What future is there for UK's Care.data info sharing scheme? The future of the controversial Care.data scheme will be dependent on the outcome of a much-scaled back pilot programme which started this autumn, meaning that at best it will arrive one year late, a report revealed Friday. Care.data is a mega IT programme intended to connect information on GP records with the Health and …
That if there had been a legislative guarantee that this data will not be sold on to third parties or made available to anyone other than public research institutions there would have been far less outcry.
But because they got data-greedy and wanted more than the basic goal of joined up records between GP's and hospitals it became a shambles.
If they had done it in stages there could have been an informed debate about each stage as and when it was proposed.
"... a legislative guarantee that this data will not be sold on to third parties ... "
The entire point was to make the data available to third parties, at a price. Drug companies and insurance companies were salivating at the prospect of getting their hands on the data. After that, it would have passed on to suppliers of incontinence pads, etc.
Quite amazing how few words its takes to express this, yet astonishing that it was apparently far too hard to anticipate the public response. The disaster here really amounts to an outside bet gone predictably wrong. The fact that the gamble was allowed to terminally damage the whole idea suggests it's run entirely by people so ideologically blinkered that they are exclusively concerned with the needs of '3rd party' research businesses, and not in the slightest with public good; essentially not fit for purpose.
This is going to continue again and again with all kinds of data grabs until those doing the grabbing get that, properly informed, the public do in general share the same red lines, but not the governments enthusiasm for their data as a freebie for the private sector.
the NHS had failed to properly consult on the privacy concerns of sharing data
doesn't begin to describe the problem. "Some twunk thought they could flog all our data to life insurers and other lowlife and we'd all be to stupid to notice and too apathetic to do anything if, by some mischance, we did smell a rat" is a bet closer to the truth.
I, for one, don't trust them even slightly and won't support any care.data revival until the management up to and including the Minister for Health have been sacked. They're all guilty of attempting to sell data they don't own.
"a legislative guarantee"
needs to be MAJOR jail time for ministers if there is a leak, only way that they will be bothered in keeping it safe.
I have opted out at my GP and had a letter put in my notes at the Hospital saying NO information even if anonymous is to be given to HSCIC, as hospitals have already been giving this data over for years. :-(
If this data was for clinical purposes people may see it differently but as no clinical practitioners will see this for your treatment and its just a database for sale.. I say FU*K OFF.
I, for one, don't trust them even slightly and won't support any care.data revival until the management up to and including the Minister for Health have been sacked. They're all guilty of attempting to sell data they don't own.
Like every other non-accidental breach of data security, care.data is intended to be "too big to fail". If so much data is released so widely that "nothing can be done" then the public will just shrug its collective shoulders and get on with life. The same has happened with the CCTV, ANPR, and the Facial Recognition surveillance schemes, let alone Internet usage and GCHQ.
The person who really needs to lose his job over this is Tim Kelsey ( http://uk.linkedin.com/pub/tim-kelsey/41/b05/49b ). He is the one who stands to make mega-bucks from this exercise. I will not use the NHS again until he is sacked for gross misconduct, and is serving time for data protection offences. The only reason that care.data is not an offence under the Data Protection Act is that Kelsey got exceptions for his pet project written into the Health & Social Care Act. By the way, this Act also envisages Social Workers having full unexpurgated access to your medical record, "to serve you better", of course!
Your problem is that your data IS going to be extracted (eventually), even if you opted-out, because that is what the system is intended for. Your opt-out just (theoretically) defines the end users of the data; some get it, others do not.
In the case of your summary care records, you have no say at all. They are only for use by "healthcare professionals" (mission-creep rules apply). http://systems.hscic.gov.uk/scr
Your care.data records are the ones being discussed. http://www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Pages/care-data.aspx
As always, what you start with is not what you end with. I would be extremely surprised if system resilience had not included considerable user resistance in the design phases, and then designed out the resistance. Care.Data will roll-out, eventually, with end dissemination decided by the design team and not by the data subject. Or maybe you thunk that the DPA exemption for HSCIC was for another reason?
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