Medical ethics overtaken by technology
TheStar.com – Opinion/Commentary – Canadians have lost control over the intimate information they disclose to their doctors.
Feb 09 2014. By: Carol Goar, Star Columnist
You can protect all your PIN numbers, change your passwords regularly, safeguard your phone number and email address, use social media judiciously and erase your electronic footprint when you turn off your computer.
But there is one motherlode of private information you can’t control: your medical history.
The most intimate details of your life — psychological struggles, weight problems, addictions, sexual dysfunctions — are no longer subject to doctor-patient confidentiality. Tens of thousands of health-care workers now have access to your electronic health record. You can’t choose what to disclose or withhold. You can’t opt out of digital file sharing. (You might still be able to find a physician with paper files, but the number is dwindling rapidly.)
To complicate matters, many doctors have transferred their files to commercial data storage companies. If you want a copy of your medical record, you may have to pay a hefty fee.
Unquestionably, digitization has huge benefits. Instant access to an individual’s medical information can be critical in a life-or-death situation. The risk of adverse drug reactions is reduced. The latitude for medical teamwork is increased.
It makes remote robotic surgery and personalized telemedicine possible. It spares patients from remembering the names and exact dosages of their medications. It obviates the rigmarole of answering the same questions at every specialist’s office, diagnostic lab or clinic.
For most Ontarians, most of the time, the advantages outweigh the drawbacks.
But what happens when your physician retires, moves or sells his/her practice? What happens when your electronic health record contains inaccurate information (a misdiagnosis, for example)? What happens when it has gaps (an unrecorded drug allergy)? What happens when a medical practitioner somewhere along the way has made a value judgment (high-maintenance patient, chronic complainer, hypochondriac) that could affect your access to care?
So far, there haven’t been many complaints. But that’s largely because there is no one to complain to. The Ministry of Health, the College of Physicians and Surgeons and the privacy commissioner all signed off on the guidelinesunder which medical records are kept, shared, used and enforced. They all agree a slight loss of privacy is a small price to pay for better, faster, more advanced medical care.
What this means is that only an egregious violation of the rules — a patient’s mental health record is used by U.S. border security, a doctor’s advice triggers a sudden jump in a patient’s insurance premium, or a bundle of lab results ends up in a dumpster — will trigger a review.
Such incidents do happen, although they are rare. What is more common is that patients are left in the lurch when their long-time physician retires. They don’t know who owns their medical record. They don’t know how it is being used. They don’t realize private companies can charge them — hundreds of dollars in some cases — for information they voluntarily gave their doctor. And they don’t know where to turn for help.
Some call the Star. But journalists are stymied when none of the guardians of the health-care system is prepared to uphold the principle that a doctor must seek a patient’s consent before sharing his or her file. All they can do is challenge the consensus and ask the questions that no one else is articulating:
- Why do Canada’s privacy watchdogs, who exhort Internet users to be vigilant, say nothing about their most intimate information?
- Why do politicians react with shock and anger to the collection ofmetadata at airports but shrug off the involuntary handover of Canadians’ medical records?
- Why does Health Minister Deb Matthews claim Ontario is moving toward a “patient-centred” health model when patients have no say about how much information they want a multitude of doctors, bureaucrats and data storage employees to see?
- Why has the Canadian Medical Association backed away from the Health Information Privacy Code it adopted in the early days of electronic medical records, which prohibited doctors from passing on a patient’s health information without his or her consent?
The gatekeepers of medicare undoubtedly believe they are doing what’s best for patients. But patients deserve a second opinion.
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