Free Our Data: the blog

A Guardian Technology campaign for free public access to data about the UK and its citizens

Who owns patient records? The patient, the GP, the health service or its contractors?

(Apologies for the delay in posting this; I’ve been moving house – on which more in another post.)

The Guardian looks at the vexed question of Who owns patient records? Vexed, because it’s not clear quite who owns the information (and hence access to the information) on those records. Rather as with banks, it looks as though while health organisations agree that you own the data about you, they’re going to charge you to access it, because it’s on their “property”.

In the days when records were on paper… a rule of thumb was that the secretary of state for health owns the paper; the GP the ink; and the patient the information. In the computer era, he says, the picture can be confused by ownership of equipment.

Dr Richard Fitton, a GP who routinely allows patients to see their electronic records, says the government should state outright that patients own their data. “If you pay me through taxes to produce a record I think that philosophically these records belong to you. If you want me to publish them on the web, or give you a complete copy, that’s fine.” Fitton dismisses as rubbish the idea that patients should be spared clinical details. “If you’re dying of cancer, you want to see everything.”

The piece has already drawn some letters, parts of which I’ll reproduce here:

The concept of who ‘owns’ electronic records isn’t a useful one. It’s more useful to consider who has a legitimate right to have access to them. Health data are created when the system providing care interacts with the recipient of that care – and both then have rights with respect to the data.

If I get my car serviced by a garage then both I and the garage need to have access to the record of the event. How would the garage owners be expected to react if I told them I wasn’t going to let them use the record on their computer?

If you are going to use the NHS you need to accept that it has to use your information to run the system (with appropriate systems to ensure the maximum privacy obtainable of course). To pretend otherwise is ingenuous.
Dr Rod Muir, Consultant in Public Health, Information Services Division (ISD), NHS National Services Scotland, Edinburgh

And another:

I think your article is wrong, at least semantically. Under the “access to medical records act”, GP’s can charge a maximum fee of £50 for a *copy* of a patient’s medical records. I don’t think GP’s can charge a fee a patient to read their records. They can charge a fee for interpretation of medical information.

What patients don’t realize is that when ticking a box for consent for access to their medical records when making an accident injuries claim for example, they are allowing their “agent” to have a copy of their *whole* medical records, not just the events around the accident. I have had to contact a number of patients to clarify this matter with them and most are quite shocked that *everything* is usually asked for. I have had to check with patients regarding child protection issues, sexually transmitted diseases, etc which are of course unrelated to road traffic accidents.
Dr David J Plews, GP Medical Adviser Rotherham PCT

Thanks to both for their input. There’s also been some blog action in response; see these Technorati links for blogs which mention the piece.

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