There has been a lot of talk about the coming of electronic health records and most of us just switch off at the mention of it. We are used to our doctors keeping records about our health with lots of personal information.

Who cares if they put it on a computer, as long as that computer is only accessed by the doctor you gave your information to, or someone you gave permission to access, and as long as you are able to consent to this information being collected and stored in the first place?

But the launch of an e-health record system, where a file of personal and medical details will be kept for every single person on a central database, accessible by doctors, hospitals and other health care providers, raises some very real concerns about privacy and what, if any, control we have over who collects and who sees this very private information.

There is a real danger that the benefit you get from having vital information -“ blood type, allergies, current medications etc. -“ readily available to treating doctors across different locations may be lost because of the potential for your privacy to be breached.

The value of this system will only be realised if there are adequate safeguards to restrict access and ensure its secure storage. As well as having some control over who can access the information, you should also have a right to decide whether you want to be part of the program at all.

Under a system currently being trialled in NSW, you have no say about whether an electronic record is created for you -“ the government has already made that decision and will create an e-health record whether you want one or not.

You can opt out of the system, as opposed to the model we prefer, known as the opt in system, where you are given the opportunity to decide whether you want a health record created and electronically stored.

The trial of a shared electronic health record started last week, and another will start in May. The March trial is for elderly people (over 65) in the Hunter and the May trial is for children (under 15) in Greater Western Sydney.

The purpose of the trials is to test the system before it is rolled out to all NSW and then it will be linked into other states in one national system.

It is important to note that we are not opposed to electronic records per se, nor is anyone proposing that we don’t trial new technology in the area. But we are placing on the record some real concerns with the current proposal.

Each record will contain non-health information. It will include your name, address, home phone number, health information. It may include a health diary, a summary of treatments, dental records, results from blood tests, discharge referrals. That’s if you don’t opt out of the trial.

But even if you do opt out of the system, some personal information will still be collected. That’s even if you opt out from day one. You will still be in a database containing demographic information because the department needs to know who opted out so it doesn’t keep collecting clinical data about them every time they visit a participating provider.

And patients who opt out more than 30 days after their first visit to a participating health service provider will still have their health information kept by the department -“ it won’t be deleted.

We think there is potential for misuse which must be eliminated before the system is introduced. Imagine you are a young gay male, diagnosed with HIV, and living in a small country town. Would you feel comfortable with the local GP or the local pharmacist or the local nurse having access to your records without your consent?

It is the job of people designing electronic health records to minimise these risks as much as possible -“ by using the best technology, legal safeguards, policies, procedures, and training. And of course they are trying. But the task is proving very difficult and the trials are going ahead anyway.

We advocate an opt in model, as in other states, where you participate only if you consent, and understand fully how the system will work. You also should be able to exercise control over your records -“ who will see it and which parts. And you should have confidence that the IT systems, policies and procedures in place will minimise the chance of unauthorised access.

If you are interested in what may happen with personal and health information, come to our forum at the YWCA on Liverpool Street on Thursday 6 April at 6:30pm. Guest speakers will include representatives of ACON, the Council for Civil Liberties, the Australian Privacy Foundation, the Council of Social Service of New South Wales (NCOSS), and Privacy NSW.

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