I’m officially creeped right the fuck out by Trevor Kerr’s article in Croakey, “Why the secrecy about data, when it could help everything from influenza to child protection“.
I find any suggestion of national electronic medical records disturbing at the best of times, because the issue of abuse and data protection are overwhelmingly obvious.
Or so I thought.
Kerr argues against medical privacy protections, citing a hypothetical child protection case study which I think he intends to hold up as an exemplar of everything that good and right about a national electronic health & social record accessible to any public officer dealing with people:
Let me give an example. Suppose a young woman out driving gets tested at a roadside drug-bus. She tests positive for cannabis. The police check her data and find she is on a single mother pension with three children under six years, none of whom are with her. She claims there is a responsible adult minding the kids at her home while she is out for a short errand. The police have been able to access consolidated data on the family, and see they have been under watch by child protection in another State.
The officer in charge of the drug-bus detains the woman while they request a car to call at her home. The woman is told that uniformed officers will attempt to get someone to answer the door, and if there is no reply they will enter. They do knock, they hear only a child, so they go in to find an adult male in a back room of the house, intoxicated. If there were enough resources, that situation would require that social services remove the children immediately to a place of safety.
I guess every healthcare worker can envision situations where their work, and the general welfare of people, would be improved by good data.
So Kerr’s immediate go-to idea is to make it quicker and easier to remove children from their parents. What he omits to do is envision situations where unlimited sharing of medical data could go wrong – including the extremely disturbing nature of his own thought-experiment, in which the removal of children from parents is a wholesome national good, a consummation devoutly to be wished. Because Australia’s never got that wrong before.
Stop and think for just a moment.
You’re stopped by a local police officer on a routine traffic stop, and the cop accesses your history of gender confirmation surgery. Or the cop gets stroppy about the fact that you were prescribed narcotic analgesia after an operation last month. Or decides that that sleep study you have booked because you’re getting some restless leg symptoms means you must be a dangerous driver and removes the licence you need to work.
You present to a workplace immunisation programme where the nurse is your abusive husband’s friend. He accesses your record and finds out about that abortion you had last year.
You go to a pharmacy to buy painkillers for your migraine, and the pharmacy assistant discovers your record of having taking a paracetamol overdose when you were sixteen.
Your dad, a hospital medical administrator, knows all about your contraceptive pill prescriptions. He’s heavily into abstinence-only education, and he’s not happy.
You have a worker’s compensation claim for a neck and upper back injury sustained after a major breakdown in safety procedures caused heavy equipment to fall onto your head. The insurance company’s doctor discovers that you once asked a doctor about breast reduction surgery.
A pharmaceutical company buys data. You start receiving targeted postcard advertisements at your work address for the latest SSRI, or libido-enhancing drugs, or herpes antivirals.
The asshole locum doctor you went to just for an infected finger accesses your record of having been to rehab once, and gets antsy because you asked about possible interactions between alcohol and your antibiotics, and you’re breastfeeding.
You’re a crane operator. The company doctor uncovers the liver function tests that came up abnormal in the last lot of monitoring you had for your hepatitis B. She decides you must be an alcoholic, and you’re demoted to a lower-paying position.
You’re a teacher in a private boys’ school. The school nurse finds out that you have HIV. Things do not go well in the next staff shakeup.
You’re a midwife. The registration board reads your mental health diagnosis, and decides, without further inquiry, that you must therefore be unfit for duty.
You’re a receptionist in a doctor’s surgery. Your boss gets nosy and pokes around your record. You have CFS. You mysteriously find yourself out of work next week, because the doctor is worried about absenteeism and thinks that all people with CFS are secretly nuts.
You’re an Aboriginal parent whose life isn’t 100% a Leave It To Beaver sitcom, and every single interaction you have with a public officer means that you could be dobbed into child protection and have your children yanked.
Yes, I can’t think of any way in which the breakdown of medical privacy protections can go wrong; could you?