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YOU almost have to be a hermit these days to avoid substantial amounts of your professional and personal information being available to all and sundry online.
It could make privacy concerns over personal electronic health records seem so 1990s. At least that would appear to be the conclusion reached by the nation’s leading consumer health advocates.
After years of worrying about the potential for Big Brother to poke his nose into people’s private affairs, consumer health advocates at a meeting in Canberra last week unanimously backed an “opt-out” model for the planned e-health national system, according to a report in the Sydney Morning Herald.
Rather than consumers having to deliberately choose to be part of the system of personally controlled health records, they would instead have to make an active choice to remove themselves from it.
It’s quite a shift from the view expressed by the Consumer Health Forum (CHF) in a 2007 submission on the proposed system when it warned opt-out mechanisms could be seen as “a short cut to get around informed consent”.
In that submission it said: “The opt-in process whereby a consumer chooses to participate by providing informed consent allows for the initiative to meet the principles of consumer participation — to be voluntary, free from coercion and based on full information.”
In May this year, in a submission on the operation of the e-health records, CHF said the system would be opt-in so consumers could elect to register and have an e-health record.
However, it is an opt-out system that offers the best chance of achieving the near-universal coverage that is needed if e-health records are going to deliver on the promise of safer and more efficient health care, so you might have expected the powers-that-be to welcome the consumer advocates’ about face.
So it seemed a bizarre role reversal when Health Minister Nicola Roxon defended the planned opt-in system, telling the Herald it was the best way to build confidence in the records.
With the system due to be launched in less than a year, you could almost imagine her muttering: “They’re changing their minds now?”
So what prompted the shift? The Consumer Health Forum told the Herald that advocates had become more convinced about the benefits of e-health for patient care and safety and in streamlining health services.
Perhaps more tellingly, one attendee explained her change of heart by saying: “You only have to look at Facebook”.
The rationale seems to be that if we’re all prepared to post drunken photos of ourselves on social networking sites (well … maybe not all of us), then we can’t really complain about sharing our medical records either.
There’s no doubt attitudes to privacy are changing in our increasingly networked world, but that doesn’t mean it should be open slather.
Transportable electronic health records are an important and long overdue initiative. They have the potential to bring enormous benefits to individual patients and their doctors and to the health system as a whole, but can we can afford to lose sight of the need to protect the information contained in them from misuse?
As Thomas Jefferson may or may not have said (it’s disputed), “the price of freedom is eternal vigilance” — even in the Facebook age.
Jane McCredie is a Sydney-based science and medicine writer.
Posted 5 September 2011
Having spent more than a decade working in the NT I can say that the rollout of e-health/Health Connect has been a resounding success from a continuity of care point of view. I can give many examples of how beneficial it has been in practice for those clients who tend to present to different providers and are often extremely poor historians. The benefits cannot be in dispute. Most of the population in the NT are Indigenous and had to opt in which I believe most did. My observations of that process, which involved speaking individually to each person and obtaining a signature was that it was a long and laborious process and logistically probably very expensive. In my current role as a chronic disease care coordinator the topic of e-health (or lack of)in Qld is raised frequently. By far the majority of people/clients I speak to think that e-health is way overdue and I could count on one finger the number of people who might possibly opt out. If people object to the idea strongly enough they will pursue the option to opt out vigorously.
I’m all for having an ‘opt-out’ system in the long run, but the question is how to navigate from where we are now to our desired destination. History suggests that without gaining widespread community confidence, any such electronic information system is doomed to failure (remember the still-birth of the ill-fated Australia Card). So I’m with Nicola on this one. Let’s start with an ‘opt-in’ system as the default, but put in place a plan to review community attitudes every 3-5 years. Once the community is confident that individual privacy is properly protected, then the system can be changed to a default ‘opt-out’ system.
As a health professional in the public health system for over 30 years there is no such thing as privacy when it comes to medical records including e-records.
I for one will be opting out for no othere reason than to prevent others prying into my very boring private life. I expect that politicians and high profile individuals [media personalities, actors, etc] will also opt out for the same reason [and for other reasons, H/O STDs , mental illness for example].
What about the mentally ill and others who cannot make a rational informed decision on the issue? Are they protected by the legislation?