Here’s an irresistible puzzle for students of human nature: if someone opts in to the PCEHR, are they likely to risk compromising their health by removing a document their doctor has uploaded to it, without leaving a trace of its existence?
AMA president, Dr Steve Hambleton, thinks patients are quite likely to do so, and the fact that the PCEHR has a control which allows it, could compromise healthcare. “Having a control which allows patients to delete material and render undetectable the fact it was ever part of the record undermines the faith of the profession in the entire process,” he says.
NEHTA’s national clinical lead, Dr Mukesh Haikerwal, seems to have a similar view of the sheer contrariness of patients. He’s told the Medical Observer that his original understanding of the way the PCEHR would work was that patients could only remove specific documents in consultation with the doctor who created the record. Instead, the story says, “the system allows patients to ‘effectively remove’ documents without providing any clue to a practitioner who later accesses the record that the documents were ever there”.
On the other hand, Stephen Moo, CIO for the Northern Territory Department of Health, which has been running precisely this sort of record for five years, describes the AMA’s claim as “alarmist”.
“If you opt to be in this record, the advantage as a patient is to have as much information available as you can. The idea that consumers would just go into their record and start taking documents off … it just doesn’t happen.”
[It certainly wouldn’t happen with this particular PCEHR record keeper. As my post below indicates, I’m too busy adding stuff!]
Given my apparently obsessive behaviour, I’m possibly not the best judge of these things, but I tend to think that rather than signing up and going through the process of putting things into the record, then painstakingly removing them, your average, death-defying, privacy-obsessed patient is more likely to, you know, not opt in. I wonder if there is any research on just how deranged patients can get? I suspect that the one who recently upset Dr Hambleton is, on a scale of 1-10, possibly about 50: According to the AMA president, “I had a consumer stand up at a meeting the other day and say ‘I don’t care if I die, I’m not sharing my information with you’.”
Chris Pearce, another NEHTA clinical lead who has had a good deal to do with the design of the PCEHR – and is an acknowledged authority on the use of electronic health records – agrees with Moo. He says the risk is overstated, and furthermore, the privacy controls were needed to ensure patients signed up.
I think his point is a good one: “We’re now at the level where clinicians need to see the system in practice. That’s where a lot of these fears and uncertainties will be settled.”