Today on a mailing list I frequent someone accused the Australian Government’s MyHR (“MyHealthRecord”) system of being designed for the bureaucrats, not to further patients’ interests. Another person responded, saying that it was wrong to accuse people of deliberately designing the system that way. Strangely enough I agree with both of them – but the former more than the latter.
The design of large systems often isn’t deliberate, even if those involved fondly imagine it to be so. It is often no more deliberate than the system that “designs” a butterfly, a camel or a sea-slug. It is a design without designer, arising from the pressures of the environment that gives birth to it.
Speaking and writing about things as if they had a designer is known as “the intentional stance”, and is used extensively in discussions of things like evolution. It’s just easier to say “designed to”, “wants to” “tries to” etc, as if there were intelligent striving behind the process, even though everyone involved knows full well that the process is blind – a ratchet driven by survival.
So it is with large projects like MyHR. Individuals and organisations have their purposes and their desires, and the sum of all those is what drives the “design”. Since most of the desires in the process are NOT about patient health, you get a system that is mostly not about patient health (and most emphatically and definitely not about patient privacy).
If it walks like a duck, quacks like a duck and looks like a duck, then Ockham’s Razor tells us that it most probably is a duck.
Given the look of this particular duck, the disadvantages to patients – especially via the almost absolute loss of control over their own data – are likely to vastly outweigh any benefits.
Given the additional fact that about two billion dollars have thus far been spent on a system that no-one uses and most likely will never use, two billion dollars that could for example have been spent on more hospitals, clinics, doctors, nurses, health education and so forth, you could say with some accuracy that the system is a long way behind the eight ball as regards patient benefits.
Whatever its multifarious architects may have wanted or intended – no doubt in many cases sincerely and even altruistically – the fact is that the MyHR “design” that has arisen has very little to do with patient health.
So I for one will continue to say that MyHR has been designed to benefit the health bureaucracy. Any benefits patients may see will be side-effects and largely unintentional.
There is no dichotomy between privacy and effective health care – in general. But there is such a dichotomy between privacy and MyHR.
The person who can destroy a thing controls it. Until patients have absolute control over the contents of their stored health records the “My” in “MyHR” is a sham.