Letter from Patricia Hewitt’s Department
The government’s apparent obsession with data – and data sharing, causes me some concern. Like you didn’t notice :devil:. Given the government’s level of competence with large IT projects, I have no faith that any personal information contained therein will be secure. With this in mind and with the NHS database looming large, I wrote to the Health Secretary and requested to opt out as promised by John Hutton.
Health Minister John Hutton has announced that patients concerned over the security of their personal medical history can opt to have it removed from the new national electronic database.
NHS patients worried that the information could be abused can restrict access to details by placing it in an electronic “sealed envelope” which will only be opened in cases of extreme emergency.
However, those omitting details of their medical history run the risk of clinical staff making mistakes through lack of important information.
The letter I received in reply said something very similar. Penned as if from the immortal Sir Humphrey Applebey, it took a page and a half to pretty much say what is in the above three paragraphs.
Unfortunately, it is not possible to give you such an acknowledgement at this time. It is the Government’s intention to help patients make an informed choice about their own level of participation in the NHS Care Record Service (CRS). The Government is looking very closely at the circumstances where it may be appropriate for patients to exercise this choice, in consultation with organisations representing the interests of patients, citizens and health professionals. A major campaign to inform patients of their rights is planned for later this year.
And…
They will be able to place particularly sensitive information in a ‘patient’s sealed envelope’ so that it can be made available only with their express permission. Only those staff who have a ‘legitimate relationship’ with the patient will be able to see a patient’s record, and then only the parts they need to see to do their job.
That sealed envelope again. It’s all a bit vague. Translated into plain English; they don’t know. I could be cruel and say that they haven’t a clue. That is, of course, the problem. This administration is so obsessed with data management that it stumbles ahead without proper scoping and planning. They appear to be unaware of what, exactly, they want to achieve. My relationship with my GP works well enough using a secure, discreet system in his surgery. Any GP seeing me at the surgery has access to my medical records should they need it for my medical care. On the occasions that they have referred me to a specialist at the hospital, the necessary information is passed to that specialist. Given that it ain’t broke, fixing it is, perhaps, not the best use of limited funds.
GP’s Concerns
My GP expressed similar concerns when he emailed me in response to a copy of the letter I sent to the DHS. Worryingly, he suggested that it may be possible that detailed information in future would not be maintained on the local surgery system. Now, that I find disturbing. It’s all very well telling us that only relevant people will have access:
However, please be assured that access to patient information will only be available to authorised NHS healthcare professionals who must be registered and authenticated users of the NHS CRS. They must have a legitimate relationship with the patient – that is, are directly involved with the delivery of their care and have a ‘need to know’ relevant to that role. It cannot stressed too highly that unrestricted or uncontrolled access to personal information is not an option.
But the only way of ensuring that kind of security is not to keep the data off-site in a shared database. No database is wholly secure. Given recent problems at the Department of Work and Pensions and the Inland Revenue, government databases appear to be the electronic equivalents of colander. :dry:
There is a hint of contradiction between the above paragraph and the final one in the letter that tries to use scare tactics, inferring that refusniks will be subject to a lower level of healthcare:
However, potentially serious consequences arise from patients ‘opting out’. For the patients themselves, since future care may have to be given (perhaps in a lifethreatening emergency) in the absence of knowledge of existing conditions, earlier treatments and medications; and for the NHS as a public service, such as increased costs in treating patients who have opted out, reduced ability to quality assure care and learn lessons about outcomes, and less robust healthcare statistics and financial flows. Inevitably, those who do make that choice may not receive the same quality of care as other patients.
I am not easily intimidated. Indeed, such veiled threats merely work to entrench my position. The stinger, though, is in the last couple of lines – they do intend to share the data beyond those directly responsible for primary healthcare. I would presume that it is anonymised for statistical purposes, but again, without absolute assurances, I will resist. I just don’t trust them.
The National Identity Register
We are told that there will be no link between this database and the NIR. This may be so. However, no incumbent government can make such a promise and guarantee that their successors will honour it. Far better to ensure that the mechanism does not exist in the first instance.