Why we all need Edward Snowden: In this post, I describe how my family’s information was used inappropriately by healthcare professionals in Canada. I look at this in the context of Edward Snowden’s revelations and other intrusive data mining. This is a longread at 2,500 words.
In a recent op-ed in The New York Times, Thomas Friedman commented on the NSA’s PRISM program:
That is why I’ll reluctantly, very reluctantly, trade off the government using data mining to look for suspicious patterns in phone numbers called and e-mail addresses — and then have to go to a judge to get a warrant to actually look at the content under guidelines set by Congress — to prevent a day where, out of fear, we give government a license to look at anyone, any e-mail, any phone call, anywhere, anytime.
Friedman’s comments represent one side of a polarized debate: the revelation of NSA information-gathering has triggered arguments about the rights of individuals, Americans and others, versus the rights of the U.S. government when it comes to protecting its citizens. Despite outcries from privacy advocates, the PRISM program now seems precociously standard when it comes to Homeland Security.
While the U.K. is known as a CCTV state, the U.S. has skipped that cruder technology and like China is now surveilling from within. Dissenters question how deeply the government needs to penetrate their lives because, unlike Friedman, they don’t believe authorities will get warrants to look at gathered material. It appears they’re right: If Edward Snowden is proof of anything, it’s that there are few if any controls.
The implications of Friedman’s words are obvious. Normal citizens living blameless lives have nothing to worry about. Suspicious patterns are what interest the American government, not screaming matches between divorcing spouses. However, if one parses Friedman’s words, it’s not hard to see the weakness of his argument. When he says he will “reluctantly, very reluctantly” trade off his privacy for security, his words suggest Americans actually have a choice. He also seems confident that private information won’t fall into the hands of others, outside the U.S. government, who wish to exploit it. He categorically ignores the reality of income inequality and the threat it poses to his government’s autonomy. The truth is that the concentration of wealth has created a global and de facto oligarchy, one where those with money, influence and powerful computers can bypass judges and warrants to mine and manipulate whatever data they want. Simply put: the very rich, as a group, have more power than most governments.
Seinfeld, Elaine and New York Doctors
A few years ago, an episode of Seinfeld covered a topic that was funny but substantive in its own way. Elaine, Seinfeld’s female foil, was having a doctor problem. She’d with quibbled with one and earned herself a bad reputation. When other doctors turned her away, she attempted, with her trademark insensitivity, to find out what they were saying. The script handled the conflict deftly: the real comedy lay in the neurosis of all navel-gazing New Yorkers. When it came to over-reacting, Elaine and her doctors were caught in a tie for last.
I remember watching the episode and wondering if a situation like it could happen in Canada, a country where doctors are tightly networked by government-run healthcare. At the time it was a theoretical proposition only; I’d never upset a doctor badly enough to find out. That changed in 2008 when my mother had a stroke in an Ontario hospital.
In brief, my mother’s stroke went undiagnosed and untreated despite my best efforts. The window of opportunity, when its effects could have been mitigated, came and went when nurses rebuffed my concerns, concerns repeated to them over the course of several hours. My contention that my mother’s consciousness had altered was dismissed because she was on morphine for a gangrenous toe. I was told it was the drug’s effects I was witnessing and that an alert to the hospitalist on duty was not in order. The stroke eventually took hold and she was left profoundly paralyzed on her left side.
Other calamities followed and the nadir of that experience occurred when I discovered my mother’s surgeon had falsified a report. After her gangrenous foot had been amputated, we were told a week would be needed before doctors could determine if the gangrene had been successfully treated. Our fear was that it would return to the site of her amputation.
It was a tense few days, as anyone who has ever waited for results can appreciate. When we were told to wait for her surgeon – who was slated to give us his verdict – we stationed ourselves in her hospital room. Three hours passed and nothing. Through the doorway we saw him making his rounds, but he didn’t attend my mother. Eventually I went to the nurses’ station and was told he’d left for the day. However, I was also told he’d completed my mother’s examination and she’d been given the all clear. To prove it, I was presented with her chart and shown his written entry. It was surprising because neither myself nor my mother’s partner had left the room between 4 and 7 PM; nonetheless, the surgeon reported he had examined my mother at 6 PM. When I asked the nurses how this could be, what followed was an interrogation worthy of Law and Order. Did we leave to use the restroom? No. Are you sure? Yes. Both of you? Yes. Did you leave to use the phone? No. Are you sure? Yes. Did you fall asleep? No. Are you sure? Yes.
So when I saw the surgeon the next day, and then overheard him joke about me, I let rip with a choice expletive. Little did I know that that outburst would cause me a world of grief, months later and in another province.
DNA and Electronic Medical Records
Back in the 1990s, when advances in genetics were changing landscapes in healthcare and policing, initiatives were also underway to transfer medical information from paper to electronic records. In 2010, the Ontario provincial government commissioned the following 30-second PSA.
As with many recent technologies, the proposed introduction of e-records raised concerns over the security of the information stored in them. The fear was that the private sector, and in particular the insurance industry, could use this information to discriminate on the basis of indicative pre-conditions and genetic guesses. While concern was greater in the U.S., which depends upon private insurers and HMOs to fund and provide care, there were concerns in Canada too. Information about one’s health could be used to discriminate in many ways: jobs, credit and even one’s marriage prospects could be affected.
