the PCEHR project is being closely watched as a landmark project which will heavily influence the development of other e-health projects around Australia, and that Dutton has stated the document “provides a comprehensive plan for the future of electronic health records in Australia”.

In what appears to be an unorthodox move, given the significance of the PCEHR review, and the wide-ranging impact of the PCEHR system on all Australians as well as the entire health system, last week the department wrote back to Delimiter noting that the application for charges to be waived on public interest grounds was not waived as there was no public interest justification for the document to be released.

“Giving access will be in the public interest where it will be of benefit to the public at large,” wrote Linda Jackson, Assistant Secretary of the eHealth Policy Branch within the Department of Health’s eHealth division. You can read Jackson’s full letter online in PDF format.

“It is not enough that the information in the document sought is interesting or of mere curiousity value to the public at large. In it also not sufficient that the document is of benefit to the applicant.”

“On balance, I am not satisfied that there is a general public interest, or the interest of a substantial section of the public in the information in the document. There is, accordingly, no basis for me to reduce or waive the charge on the ground of public interest. Consequently, I have decided to impose the charges in full.”

Jackon’s refusal to waive access charges relating to the PCEHR review does not represent the final stage in getting the document released. Delimiter has now paid the initial deposit required for the department to start processing the document. From here, the department will start assessing the case for the document, or sections of it, to be released. If the release of the document is subsequently denied, there will be several opportunities for appeal.

In a Senate Estimates session several weeks ago, Health Department secretary, Professor Jane Halton, confirmed there had been “ongoing discussions” with Dutton in relation to the review, but could not confirm whether there were plans to release the document publicly.

The continued news around the PCEHR review comes as departments and agencies increasingly appear to be interpreting the Freedom of Information Act extremely strictly in the wake of the Federal Election in September, in what appears to be an effort to block the release of critical documents which it would be in the public interest to have released.

Several weeks ago, for example, an attempt by Delimiter to retrieve the ‘Blue Book’ incoming ministerial briefing of Communications Minister Malcolm Turnbull under Freedom of Information laws failed, with the Federal Government as a whole appearing to standardise around interpreting its rights as blocking such documents wholesale, despite the fact that previous similar documents have been released under FOI. Other similar FOI requests have similarly been rejected by other Federal Government departments recently, such as the Attorney-General’s Department.

opinion/analysis
It is simply preposterous for the Department of Health to interpret the FOI Act to claim that there is no public interest in getting the PCEHR review released. A document which the Minister has stated “provides a comprehensive plan for the future of electronic health records in Australia” clearly has a public interest rationale to be released. Consequently, I will continue my efforts to get this document released — as I, unlike much of the Federal Parliament and Government, am directly working towards the public interest.

Image credit: StillSearc, royalty free

13 COMMENTS

  1. The industry would pay for it, don’t worry about that. For what’s involved, 10x that would still be chicken feed. I’ll PM you directly cause I’d pay for it

  2. It defies reality for a bureaucrat to conclude there is no public interest reduction available for an FOI request’s cost on the release of a report into $466.7 million of public spending.

    • They have no skin in it – it is just someone else’s money and plenty more where that come from.

  3. The biggest trouble with the pcehr, is the fact that it isn’t enforced on all health physicians to use it, and as such when me or my wife look up details, there is practically none, as doctors don’t want to be sued for being incompetent and misdiagnosing people. until such a time as it is 100% compulsory, it is of little value or use in my mind.

    • Dear Brad,

      The reason most Doctors don’t want to participate in the PCEHR is because:

      1. it is the equivalent to posting your private health information on the front page of the Sydney Morning Herald or facebook. Doctor’s will be sued for breach of confidentiality, not negligence.

      2. The patient needs to sigh a waiver (clause 7.3) which gives the government compete ownership, control and use of their personal health information (ie hour private information becomes the governments intellectual property, forever…..once signed you can’t change your mind.

      I suggest your look at this link to understand why the medical profession does not want to get involved

      http://www.privacy.org.au/Resources/AS-PCEHR-Clin.pdf

      • JS,

        1.) This patently isn’t true. The agreement a GP signs effectively says that what happens to the data is the responsibility of the GP *until* it is uploaded to the PCEHR. Obviously the Gov. isn’t going to indemnify private business against data breaches that are outside the control of the Gov.

        2.) The Gov. has most of the information available to it anyway. If you tie together MBS, PBS, Pathology requests you already know pretty much anything you could want to know about someones health.

        3.) If you truly believe that your personal health data is safer in a private small business than in a highly funded, highly controlled Gov eHealth record then I have a bridge to sell you :)

        In regards to the Privacy.org FAQ – there are legal issues in regards to many of the ‘concerns’ listed. For example, if the Gov doesn’t have the full IP rights to the data which is uploaded to the PCEHR there is the possibility of ongoing legal action around IP infringement when that content is reproduced.

