Care for your medical information to fall into the public domain? Say details of a pregnancy termination, depression or your drug history?
In October, everyone who has not opted out gets a My Health Record. The government has attempted to put safeguards in place to protect privacy but with one important exception: access control.
Consider this: if any doctor can access a MyHR then whether or not you have ever been treated for depression, have taken RU-486, naltrexone, methadone, all will be in plain view.
This story written a few years ago by Dr James Freeman makes some excellent observations about medical privacy and how to fix the system.
Meanwhile the MyHR story is beginning to break in medical media.
Antony Scholefield writes in Medical Observer:
After a few months of quiet on the My Health Record front, the digital health agency put it firmly back on the agenda last week with two announcements.
The first was around the opt-out period when patients will be able to say ‘no thanks’ to being signed up to the scheme. The opt-out period will run from 16 July–15 October, and from year’s end, patients will be automatically ‘opted in’.
For practices and GPs, this means warning patients they need to make a decision about My Health Record within this period.
This news got me thinking. As someone with Crohn’s disease, who has written a lot about the health system, what will I do? Well, I can categorically say I won’t be opting out but this is mostly because, given that I manage to shoehorn that I have Crohn’s into almost every health conversation, I can hardly say I’m opting out due to privacy concerns.
But would I feel the same if I had depression? Or if I were female and had had a termination? I can’t answer those questions, but many patients will have to, so these dates become important. And if you are having a conversation about My Health Record and data privacy, then the second announcement concerning the framework for secondary use of data is also important.
The framework details the rules on who will be able to access de-identified data from records for public health research purposes. It stipulates that “for the public good” any organisation that is not an insurance company can apply to access the information. The Australian Institute for Health and Welfare and AHPRA already use a similar system.
This is a sensible move that comes on the back of the Federal Government’s disastrous 2016 attempt at publishing billions of bytes of supposedly de-identified MBS and PBS data online for anybody to use.
Editor’s note: This short story only seeks to address the issue of privacy. Is is accepted that the benefits to science and medicine from building the My Health Record statistical database will be enormous and very much in the public interest.