The pursuit of happiness, considered a birthright in countries like Canada and the U.S., stood to be undermined by easy access to individuals’ medical histories. EMR (Electronic Medical Records) brought forth a host of ethical issues similar to euthanasia debates, currently ongoing in many countries, over the rights individuals have when it comes to managing that other personal resource, namely their lives. That debate offers a useful and informative comparison: the onslaught of the “grey tsunami” on government-funded healthcare systems is driving much global apprehension. Many countries, Canada included, are facing economic hardship because of healthcare expenses associated with ageing populations. So in this charged economic atmosphere, with all its fears and uncertainties, the over-valuing of those resources which can produce value (the employed) and the devaluing of those which cannot (the retired) is not so surprising. These days market forces are a bit like seismic shocks — their vibrations are being felt everywhere.
A Bad Outcome
After I swore at the surgeon, my mother and I had an extraordinary streak of bad luck when it came to managing her care. I brought her to Montréal to live with me until I could place her in a nursing home. She needed round the clock support and had to be monitored closely because of her blood pressure, which fluctuated dangerously. I cashed in her investments to pay for a live-in caregiver and, set about, immediately upon her arrival, finding specialists who could help me manage. Even with a sabbatical, it was gruelling work.
So imagine my surprise when we started being refused by doctors. In the first few months it happened three times; in two of those instances, the refusals were delivered outside of normal channels. That is, we were refused after initial appointments and in ways that did not follow protocol. It was only after the third refusal that, like Elaine, I started to wonder and worry.
The mystery wasn’t solved until a clerk, who had seen my mother and was clearly moved by our difficulties, called me back after yet another postponed appointment. He admitted he thought the specialist he worked for was avoiding us and then suggested my reputation may have been sullied by something written in my mother’s medical records. He also implied that phone calls had been made and received that to him seemed related to us. After hearing this, I found the offending paperwork and started approaching clinics with it in hand. I gave it to doctors straightaway, told them what they would find and then added that they could hear my side of the story if they were interested. It was a bold move, but also enough to change our luck.
I’m telling this story because I was unprepared for the fallout from my conflict with the surgeon. It meant that instead of having access to a devoted elder-care clinic and their gerontologist, we were forced to use our local emergency room. ER wait times at hospitals in Montreal can be anywhere from 8 to 12 hours. Obviously, this created hardships for my mother.
Do we need Edward Snowden?
While it’s no fun to live in a state of constant vigilance and suspicion, putting blind trust in our authorities isn’t wise either. After the difficulties I had with the Ontario and Québec healthcare systems, I started this website. Although I suspected malfeasance, beyond tepid evidence provided by that one clerk — that a document had occasioned phone calls and possibly refusals — I could not prove anything substantive. In the end, the problem was left for me to deduce, after myriad disappointments and a lot of wasted time. Like many people in my position, I was also reluctant to share my suspicions with friends, lest I appear unreasonable and paranoid. My sense of isolation, already acute at times, only grew.
And so imagine this: you apply for a mortgage, but are given excuses or offered unsustainable interest rates. You apply for health, home or car insurance and similar things happen. You aren’t being denied that mortgage or insurance, but for reasons unclear to you, your rates are higher and less amenable than rates offered to your brother or your neighbour or your friends. This mist of ill-fortune follows you around, and because you are unable to locate its source, your complaints and suspicions turn inward and affect your relationships with the people supporting you. After trying and failing, they withdraw. If they are close supporters, they may move out, divorce you and take your children. If they are less close, they may stop returning your calls, perhaps distance themselves in public. You slide out of the middle class and into a set of circumstances your background and education did not prepare you for. And why is this happening? Somewhere along the line, some information, possibly pertaining to your health or your earning potential or your credit management, has been crunched in a way that is unfavourable to you. Perhaps you made a comment online, offending someone with the power to affect your life, someone you don’t even know.
MOOCs and data mining
Recently, I have spent a lot of time writing about MOOCs (massive open online courses). My concern is that in their closed and for-profit incarnations they are an inferior form of education delivery, especially when it comes to the less advantaged students they seem destined for. I also fear that data mined from them can be used in the ways I’ve just described.
Daphne Koller, in her TED talk about MOOCs, explained how data gathered by weekly online assignments revealed how students completed their work. A graph showed that most logged on at the last minute to do assignments, without much online engagement earlier in the weekly interval. That information tells us, she says laughingly, that students like to procrastinate. Well, yes. It also tells us that Coursera is observing this phenomenon and that they likely have the names of students doing it. My question is, would banks and other lending organizations be able to purchase that information? And would Coursera inform their students?
In the early 1990s, I took part in the development of my province’s English exit test. The test goes like this: students are given three texts of about 2000 words each. They must choose one and write an analysis of 750 words. Their analysis is then graded on various elements measured at various levels of competency. Within categories of content, organization and mechanics, for example, are further subcategories which are measured too. Initially the Québec government stated the test would be pass-fail only and had been instituted, primarily, to make sure CEGEP professors were doing their jobs.
Almost 20 years on, the test has gone from pass-fail to a letter grade. That grade is now part of each student’s final transcript and is used by universities to decide admissions. In the event of a very tight race, universities can request even more finely-tuned data. The test evolved into this latest and more complex version because university admissions boards said they needed more variables to make accurate and subtle calculations when it came to admitting students. That may be true, but as most of us working in education know, that pattern of evolution is common. A reform is presented as beneficial for students, then morphs into something that’s beneficial for administrators. The locus of power shifts, in other words, away from students and towards those making decisions about them.
We need to keep this pattern in mind when people like Daphne Koller are up on the TED stage giggling about students and procrastination. Twenty years down the road, and with data-mining the norm, her observations might not be so funny. And that’s also why we need the blogosphere, critics and people like Edward Snowden. His actions make it easier for the rest of us to tell the truth too.
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