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?
Sounds rather like Kerr has a bad case of that old “the authorities would never be interested in you unless you’ve done something wrong” approach to the world. It’s a very effective bubble: must be nice to have such faith that the world will align with your best interests (extremely privileged to think so, of course).
Mary: spot on. And I keep thinking that here, at least when it comes to child removal, at least when it comes to people writing in more progressive publications, that issue would at least be acknowledged.
This was a bit of a wake-up call.
I was thinking about privilege with respect to police interactions only the other week when the police knocked at my door, looking for someone else who’d accidentally got hir address wrong when filling in a form just after moving nearby (we’ve been getting lots of hir mail, so we know this).
I was able to answer the door confident that I could explain this and be believed.
But what if I’d been someone who looked and sounded differently than I do? Someone who pressed all the police officer’s assumption buttons about believable citizens and suspicious citizens? What could have happened then due to the fact that another person who is of interest to the police made a mistake on a form?
How would Kerr’s proposal account for such errors? If my children got taken away within an hour of me being stopped by police who accessed an erroneous record and proceeded on that basis, what hoops would I have to jump through to prove this and get my children back?
I think there’s also an underlying, largely unexamined assumption behind the idea of a system like this, which is that the general population (aka “patients”) can’t be trusted to remember their own medical/social information and disclose it to the appropriate people as needed. We’re all too stupid/not doctors, so how would we know whether a broken leg six years ago is relevant to today’s sore throat? Clearly, we don’t know, so doctors need to be able to read all of our information and decide for us.
I once requested my medical records from a doctor with whom I had had an issue, and discovered – to my bemusement – that he had written down symptoms that I had never said I had – because I didn’t have them! He had just assumed, oh, she has x, she must have these symptoms and had noted them. Wtf?
It all fits into a larger picture where we don’t have the *authority* to be responsible for our own health.
Yes, seriously, why do police, in particular, need to know any of this? Even sharing between medical professionals should be closely monitored for privacy breaches. Limited and condition-specific programs like influenza notification to track the spread of a disease can be (and are) handled with current legislation.
I wonder how the idea of patient privacy applies – if medical professionals know that every detail they enter into the system can be accessed (without due process) by any number of people not involved in that patient’s care, should they be entering those details at all?
lilacsigil: A (relevant) aside: My understanding is that right now, as privacy legislation stands, people should under the law be able to access anonymous or pseudonymous care. However, fewer than 10% of GPs (in one survey) said that they would offer this on request. Anonymous care prevents invoicing or Medicare claiming, meaning that again, it can only be available for those who can afford it.
Rebekka: I’ve had that exact same experience with a doctor – a complete lie and fake past diagnosis in my file.
Lauredhel, and *that* wouldn’t be at all problematic in the case of all and sundry being able to access your medical records!
In my case the diagnosis was correct, just I wasn’t experiencing the symptoms he’d written down, and the treatment was… far from correct.
Of note is also the fact that it was a mental health diagnosis with the modifier “severe” attached. Just … made up.
Oh wow. Accuracy of current record keeping is obviously a huge issue, let alone compounding that with sharing them willy nilly. A friend told me how upon enrolling her son in high school, she was offered behavioural intervention programmes even though her son had never had any need for such. It turns out that one of the primary school teachers had written on the file that he has a disability. The basis for her “diagnosis” seems to have been that his brother has a disability and he himself used to call out the answers in class rather than put his hand up. Noone seemed to be bothered that this woman wrote down a diagnosis she had absolutely no authority to make.
I spent a portion of last year having “full and frank discussions” with a school counsellor who was exceptionally eager that my son receive a diagnosis for his delusions and hallucinations (he was playing with imaginary friends – something very common for kids with ASD who have been socially ostracized). I kept thinking how easy it would have been for someone less sure of themselves to have accepted her authority and then the poor kid would be lumbered with a totally fallacious mental health diagnosis.
Just thought of another scenario I should have included in the post – future custody proceedings.
This sort of idea is the sort of thing that keeps many sensible people well away from formal healthcare of any kind, unless they’re in absolute crisis and have no choice.
How about the idiot psychologist at the county mental health center back in California who wrote “substance abuse” on my file (I saw when she left the room for a short time to get something from the printer or somesuch) because I listed Vicodin as a medication? That would just go dandy as I try to maneuver life with a chronic pain condition. Mmhmm.
There’s a reason I wrote a letter, long though it may be, to add to my records after the wild shouter of a doctor verbally assaulted me about being addicted and ruining my life and soforth. Last thing I need is for THAT visit, and whatever the hell she wrote about it, to sit on my record uncontested. And that’s a record that is only shared with other providers when I specifically authorize it. I know the danger well enough, given how many problems I already have accessing treatment.
