Opting out

The deadline for opting out of the My Health Record is today.

My Health Record, for those lucky enough to have never heard of it, is a national electronic health record designed to ‘follow’ you wherever you go, to whatever health service or professional you access. 

MHR (we public servants are big on acronyms) is a long-running public policy clusterfuck.  One would think that a web-based health record would have obvious benefits, helping to reduce prescribing errors, drug interactions, and providing convenience for patients who are required to relay their entire medical history to every health professional they meet. 

And one would think that such a tool would be easy enough to develop.  But while the Australian government has managed to ensure that my employer is required to provide full details of every dollar that I earn to the Tax Office, the MHR is much more difficult. 

The MHR is what you might call a public policy clusterfuck, taking fully fifteen years to develop.  I can remember writing about it in 2006, when an early version was trialled in NSW.  At the time I was working in HIV, and people with HIV could be reasonably expected to have concerns about the security of their personal information. 

That was just one concern.  Added to this, there were the problems of technology.  When the MHR was first proposed, many medical services did not have reliable internet access.  And those that did used a bewildering variety of different systems, so the MHR had to be compatible with all of them.  Then there was the inevitable argy-bargy between the Commonwealth and the States, who all have different agendas and priorities – the main one being that someone else should pay for it.  Then there were the pesky consumers (that is, us) who had to be consulted and insisted on raising the tedious issue of ‘privacy’ over and over.

But finally it’s here.  And in order to make the whole venture financially viable – it’s not cost-effective to spend a fortune on a system that nobody uses - the Commonwealth decided to introduce the MHR on an ‘opt out’ basis, rather than ‘opt in’.  This means that by default, you’re in.  So if you’re too busy, or too preoccupied, or not literate enough to read the news, or use a computer, or you just don’t care, you will now have a My Health Record.  And the convenient part, in public policy terms, is that those categories account for most of us so we’re in.  And if you don’t like it, hey, we gave you an opportunity to opt out.

For the record: I opted out. 

I wouldn’t have, except that I caught a story about it on the radio yesterday as I was getting dressed for work.  The erstwhile Fran Kelly was interviewing one Steve Hambleton, Chair of the My Health Record Expansion Committee and former President of the AMA.  Always the challenging interviewer, Fran asked Dr Hambleton about some of the concerns expressed. 

Kelly crossed to Kerryn Phelps, the new Member for Wentworth (and another former President of the AMA), who was worried about the risk of inaccurate or incomplete information in the MHR.  Doctors might be liable for incorrect or incomplete data, she said. 

Don’t worry, Dr Hambleton assured: doctors are automatically insured. 

So doctors will be protected.  That’s important. 

The big advantage of My Health Record, Hambleton emphasised, is that it gives doctors accurate and current information.  It helps doctors.

‘But what about,’ Kelly pressed, ‘if a patient says – and I don’t know if this happens, but a patient says - “what about that anti-anxiety medication – I don’t want that put on my health record because I don’t want that getting out anywhere.”  And then another doctor three years on has no idea that this person is taking that medication and there’s a problem?’

‘That is absolutely true,’ Hambleton acknowledged.  ‘That absolutely does happen. That is true.  And people can say, “I don’t want you to share that one”’.

‘But isn’t that an in-built problem?’ Kelly asked.

‘It’s an in-built opportunity,’ Hambleton replied, ‘for patients to protect their privacy.  And it’s also an opportunity for me as the doctor to say, “look, you may not want me to write “depression” on your history but if I put the antidepressant in, the doctors will know…’

Know what? I wondered, as I did up my shoelaces.  What some little Sydney University fuck with six years of undergraduate medical science and one semester of training in mental health thinks they know about me and my life?

You see, what neither Hambleton, nor Kerryn Phelps, nor Fran Kelly, appeared to consider was: the possibility of discrimination within the health care system.  It was as if discrimination doesn’t exist.

Yet as any person with HIV, or gender issues, or mental illness knows, this is simply not true.  Discrimination is rampant, in every part of the health system.  This fact was brought home to me when I was gasping for air with severe bronchitis, and a young doctor asked quizzed me about my history of self-harm.

‘I really don’t think,” I gasped between coughing fits, “that my history of self-harm twenty-five  years ago caused the bronchial infection that I am presenting with today.  Please explain the basis for the causal relationship that you perceive.’

No matter.  Doctors can ask whatever they like and treat you however they like.   

And that’s why I do not consent to them having access to my health information.  I will decide who has access to my medical history, and the circumstance under which they have it.  Because I need to protect myself from their ignorance, ineptitude and discrimination. 

‘Aren’t you disappointed,’ Kelly asked, ‘That over a million Australians have opted out of the My Health Record?’

‘It’s about trust in the system,’ Hambleton replied.  ‘We have to build that trust’. 

No, I thought.  You have to earn my trust, because you have done nothing to suggest that you deserve it.  Once you’ve earned it, I will consider opting in.