Abortions, sex changes, genetic defects

I offer you two thoughts from two different sites.

First – 21st century data in the UK: “A patient will not be entitled to refuse to make their personal data available to the [NHS] Spine [data systems]. Data about all patient events may be routinely communicated to the Spine without the consent of the patient. … The citizen has no legal right to stipulate what will and will not be recorded … nor where those records will be held.”

And secondly – 20th century data in Germany: “Only after Jews were identified — a massive and complex task that Hitler wanted done immediately — could they be targeted for efficient asset confiscation, ghettoization, deportation, enslaved labor, and, ultimately, annihilation. It was a cross-tabulation and organizational challenge so monumental, it called for a computer. Of course, in the 1930s no computer existed. But … punch card technology did exist. … [and] Hitler was able to automate his persecution of the Jews … from the identification of the Jews in censuses, registrations, and ancestral tracing programs to the running of railroads and organizing of concentration camp slave labor.”

The problem of course is not with data, per se. NHS staff are a pretty benign bunch. The problem comes when people with strong convictions have relatively friction-free access to data, and it is compounded when data becomes more enduring.

In this world of increasing fundamentalism, I am not comfortable that the health service can record abortions, gender re-assignments, genetic abnormalities, and other politically, socially or financially sensitive information, that they can record it in ways that mean that the data is pervasive and enduring, and that they can record it against our will.

7 responses to “Abortions, sex changes, genetic defects

  1. The problem isn’t really that the NHS keeps info like this whether you like it or not, the problem is that in this country anyone who really wanted to could find out that information _whether or not_ the NHS kept it. It’s just… handier… to go through the NHS.

  2. I’m stuck. The benifit to having the information would be huge – people are areadly surprised when they come of the hospital, and we don’t know the information about their operation at another hospital last week. After all when they go to a branch of their bank in Halifax it knows about the withdrawal they made in London.

    When I admit someone to hospital I have to rely on the patient to tell me which drug their GP prescribed, most patients aren’t really sure, and don’t know the names. ‘There’s a blue one, a pink one, and one of my blood pressure’. Most people, when they come to hopsital bring a list of their medications with them, but if they’re hit by a car, fall in the street they don’t often have it on them. So I have to ring the GP, fair enough,but not if it’s 10pm and the GPs closed.

    In this situation you do several things, Wait until the next day, which is fine unless this happens on a the Friday of a Bank holiday weekend, ask them to get some relatives to go and pick up their medication, or if it’s the sortof medication they can’t do without you make proffessional judgement as to which medication it’s most likely to be.

    People do come to harm because medical data isn’t transfered from one hospital to another:also it would make research so much easier. Instead of working with samples we could work with the actual population data: and that would be incredable. We could plan services better, we could know that we have X amount of patients with diabetes, and x amount of patients high blood pressure, so we need X amount of doctors specialisting in diabetes, and X amount of Nurse Specialists.

    The benifit is definate and the risk is possible.

  3. I ws reasonably surprised to find that my paper notes held at various GPs around the country have been consolidated and computerised at some point, or most had anyway. The only ones that don’t seem to be there are from a family planning clinic I attended for a few years (basically because it was open on a saturday, unlike any GP surgeries).

    I wonder if they were scanned in (or typed up) by a previous practice or whether this has to be done every time I change GP? How would they get to the next GP or are they all already centralised?

    In any case, it is the thought that doctor-patient confidentiality isn’t any such thing any more that is worrying. At the very best it is patient-all health service personnel confidentiality, but really once it is in that database your information could actually be accessed by all sorts of people.

    Did EDS or Crapita have anything to do with this?

  4. You used to have paper notes which were physically sent from one practice to another, a few months after you changed doctors. When practices went compterised each Practice would buy it’s own computer system – still about 4 machines and either sit down with all the notes themselves and summerise them, or pay medical students to do it.

    Now when you change doctors the doctor has to print off the paper, send it to the PCT and they send it to the new doctor. It takes about 2 months!

  5. Ah, thought it wouldn’t be anything as sensible and seamless as whacking it on a disk…

    I find it quite reassuring in a way, that they aren’t very portable yet. That will disppear when they all end up in the centralised DB though.

  6. No, because different practices have different computer systems: so one file can’t be read by another. Technically it could be saved as a .rtf files, but it doesn’t seem to be done at all but none of the practice managers I’ve met have managed to work that out.

    There was a fuss in the BMA news this week about Doctors objecting to an ‘Opt out’ system instead of an Opt in one: as they saw that as a breach of confidentialy.

    Medical confidentially does exist and GPs are apparently threatening to refuse to release the information to the central system. Already they’re refusing to use ‘choose and book’ the other big IT initiative. Doctors do have a proffession duty to keep information given to them confidential to the organisation and see that it is used properly. Working for the goverment does not excuse that duty.

    Mystic Z can’t get exicited about the whole thing and says:

    ‘This will be a big expensive disaster and get cancelled by whoever wins the next election. ‘

  7. Mystic Aphra agrees, but mainly because all the NHS’s IT systems are big expensive disasters.

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s