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Care.Data – why I am happy for my medical records to be shared for research

January 12, 2014

I’ve been hearing lots from people concerned about care.data, the new system to make NHS records more accessible for research.

I’m about to start working on a project which will use this sort of data (epidemiology of antibiotic-resistant bacteria – tracking ‘superbugs’ like MRSA, so we can make medicines for them work better).

I would like to explain why being able to access this type of data is so important for research that can have very big benefits for everyone. I am happy to answer questions, though I don’t know everything.

It has taken about nine months to negotiate access to most of the data we need, and my work will include things like physically going to GP surgeries around the Scottish Highlands, getting handwritten medical records out of a brown envelope, and transcribing the relevant bits, and then using individual details like people’s names and addresses to match this up with hospital records (I will have to do lots of going through filing cabinets in different hospitals), pharmacy records, and so on. This is very very difficult, time-consuming, and expensive. We have had to get approval from lots of different official organisations and people.

There are lots of security precautions which we have to take to use patient-identifiable data. For example, most people working on this project will not be able to see all of one patient’s record – I’m the only person who can do that under most circumstances.

If the new system was in place, I and my project would have much *less* access to patient-identifiable information. I would only be able to see specific bits of patient records, for example just antibiotic prescriptions instead of everything which the GP has scribbled down. I would be able to get records which were all already matched up for patients, so I would not have to work out whether one ‘Sarah Brown’ was the same as another ‘ST Brown’ who lives in the same postcode, and would not have to go through lots of records looking for clues.

Most importantly, care.data will only provide access to ‘potentially identifiable’ information. Unlike my current project, I would never have access to a patient’s name, or their full postcode. This sort of information is only identifiable to someone who is trying quite hard. For example, I have a relatively rare medical condition myself. There will be very few people living in my area who are women age 30 with my rare condition, so if someone was to break down the treatments used by area, age and condition, they could work out which of several medicines I take. But because care.data will only provide access to information as needed, that’s all they could find out, and the system would record and prevent any unauthorised access. They couldn’t do what I can do now, which is walk into a GP filing cabinet and read everything ever written about any patient in the practice, with a very low likelihood of ever getting found out.

I am much happier with the level of data security care.data will provide than with the current ad-hoc arrangements. They will be consistent, with good oversight, the information disclosed will only be what is needed instead of having to comb through a patient’s full record, and the research it enables will make us all safer and healthier.

I hope this makes sense, please ask me questions, I don’t promise to know all the answers.

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3 Comments
  1. Sam permalink

    Why can’t all data be anonymised in the first place, prior to being collected and put on the database?

    If that were the case I think everyone would be happy about it.

    • The data are pseudonymised. They take off things like your name and address.
      The problem is, it is difficult to make health care data completely unrecognisable. For example, if you know that I’m a 30 year old woman living in my particular postcode, you know that I take antipsychotic and antidepressant medication, and you know which month I had my contraceptive coil fitted, in theory you could search through the huge pile of records and there might only be one record who meets all those criteria. Then you could look at that record and find out other things about me, so the record would be de-anonymised.
      I actually think this is less likely to happen with care.data, because particular research projects would only have particular data – for example, my project might only get information about antibiotic prescriptions, so I wouldn’t be able to look up contraception or antidepressant prescriptions. Also the searches which people make could be tracked, so it would be obvious and traceable if I was trawling records trying to find a particular person, and I would get in deep deep trouble for it.
      But with care.data, I won’t ever see your name and address. The way things are now, I do.

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