(I’ve spoken to people working on the system, and trust me, it’s horrendously insecure).
They are having a consultation process on the use of your medical information, which you can take part in on-line.
NHS Connecting for Health (NHS CFH) is conducting a consultation with the public and healthcare professionals on the use of patient information for purposes such as health research and managing and planning care.
The health and well-being of the population can be improved by activities such as medical research, disease surveillance, screening, needs assessment and preventative activities.
NHS CFH is keen to obtain the views of the general public, patients and other interested parties on how patient information held by the NHS should be used for additional purposes such as research.
I suggest that everyone in the UK has a look at it.
From the Open Rights Group mailing list I’m part of, someone has made the following point.
Note that the survey more than once claims that patients have no legal right to control information they have given the NHS about themselves once it has been anonymised.
As a matter of law this is nonsense.
Information given in confidence may not be used or disclosed except for the purpose for which it was supplied unless the supplier consents, and this is not changed by removing the supplier’s name. So I hope responders will challenge this (and perhaps also the blithe claim that
anonymisation only fails in the case of people with very rare diseases, which greatly understates the risk that an aggregation of conditions,
dates and places will identify someone just as plainly as a name and address).
This is just exactly the sort of function creep that I mentioned in the previous post, please go and have your own say about your data being used in this fashion.
Oh, and you folks do me proud. If anyone else wants to join up (I do recommend it, I’m a proud supporter, and you can see the sorts of bright people we have involved) you can find out more here. These folks do good work that you can help support for less than the price of two pints of lager.