A tale of two hospitals' data

Hospitals vary hugely in whether they share data with patients – or with their own departments, says the Patient from Hell

A favourite argument among politicians and IT-pundits right now is about the question of "who owns my data?" This is a largely Tory reaction against Labour's perceived penchant for creating monster 'Big Brother' databases, like the identity register and the health service's Spine. They think it would be cosy for all citizens to "own" their own data. I almost agree, up to a point.

I am a patient of two hospitals. One is the specialist 'Fastrack Hospital', which sends me copies of all the pathology readings, discharge summaries and outpatient reports that they send to my GP. The other, a general hospital, keeps me in the dark.

The contrast between my feelings about the two hospitals is stark. At Fastrack, I really believe the rhetoric about "patient and the clinicians are all part of the team" – even though I sometimes have doubts about the treatments some of the "team" are handing out.

At the general hospital, I feel that the doctors are holding something back, just because I am not copied in. I am being most unfair, because their treatment is excellent – and, more importantly, they laugh at my jokes.

My suspicions may date from an operation I had there 17 years ago. It was most successful, but gave me, without any warning, a life-changing side effect. (As this is a family column, I will not spell out what the side-effect was.) I have never trusted them wholly ever since. I remain frustrated and resentful that they do not give me the chance to check out that record of mine.

Conversely, I enjoy seeing my Fastrack record. It gives me a feeling of being somehow in control. In theory, I would like to go further, and question some of the details, which are plainly wrong and misleading. But I have not so far plucked up enough courage to do so.

So I am still quite far from truly "owning" my record. In fact, I don't think I want to own it. That would imply having to manage it, which I, and most other patients, would be quite incapable of doing.

Another nice thing about my Fastrack record is that it is not just in the hands of the doctors. I found when I was an inpatient that physiotherapists, people in the lymphodoema clinic and pharmacists had access to it.

This is not the case in the other, general, hospital. How the doctors in that hospital can pretend that all these services are part of the team, but not allow them access to my vital statistics, is beyond me. Actually, I do understand it. It is 19th century medical snobbery. That's what it is.

So, all I ask is that my record is all in one place, and is accessible to me and ALL those who are treating me. Not much to ask, surely, but we still seem to be miles away.

To comment on this article, email sh@kable.co.uk

• ICO chastises NHS over data losses

  NHS organisations were responsible for 30% of the security breaches reported to the Information Commissioner's Office over the last two years

• Blackpool to go paperless in 2012

  An acute trust in the north-west plans a complete shift to electronic patient records in three years as part of its new contract with Alert

• Computing problems lengthen Barts' waiting list

  Cerner user Barts and The London NHS Trust has said its attempts to meet the government's 18 week waiting list target have been 'compromised' by IT weaknesses

Close