Below he gives two pertinent case studies of the potential benefits that could flow from healthcare identifiers – in tracking potential adverse effects from influenza vaccination, and in improving child protection. He writes:

“It’s very good news that the government will pay to have an extra two million Australians vaccinated against the seasonal influenza. Let’s overlook the matter that these vulnerable groups could have been offered free annual injections well before this.

We do need to concentrate our attention on provisions for the future. There are two issues, crucial to the planning of vaccination for influenza, about which we know almost nothing.

One is whether or not the current vaccine for seasonal influenza affords any protection against the new H1N1 variant.

The first question, then, is resolved by looking at the data. But, where is that data and who is responsible for collating it into evidence of effectiveness?

The second issue is vital for success of any plan to vaccinate the whole population against the new variant. The World Health Organisation has stated, very clearly, that any program of immunisation against the new variant must be followed with rigorous surveillance in order to identify any harmful outcomes of vaccination. That’s because it is highly likely that entirely new methods of vaccine production will be used and citizens will be exposed to synthetic, novel molecules.

If the new variant remains in its present state and runs through the population without any greater morbidity and mortality than any other variety of influenza, the community will have plenty of time to be involved in proposed plans. However, in the event of increased deaths of healthy young people, buttons will be pushed to accelerate a program of mass vaccination. In that scenario of heightened concern, it may be suggested that arguments for the usual, cautious process will be out- weighed and that short-cuts should be taken.

Now is the time to address the matter of post-marketing surveillance of new vaccines.

Who pays for it, who collects the data, who owns the data and will it be scrutinised by methods accessible to the public?

These questions apply to surveillance after any event that may effect the future healthof individuals. Post-event surveillance may be of great value to both commercial operations and to planning for improved public health. The usefulness of data for either scenario depends on the usual factors – accuracy and timeliness.

Considerations of accuracy can be split, for simplicity, into those applied to the events and those applicable to persons. From my removed perspective, data on events are accommodated within hierarchical coding systems. Data on persons, however, need to be understood and sanctioned by citizens who have little knowledge of archetypes.

I find it odd, then, that the next phase of understanding and planning for a national identification system for persons – Department of Health and Ageing’s consideration of Healthcare identifiers and privacy legislative proposals  – will accept submissions but “submissions will not be made publicly available but will be shared with relevant government agencies to inform jurisdictional consideration of national privacy arrangements”.

That exclusion does not do much to encourage people or groups to add to the discussion.

Another oddity is that, in general waffle about healthcare identifiers, a notion has been allowed to travel when it is patently untrue. The idea has been promoted, without any attempt at qualification or detail, that the Medicare Number is a de facto identifier. Well, it is, of course, but by default only.

The Medicare Number, as it stands, has been explicitly excluded as a unique identifier. Medicare is proposing a 16-digit identifier, as we understand from DoHA.

There’s a similarity, in that people may be asked to accept the IHI as just a longer version of the existing ten-digit number. If they’d specified a 16-character string (alphas and numerals) maybe we’d feel more confident.

I’d like to think there can be common agreement at COAG that every step on the way to a national electronic health & social record, in which a national identification scheme is the first essential, would assist child protection services.

Let me give an example. Suppose a young woman out driving gets tested at a roadside drug-bus. She tests positive for cannabis. The police check her data and find she is on a single mother pension with three children under six years, none of whom are with her. She claims there is a responsible adult minding the kids at her home while she is out for a short errand. The police have been able to access consolidated data on the family, and see they have been under watch by child protection in another State.

The officer in charge of the drug-bus detains the woman while they request a car to call at her home. The woman is told that uniformed officers will attempt to get someone to answer the door, and if there is no reply they will enter. They do knock, they hear only a child, so they go in to find an adult male in a back room of the house, intoxicated. If there were enough resources, that situation would require that social services remove the children immediately to a place of safety.

I guess every healthcare worker can envision situations where their work, and the general welfare of people, would be improved by good data. To that end, the more we can provide input to this current discussion about health identifiers, the better will be the outcomes.

I suggest we ought, collectively, send the cops round to DoHA and demand an audience, so this matter can be discussed out in the open.”

• Trevor Kerr is a retired medical microbiologist, now working part-time for a community health service

“Much of the debate following the release of the National Health & Hospital Reform Commission’s (NHHRC) report A Healthier Future For All Australians will inevitably, and rightly, focus on issues of health care governance, funding and models of service delivery.  Some of the Commission’s most far-reaching recommendations could, however, be those relating to e-health.

The Commission is to be commended for providing one of the clearest, most powerful and potentially most effective statements of how to move the national e-health agenda forward.  Its key recommendation is that every Australian should be offered the opportunity to have a person-controlled electronic health record (PEHR) – a comprehensive electronic repository of health-related information generated by, and accessible to, themselves and their health care providers.

There’s not much new in that idea.  The concept of electronic health records has been around for a very long time; but the Commission’s approach has two distinctive, new features.

First, it suggests quite categorically, that Governments should play no part in “designing, buying or operating IT systems” to support PEHR.  That’s a job which, according to the Commission, can safely be left to the private sector.  Governments, in turn, should focus on the essential tasks of defining standards for those PEHR systems and regulating their use.  State and Territory Governments will also need to continue developing ‘in-house’ patient administration, communication and other IT applications to enable their public hospitals to interface with PEHR systems.

Second, the Commission proposes a series of deadlines for public and private sector health care providers to become e-enabled and able to write to, and read from, individual patients’ PEHR.

To reinforce the point, the Commission goes on to recommend that Government funding in the form of Medicare subsidies or direct payment for public hospital services should be withdrawn from any provider who fails to meet the relevant deadline.

