Care.data's a good thing? Tell us WHY, thunders watchdog Patient concerns over the delayed NHS Care.data scheme must be addressed if the controversial plan to share GP records is to proceed, an independent watchdog has warned. The report by the Independent Information Governance Oversight Panel (IIGOP) said clarity on policy and communications is "absolutely essential" for gaining …
This has become such a mess, went to sign yet another opt-out form / letter at my surgery and the receptionist had no clue - had to explain everything to her, ended up leaving and writing my own letter explaining they have no right to ever share any of my data with anyone, unless they have my or my emergency contacts express permission.
is what he means.
So if they (or even we) share some of it, we must do so under some power, or for obvious benefit to him (as doctors have from time to time done in the last few millenia) and cannot say "you have allowed us to do whatever we like" in response to a question.
Paying would mean turning into Capitalist Lap Dogs though. Evil! The Worker's Paradise of Democracy will never support Imperialist Hegemony of antidemocratic CareData. The People will prevail following our Expert Hackers' Hacking the very timely structural failure of CareData.
Incidentally, has anyone else noticed that while most translations are, well, translations, North Korea's statements are transliteral - ie word for word; something that never sounds good.
Firstly, what exactly is it about this that makes you want to opt-out? Secondly, are you aware that the data collected from GPs will be using similar methods to the data collected from hospitals? If you've used a hospital in any form in the last 20 years then data about you is already being analysed.
"If you've used a hospital in any form in the last 20 years then data about you is already being analysed".
Which we were not informed about in a way that allowed us to make and give "informed consent" on the matter.!
Also dont say the information is anonymised as Big Pharma can re constitute the information and combine it with what they already hold to Identify individuals from this "anonymous data".
when i go in to a hospital now i present them a letter to put in my file that says ,
This letter is attached to my details when I registered at the hospital
I do not wish a SCR (summary care record) created.
I do not wish any of my details to be shared with the Health and Social Care Information Centre (HSCIC) even if anonymised and is deemed to contain no information that could identify me.
If the information was held within the NHS ONLY and for clinical care use and possibly research within the NHS on a consented basis and Ministers would be Jailed for extended periods of time if the data leaked then it would be different but its not for clinical care and is just a database for sale on the OPEN market.
Its my personal data and should be my choice as to what its used for - which would not include sale on the open market in any form. They'd get a good deal further if they ramped up the safeguards to include jail time for infringements, and offered an ironclad opt out for data being passed beyond the NHS and public research institutions.
To offer the data cut-price to the private sector so they can cherry-pick the most profitable conditions to treat isn't on at all. Public benefit spread as wide as possible please, not private profit.
>Its my personal data and should be my choice as to what its used for
Sort of...
This notion of your ownership of data about you is a fairly new concept. It has value, but it is far from being an inalienable right.
Imagine if the target of a journalistic investigation insisted that all data collected about him, belonged to him. Can't imagine journos fancying that.
You could equally argue that the investigations of (a team of) doctors belonged to them, not to the patient.
I'd say we need to balance value against danger - not set up absolute, impenetrable barriers (which will be pentrated, anyeay).
"You could equally argue that the investigations of (a team of) doctors belonged to them, not to the patient."
I'd agree the doctors may have some claims on some aspects of the data, in a sense as part of a 'portfolio' of their work. But given the personal nature of any data the patient has a particularly good argument for a larger share of the ownership, and at best the doctors part ownership should not allow them to veto the patients wishes in terms of distribution and research. A doctor using the data as part of their own ongoing training or their own professional research seems OK to me; passing it on for profit without the patients consent doesn't. And it shouldn't be up to ministers or doctors to ride roughshod over a patients wishes when it comes to 'greater good'.
What you end up with in that scenario (seems reasonable to me), is that everyone's agreement is required for wider distribution and everyone in effect has a veto. In practice the doctors rights should be passed to the NHS as a condition of employment.
The idea of the NHS as ultimate arbiter of value with final say over collection and use of data might be OK in some fantasy Britain, but not the one we live in. Most of the arguments have nothing to do with front line doctors but with people almost nobody trusts to represent anything but their own narrow interest; minister, civil servants, administrators, and worst of all, pharmaceutical and insurance companies.
HES - Hospital Episode Statistics - is data entered after the patient has left the hospital and Coded (in ICD-10) for payment purposes: GP data is entered (in Read Code or CTV3 - soon to be in SNOMED-CT) during consultation, for the purpose of direct patient care.
There is a difference - and it remains unclear how this will work - especially as every practice - possibly every individual making entries in the record - is free to make their own choice of Codes..
What exactly? I've opted out (twice) because I can't see how having a centralised copy of information will improve efficiency or accountability. Duplication does, however, seem likely to introduce errors; and the single massive store makes loss/theft of data a near certainty.
Any organisation (such as my local NHS Trust) which still uses Windows XP as its desktop platform is not able to hold data securely. I know there is a lot more to making data secure than a client operating system, but the OS is part of the picture and XP simply does not meet modern security standards.
Further, care.data seems to rely on nothing more than standard legislation to cover data protection. For an undertaking of this scale there should be specialised legislation that includes mandates and prohibitions on what can be done with the data, along with penal sanctions on individuals and organisations that violate the law.
I defiantly DONT trust the NHS or local GP's with data on computer.
NHS as a whole:
If stores cannot keep Credit card details secure with all the money they spend on their systems and the risks of unlimited liability for the cost of fraud committed on compromised cards. how can we trust the NHS which wont have the funds to keep the information secure to anywhere the same standards as stores and banks.
GP's
I purchased a Desktop PC from Ebay and as part of my putting it in to service i checked the HDD (using free non technical tools) and i found patient medical records and letters from GP to consultants about referrals for patients. if you live in the Blackpool area i may have your details......... my next PC purchase on Ebay came from a law firm in London (silicon roundabout area) and again client details and case particulars.
I opted out of SCRs because my local health authority had no controls whatsoever on who could access the data. They did plan to add controls once the system was complete, but until then they had none. It was no wonder so many people wanted to opt-out when this was brought up.
It seems to me that no public services can't be trusted with personal data. They have no real incentive to look after it.
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