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Thomas Jefferson, third President of the United States and signatory to the Declaration of Independence (which was published on this day, 4 July, in 1776), said the price of liberty is eternal vigilance. Nowhere is vigilance more important than in the security and storage of personal information that we entrust to the State. It is a litmus test that strengthens or shatters our trust in its competence to be as vigilant of our interests as it is of its own.

We entrust sensitive stuff to others all the time. Banks, building societies and online bookstores — all have a piece of us, more than we realise.

That’s part of the price we pay to do things differently, more conveniently. We’ve seen some spectacular losses of data in recent times in the financial sector. Even the Data Protection Commissioner has been caught out. When the State loses sensitive personal data, however, the alarm bells ring louder. Why? Because many feel the State, in cajoling us to part with more detail, ostensibly to provide us with better services, really wants to know more than it needs and a lot more than we would like to tell. And we’re rightly reluctant to give it more than a modicum of extra control in our lives.

My records stolen

I recently got a letter from the Irish Blood Transfusion Service (IBTS) saying a record of my name, address, date of birth and donation record were on a laptop, which had been stolen from some unfortunate employee of the New York Blood Centre (NYBC) who had been mugged. Unfortunate, but it happens. Nobody from Transylvania has come calling since.

To be fair to the IBTS, at least it had the good sense to encrypt the data on the CD, while the NYBC had taken the precaution of encrypting the laptop after the data had been copied from the CD. Clearly something had been learned from the episode of the disappearing discs in Whitehall.

And the IBTS communicated the situation well, with the minimum of fuss. I was comforted with a reassurance that a 256-bit encryption key had been used to scramble the data on both the laptop and the CD, and also by the further reassurance that there was no known case of this level of security being cracked.

I’ve read since that it would take a password-guessing computer nearly 150,000 billion years to break the weaker, 128-bit encryption key, and so felt reassured that a 256-bit key could take at least twice as long to crack. Even Sellafield should be safe by then.

Blast of frigid gas

Everything looked rosy enough. Well it did, until I discovered that a few Princeton-based boffins, funded by the US Department of Homeland Security, have managed to break an encryption system by spraying high-tech computer chips with a blast of frigid gas from a decidedly low-tech aerosol can.

All of this raises questions about how secure our personal data, including sensitive health information, can ever be. And if that’s the case, does it really matter whether we entrust it to the Department of Health or to any one of the online repositories, such as Google Health?

The net point is that we could save a great deal of time and trouble — and a mint in these dire times — by having an electronic health record, which has all the data any clinician could need to ensure we get the right care.

In the US, the question has arisen as to whether the involvement of such an external health information service could undermine the nature of medical information as a privileged communication between doctor and patient.

Procedural safeguards

This is an issue which people here may also wish to consider before signing up. Their view will depend in part on how they weigh up the personal risks and benefits. It should also depend on robust legal and procedural safeguards.

The price we would pay for such a convenience is the risk that someone, somewhere, sometime could access the data against our wishes, no matter how secure the storage systems, no matter how strong the safeguards. The breach may be as foreseeable as an unfortunate public servant having a laptop in the wrong place at the wrong time, or as far-fetched as a squad of troops marching onto a privately-owned ‘server farm’ and mining our personal health data.

Knowledge is power

Either way, the basic need for an electronic health record for convenience and completeness, and a willingness to entrust it to others for safe keeping and for speedy access, is still sound in principle. A free society should give us the liberty of owning our health data, deciding who we wish to have access to it, and choosing whom to trust to keep it safe and secure. Thomas Jefferson urged eternal vigilance. The old Romanian proverb ‘cine are carte, are part’ — knowledge is power — is also apt.