Why the secrecy about data, when it could help everything from influenza to child protection

The Department of Health and Ageing has called for submissions on proposals for developing healthcare identifiers and related privacy legislation. A Croakey reader, Dr Trevor Kerr is worried that the submissions are not going to be made publicly available.

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