        • Jimmah,

          the IT team involved in the development of the PCEHR itself has raised grave concerns about the privacy risks involved.

          the medical team of NHETA has resigned en masse due to massive concerns about how things are being done.

          Here is clause 7.3-this is signed by THE PATIENT,

          7.3 You grant us a perpetual, irrevocable, royalty-free and
          licence-fee free, worldwide, non-exclusive licence
          (including a right to sub-license) to use, reproduce, copy,
          modify, adapt, publish and communicate (including to
          other healthcare provider organisations and to
          organisations that store health information) material you
          have uploaded to the PCEHR system for the purposes of
          the PCEHR system.

          Personally I would be concerned that this could lead to abuse of peoples private health information. Once your information is on the system it can be accessed by anyone, anywhere with access to the portal. Sure it says that people will sign agreements to not inappropriately access files eg of celebraties, politicians etc etc but it is naive to think this won’t happen.

          Electronic Health Records have been trialled in other countries (eg UK) and have not worked, why bring a faulty system that has failed elsewhere here?

          • There are good legal reasons why those clauses are in the agreement. I agree they sound worrying and I would prefer that such an agreement wasn’t necessary but unfortunately the Gov. is going to mitigate risk as much as possible.

            The most important part is ‘…you have uploaded to the PCEHR system for the purposes of the PCEHR system.’ ie. The information that is uploaded by the GP/health provider is at the patients individual consent and can only be used for the purposes of the PCEHR.

            In regards to breaches of privacy – the PCEHR legislation has some of the largest personal penalties for breaches in AU. Added to that all access to an individuals PCEHR is fully audited and the individual can see exactly what has been looked at, when and there is a straight forward way to make a complaint.

            eHealth records have had varied success in other countries depending on the provider funding model, the rollout model and the design of the system. The UK system has been a huge failure but there have been significant successes in Europe & the US.

            We need a PCEHR because when fully functional it has the ability to reduce the overall costs of the health system by a significant margin and provide a better patient experience.

            Things like :

            * Reduction in medication related incidents
            * Reduction in service duplication (especially pathology testing)
            * More accurate treatment at ED presentation/after hours Locum etc (based on available histories)

            :)

          • Dear Jimmah,

            In an ideal world I agree the PCEHR has much to offer, in its current form it has many problems. As a health care provider an issue for me (apart from all the privacy and IP issues) is that patients can choose what will be uploaded, not the Dr, GP or otherwise.

            Hence the Emergency Dept, locum or any other health care provider will not be able to rely on the eHealth record as being complete and reliable. This increases the risk of adverse drug reactions (eg 50 + male with chest pain who has chosen not to disclose that they take viagra/cialis who is then given nitrates and suffers lethal hypotension), missed diagnoses etc etc etc

            Instead of making it compulsory for Drs to participate it is more important that people cannot exclude relevant information from their e Health record.

            it would be interesting to see if the uptake continued if the real pros and cons were presented to people in a Medicare office rather than a glossy brochure and a person with a clipboard encouraging them to sign up on the spot.

          • Hi js,

            There are some common misconceptions or misunderstandings there.

            Firstly, the GP is completely in control of what is uploaded as part of the Shared Health Summary. A GP is under no obligation to upload anything they think will compromise the patients health care. In your example the GP would simply refuse to upload if the patient wanted to hide the fact they were taking Viagra etc.

            The patient can hide things on their end once the GP has uploaded them but only in so far as entire health summaries can be hidden. The patient cannot modify, hide or delete any part of an upload created by a health professional.

            Totally agree with you about people not being able to hide critical information as the baseline! Would make things much simpler in the long run.

            Cheers

  4. “no public interest” about sums up the entire debacle.

    the public KNOWS our information will never be safe once the government has its grubby hands on it. Little by little any privacy we have been promised would be whittled away, until our records get dumped into the public domain by some “data breach” caused by lack of care, lack of funds, or just criminal negligence.

  5. The most “transparent” government of Australia evah, saying there’s a review we can’t see?? Say it ain’t so!!1

  6. Jimmah, Is having himself on, in my view.

    All the bullshit about improving patient care and reducing costs, wastage etc. is just spin. The PCEHR’s benefit to anyone hasn’t been proven, that it ever will do so is considered unlikely by most rational observers, and the hype is no more than what its advocates want to BELIEVE will be the outcome.

    Most aspects of medical treatment undergo rigorous testing before implementation, then are empirically evaluated ever afterwards, to result in ‘evidence based practice’. This is an approach that has sidelined many beliefs and ineffective treatments that ‘everyone knew’ were beneficial at one time.

    The PCEHR, and existing electronic clinical systems for that matter, are yet to be shown to improve clinical outcomes. Clever practitioners may gain efficiencies in their practice and business, but many users do not, in my experience.

    All the health IT evidence points to small projects being the most beneficial. The PCEHR is just another cumbersome leviathan, absorbed into the public bureaucracy, and that is reason enough to stay away.

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