The notion of a future Commonwealth Government withholding Medicare subsidies from non-compliant GPs and specialists might be viewed as “courageous” by the standards of Yes Minister’s Sir Humphrey Appleby but, if it is seen to be serious, it has greater potential to accelerate the development and uptake of e-health than any of the pilots, strategies or other initiatives that have gone before.  It is also entirely consistent with the view that, if e-health really is essential to ensure the safety and quality of contemporary health care, then there will come a time when Medicare should not subsidise unsafe, un-e-enabled services.

Private sector PEHR operators will want to be paid, but it will be in Governments’ and patients’ interests for those opertaors to compete on price and quality grounds to attract market share.

Beyond its recommendation that Governments shouldn’t directly buy PEHR systems, the Commission is less clear on how it sees the future funding of e-health.  One possibility might be for the Commonwealth to give every Australian an annual or biennial entitlement to a Medicare-like payment which could be used to buy a subscription to any registered PEHR service.

The level of such a payment would need to cover the full cost of subscribing to a robust, basic PEHR service so that no-one was excluded.  If they wished, individuals, employers or private health insurance funds might then choose to ‘top-up’ the Government subsidy to access more sophisticated PEHR which offered additional, value-adding functions.

Another important question concerns the costs that private sector health care providers might face in acquiring systems and revising their business processes in order to become e-enabled (and, eventually, to remain Medicare-eligible).  There will no doubt be an expectation that the Commonwealth Government should offer grants or subsidies to help meet those costs.  That could be expensive especially if, as the Commission has suggested, we see more professionals becoming Medicare eligible over the next few years.

On the other hand, it may be argued that such costs are (like receptionists, telephones and examination couches) merely one of the costs of doing business as a health professional in the 21st century and should be built into providers’ professional fees.  Indeed, if e-health makes providers more efficient then the cost may, in fact, be negative.  There is clearly more work to be done to develop an appropriate policy response in this area.

The NHHRC has made the way forward for e-health much clearer.  The challenge for Governments now is to follow through with the standards, regulations and financial arrangements that will enable the Commission’s clear and bold vision for a market-based system of PEHR to become a reality.”

• Professor Davies is a former senior Federal health bureaucrat

“I wish to draw attention to the recent NHHRC release entitled, ‘Person-controlled Electronic Health Records’, where on page 14 the following is stated:

‘ … We took the view that people would choose to hold and access their personal electronic health records in a variety of ways, including mobile
devices such as smart phones and secure storage media, and that a market would also develop for provision of secure on-line backup and storage services for people’s electronic health records. A person-controlled approach to electronic health records, along with a distributed repository, helps avoid the risk noted by the Australian Privacy Foundation that: “… a centralised database … requires only a single point of failure to facilitate data breaches and the growing problem of identity fraud.”

25 Companies such as Google, Global Health, and Microsoft are already exploring different approaches to the online storage of
personal health information through services such as Google Health, Hothealth.

The above represents a contradiction. If one provider and one platform presents a single security risk, then multiple commercial providers and multiple platforms present multiple security risks, and hence; the case as presented does not validate delegating the development and operation of Personal Electronic Health Records (PEHRs) to private (commercial) interests and providers.

The NHHRC recognizes the dysfunctional nature of ‘data silos’, yet proposes a ‘data silo’ by recommending PEHRs be developed and operated in isolation, by private providers, and completely separate from our core health system data, which is ‘perceived to be more important’.

If the patient’s experience is being perceived as less important, why?

Why has the potential gain from patient’s contributing to their own core health records been discounted and devalued?

This release provides evidence that the NHHRC attributes zero value to what patients could be contributing to their own core health records, to national health system improvements and learnings, and to the country’s collective research efforts.

Further … commercial providers will expect financial returns on dollars invested in PEHRs.

Commercial enterprises are not charities, and do not provide free public services. They will not be spending money without expectation of a return
on their investments, of getting their money back, in multiples.

How would a commercial provider based in the USA, make money from the personal health records of all Australians? What does the NHHRC think they plan to get out of it?

Could they, as one example, on-sell our collective de-identified health data to health insurers and life insurers; for analysis of patient profiles – to deem who is insurable and who is not – to deem what they’ll pay out on, and what they will not? Could they use the resulting database of Australian members to advertise and sell products produced by other countries, such as drugs?

The NHHRC is recommending patients become nothing more than market research data, and market ‘cash cows’ for commercial providers.

Indeed, sooner or later, everyone who wants to gain access to the proposed ‘commercialised’ PEHRs will be seen as a cash cow and will have to pay for the service – one way or another – even the govt itself, after it finally acknowledges the contained value in patient records, and wants access to the data it gave away.

The term ‘person-controlled’ is a red herring that should not distract from this opposing proposition.

Whilst the release infers patient-centricity; there is a clear contradiction in the recommendation that personal patient experiences and records should be isolated from our core health system.

Whilst offering plenty for commercial interests, this release offers nothing in the public interest.

The NHHRC’s ‘throw it out to the market’ release devalues patients and their experiences, and refuses to acknowledge the value patients could be
contributing to core health system knowledge and learnings.

It divests responsibility, and sentences the patient to a continuation of the status quo – which is more of the same commercial and personal
‘conflict of interest’ that already detrimentally impacts on patient health outcomes, our health system, and our economy.

At best this is a side-way move, and at worst, regression.

In this release, the NHHRC has wiped it’s hands of patients – and patients should in response, wipe their hands of the NHHRC.

• Cris Kerr is the author of  ‘Those Who Suffer Much, Know Much’ which formed part of Case Health’s submission to the NHHRC in 2008.