Saturday, 6 June 2015

The NHS "Care.Data" Disgrace Continues: Up to 700 Thousand Patients' Requests to Opt Out Actively Ignored

Remember the Care.Data project in the UK, whereby NHS patients' medical records are supposed to be made available against a handsome fee – often not fully anonymised – to private business interests, which may many times clash with those of patients? If not, read the background story here, here, and here. There are a great many reasons why this project is faulty at its very roots (all explained in the above links), but one of the things that have been a basic rot the whole way is Care.Data's utter disregard for basic medical ethical principles, as for patient basic rights. The apparently deeply dysfunctional  Care.Data organisation Health and Social Care Information Centre (HSCIC) started out by trying to plainly ignore any claim to a right of patients to decline having their medical records sold to business interests or other third parties. When that didn't swing and the HSCIC was forced to supply patients with an opt out opportunity, they did their very, very best to cloak it from patient attention and impede access to what was in reality a simple straightforward exercise of filling out a form. It also surfaced that HSCIC in the meantime obviously didn't give a damn about patient consent and rights, as it was caught with its pants down having prematurely shared patient data with private insurance companies. Simultaneously, unsurprisingly, private pharma industry have been shown to enact heavy pressure, bordering on trying to incite bona fide corruption, on the HSCIC to provide "easy access" to Care.Data. This, apparently, was the last straw for governing bodies, and the Care.Data plan "was shelved" in March 2014. Later the same year the General Practioners' Committee (GPC) voted to demand a complete change to the Care.Data set-up, making it opt-in, in the meantime opting patients out of the scheme by default due to lack of trust in the HSCIC and Care-Data organisation, while  working actively to make patients aware of what Care.Data amounts to and their right to opt out of it, as well as into it. In August 2014 it was revealed that plans to relaunch the scheme have been forced to be abandoned due to the continuous problems to have Care.Data fit even basic standards of law and ethics.

Now, in today's Guardian, it reported (also here, here) that the HSCIC chair Kingsley Manning, in a letter to the House of Commons health select committee this February, has been pressed to admit to MP's that up to 700 000 patient requests to opt out of the Care.Data scheme were never logged, and thereby actively ignored by the Care.Data organisation, thus effecting sharing of their medical records with private business parties against these patients explicitly and lawfully expressed and legally protected wants before the shut down in March 2014.

The GPC lead on Care.Data issues Dr Beth McCarron-Nash is reported to to have characterised the Care.Data organisation: "basically it's a mess". Leader of data protection advocacy Phil Booth summed up the gist of the revelation neatly:

The material fact is, hundreds of thousands of people, last January, February, March, exercised their right to opt out of having their data passed on by the HSCIC, and that has not been respected.
 Meanwhile the HSCIC chair is reported to have ...

... told MPs that it “does not currently have the resources or processes to handle such a significant level of objection” and it also encountered technical issues over logging the preferences. /.../ [and] admitted it “may take some time” to resolve the issue.
As I said, the whole Care.Data setup is simply extremely badly thought up from the start, and its main organisation HSCIC is now admitted by its own head to be both dysfunctional and incompetent to carry out even the most elementary task to have the scheme meet even the most paramount of requirements for ever being fit for operation. In spite of this, it has went along and made Care.Data operative, thus violating hundreds of thousands of patients legal and ethical rights. If there ever were reasons to make the obvious decision to put the Care.Data freak out of its misery for good, it is now plain for all to see. Go back to the drawing-board with basic ethics and law at the forefront and do better. In the meantime, humbly (as I know UK law too bad to be specific), I suggest that leading Care.Data and HSCIC officials should be legally investigated and possibly charged with complicity in what has been revealed. For surely, it has to be in breach of some legal statute in the UK to just hand out people's medical records to third parties in spite of their legally submitted denial of the right to do so (?).