Four years ago the government – always to be trusted in its ambitions and aims – gave the green light to a programme which would see the NHS get a computerised system which would connect the 30,000 or so GPs practicing in the country to the 300 or so hospitals.
To allow this to work properly, it meant, or so the government said, that the medical records of 50 million patients would have to be linked to a single database. Patients were to be neither consulted nor given the opportunity to object to having their records used in this way.
“…A patient will not be entitled to refuse to make personal data available to the Spine. Data about all patient events may be routinely communicated to the Spine without consent of the patient” said specifications given to the contractors in 2003.
At the very core of the government’s argument about this project should go a head in this way is to be found in a speech given by Tony Blair as far back as 1998: “If I live in Bradford and fall ill in Birmingham, I want the doctor treating me to have access to the information he needs”
It’s a sound enough argument, and one with which few would in principle disagree.
However, there are a number of people who think that are issues of privacy involved, and that having that amount of information about people available on a single data base leaves those people’s rights to privacy in shreds and leaves them vulnerable to all sorts of abuses.
There is a group of healthcare professionals, prominent among them Dr Paul Thornton, a GP in Kingsbury, Warwickshire, which believes that a national database is not essential.
On the 9th of January this year E-Health Insider reported that Dr Thornton, whose special interest is patient privacy and confidentiality law, had called “for a judicial review of the government’s consent plans for the NHS Care Records Service (NCRS)” and that he’d “prepared a nine-page document setting out why he believes the government’s proposals for the NCRS are unlawful and pose what he describes as “grave and imminent risks” to both civil liberties and public health” Dr Thornton’s comments and document make worrying enough reading to make at least on patient think twice about whether or not records should at this stage automatically gravitate to thecentralised database. ________________________________________________________ PSRoss Anderson, professor of security at Cambridge, believes that patients do have legal rights over their records. In Wednesday November the 1st edition of The Guardian he advised:
“ Write and insist you are not put on the NHS spine….If enough people boycott having centralised NHS records, with a bit of luck the service will be abandoned”
The Guardian advised:
If you are concerned, you should discuss it with your GP. You can put a block on your own data by writing to: The Secretary of State for Health
Richmond House 79
London SW1A 2SN.
And send the same letter to your GP. It should say:
Dear Sir/ Madam
I require you not to begin processing my sensitive personal data to theproposed NHS Summary Care Record on the Spine. It is likely to cause me substantial unwarranted distress because:
1 No’sealed envelopes’yet exist to limit access
2 No online patient system yet exists to correct errors
3 Data uploaded may include genetic, psychological or sexual information
4 It is intended to make my data available to social workers, researchersand commercial firms
5 My consent will not be asked before beginning processing
6 Adequate criminal penalties against abuse do not yet exist
7 Police and other agencies can gain access to a potentially unlimited rangeof information about me. There is abundant evidence that computerdatabases – including police, vehicle licensing and banking computers –are routinely penetrated by private investigators on behalf of clients,including media organisations
8 250,000 smart cards have been issued granting access to the Spine
9 The department threatens to withhold appropriate medical care to objectors 10 Doctors say there is no necessity to design the Spine in this way
For these reasons, among others, I strongly fear that I am in danger of having false or damaging health information fall into the wrong hands. My privacy is being unnecessarily violated.