I’ve never understood the obsession with shared electronic medical records. I understand why electronic record systems are useful — my clinic uses them (in a run-down little building in the “bad” part of town, but everyone carrying those little laptops and electronic pulse readers and such) — but whatever efficiencies may be realized by making them universal still don’t stand up to the very serious privacy violations involved in automatically sharing them.
I can only imagine if the records from ALL the abusive doctors had been available to any doctor I saw.
I can only imagine how getting a “second opinion” would go if the doctor could see that you have seen six different doctors before hir about this same situation. (But you live in a ruralish area and the doctors have vastly outdated understanding of the condition, misdiagnose/mistreat you, make it worse, etc.)
I can only imagine what would happen if I were under treatment for a psychiatric condition at the same time as trying to get help for physical pain from a provider who has made it clear sie is prone to attribute that pain to “just depression” whenever it can be dismissed that way — but who is the only doctor available/practical to treat that condition, leaving you stuck with hir.
And so forth.
The people who can run right past all these scenarios are people who are lucky enough to be healthy and “normal” enough not to have been mistreated. The people who, even if they faced an odd case of mistreatment, would be able to shrug it off because there isn’t that power imbalance involved. They aren’t dependent on that precarious balance and aren’t going to face loss of income, employment, pension, insurance, etc. because of it. Lucky them.
“The people who, even if they faced an odd case of mistreatment, would be able to shrug it off because there isn’t that power imbalance involved. ”
I get that you’re saying that with a disability, there’s more of a power imbalance, but there is a power imbalance *inherent* in the doctor/patient relationship, because the authority is all on the doctor’s side. I’m lucky enough to be healthy and relatively “normal” (as you put it) but I’ve still had that power imbalance used against me, as I said above.
Rebekka: the power imbalance is there, but it is not so intense. When you depend on doctor’s reports for your income, or to retain custody of your children, when the disability you have is one stigmatised by police and public servants and employers, when you are seen as an inherently negligent or dangerous human being because of a diagnosis, it’s a whole different ball-game.
Having worked and lived on both sides of the Centrelink counter (I’ve been employed by Centrelink as counter staff and tech support staff, and I’m now on the dole for the second time in my life) I know full well that while the government does what it can to maintain privacy, it can’t do everything. Nobody can. We’re only human. Centrelink is well and truly doing their level best to avoid errors and privacy breaches. The notion of allowing full and frank access to my medical records to any and all persons who feel they have a need to know about them terrifies me as a result – particularly since I do have a mental illness.
Heck, here’s another hypothetical: my brother and I have the same first initial, and I’m still using my birth surname. So what happens if somewhere in the process of shuffling things, the whole business gets cross-linked? All of a sudden, people looking for my data see his, and people looking for his data see mine, which puts his job in danger because of my mental illness. Let’s leave out things like the fact it’s probably an inheritable one (both of our parents and three out of four of our grandparents were either diagnosed with it, or clearly displayed the symptoms) and what that means for his two daughters – neither of whom show any signs of being followed by the family curse at this stage. Just the fact that the two of us, with our different medical histories, could be confused (and oy, the trouble which would be involved in getting things sorted, because of course the system would be right, rather than either of us) makes me wary of the whole notion.
But heck, why not push this whole-heartedly in the direction this guy wants to know – let’s have all our information cross-linked across the various state and federal government agencies, and have our entire histories available for everyone to read whenever they want. Link your credit history in as well, not to mention your police record, your Centrelink history (which starts when your parents claim Family Payment for you… trust me, Centrelink has most of the country on their database), your billing records with the various utilities, your bank account details, your school reports, any military service, full work history, etc. Now try changing your address even once.
Jeebus.
As a schizophrenic sex worker, my view on the cops being able to obtain that information at any given time is a resounding and terrified DO NOT WANT.
First let me say that this kind of medical information scheme is six different kinds of ill-advised and I’m furiously in agreement with all other commenters.
It’s the justification the author’s tried out that is what irritates me on this one—it’s the use of “Child Protection!” to support the most bizarre and unrelated policy schemes. It’s going to get to the point where if a Council wants to raise parking levies or the Commonwealth wants to reform small business tax regulation they’ll start raising the prospect of All The Abused Children to do it. It’s sloppy, lazy, and insulting argument, and every time someone does it, the actual issue of child neglect and abuse is made more difficult to engage with in public.
To paraphrase Peter Pan; every time someone says they support more child removals for a wider range of reasons, a decent argument in favour of a limited role for the State in parenting loses its wings.
(Furthermore, if just being cared-for temporarily by a drunk parent were grounds for summary child removal, I don’t think I’d have a single friend or relative who’d been brought up outside permanent foster care).