'Consent' amounts to data rape
Dr Bernard Newgrosh, a GP in Bolton, has serious concerns about the confidentiality of the NHS care records and the presumed 'consent' of patients to having their data uploadedThe young man is very anxious. His solicitor has insisted all his notes are released otherwise there are consequences – his motor insurance claim will fail. But the young man's anxieties are justified. Although he has had no major illnesses, he did make one earlier, spectacular appearance at A&E.
The GP notes summary tactfully records the incident as 'rectal pain' but the practitioner who attended him in secondary care knew no such consideration. His letter gleefully describes the size, nature and purpose of the foreign body extracted from the patient. Since the young man did not suffer injuries to his nether regions in the traffic accident, this earlier incident is of no relevance to the claim. As the patient's advocate, his GP is able to reassure him. Although the solicitor demanded and obtained consent, it was not informed consent. What he obtained amounted to data rape. After informed consent this very personal and rather sensitive episode will not be included in the records sent to his solicitor.
It's in the post
It is 2007 and data is being collected for the NHS care records, the so-called spine. Patients are to receive letters informing them that their records are being loaded on to the spine. They are being opted in. Automatically. There are three levels of opt-out, but patients are warned that a complete opt-out has consequences. Isn't this like the solicitor's consent?
Not so fast. Let us look at the concept of receiving letters. The lucky ones receive letters – those that are reached by the Royal Mail and for whom the PCT has a current address. Given that at any one time about 10% of the list has not informed anybody of their change of address, that's going to exclude a lot of people. Excluded means deprived of their rights. Consider also that there is a time delay between a practice informing the PCT of a change of address and that change being registered on the system.And a letter written in English is not going to be understood by all who receive it. And that includes English speakers. How many are going to seek advice if they don't know what to do? How many are going to remember they had venereal warts 15 years ago or realise these were dutifully recorded in their notes? It's data rape.
Nothing to hide – ever?
Those who have nothing to hide can happily ignore their letter. Their notes will be opted into the system and they will forget about it. Then, one sunny day, something sensitive will be recorded in their notes. Will they then have the presence of mind to change their status? Will they then be allowed even a partial opt-out?Bear in mind that 250,000 people in this country will have access to these records. That's not just medical practitioners but also ancillary staff, clerical staff, social workers and the police. Private investigators, hackers and journalists are also bound to gain access by one means or another. Information has a price – especially anything that might be sensitive.Ah, but access to the sensitive parts of records will be restricted to medical staff only. Some guarantee that is. Since politicians approach everything with an open mouth, let us put their careers where their mouths are. Do the pilot study on them and their families. Load their personal data into the system and see how long it takes to leak out.