Patient records: Now you see it. Now you don’t.

by Charles Wright on July 24, 2012

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.”

{ 1 comment }

anon July 24, 2012 at 10:10 pm

Agree completely that we’ll shortly be able to see real patient behaviour.

The privacy lobby asked for a lot of functions that clinicians don’t like. Similarly, they also asked for things they weren’t given – and there were things that some clinical groups asked for that other clinicians didn’t like.

Take for example mental health records. A set of mental health professionals reached a point where they said they’d have to recommend that their patients not participate, at risk of being stigmatised. The resulting compromise was the limited access document function – a patient can declare some documents to have restricted access, and they can declare any documents uploaded by certain providers (for example, their mental health professional) to be restricted.

Result is that this person has a normal appearing record to most clinicians, but those clinicians with full access can also see their mental health records. A clinician who declares an emergency can see those documents – but it’s not clear what would trigger a clinician to declare an emergency – why would they think to do so when they appear to already have access?

The key point is that without this feature, those records wouldn’t be in the system at all – many (most?) patients with a mental illness would choose not to have those records loaded.

Similarly, there are a bunch of reasons to remove documents. They can be removed by a clinician if they decide it’s incorrect, they can be removed by a clinician or patient if they decide it’s not their record and for whatever reason has been incorrectly loaded. They can be removed by a consumer if they hadn’t wanted that loaded – but it accidentally was. Consider here the teenage girl who has an abortion, but whose parent or a friend of the family is a clinician. Maybe she lives in a small town and procured the abortion somewhere out of town. Now imagine (unlikely I know) that the clinician forgets to ask, and uploads to her record. Most GPs wouldn’t do this, but for arguments sake they had an administrative failing in their practice. And that teenage girl doesn’t have immediate access to the clinician to remove it – but is worried her parents will find out. So that teenage girl cannot remove the record that she originally hadn’t wanted loaded? Personal control does have to mean something.

Likely volumes – low. Importance in giving reassurance to those who might get into a situation where they really need that function – very high.

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