- Smart Healthcare, Tuesday 24 March 2009 15.39 GMT
Full stop: a report says two English NHS systems probably break human rights laws. Photo: jiunlimited.com
Database State, a report published by the Joseph Rowntree Reform Trust and the Foundation for Information Policy Research, puts the two English NHS systems on its red list of government databases, along with the National DNA Database, the National Identity Register and ContactPoint.
The report used a traffic light system, with red denoting systems the authors feel are almost certainly illegal, under laws including the Human Rights Act and Data Protection Act.
The report says that the detailed records use a "wikipedia model of uncontrolled collective authorship," with many people able to add material but none responsible for the overall quality. It adds that the ability of social workers to see GP records has already discouraged low income single mothers from seeking treatment for post-natal depression.
The Department of Health denied the report's claim of illegality. "It is simply wrong to claim that the Summary Care Record and other aspects of the National Programme for IT are unlawful," said a spokesperson, adding that the report was "full of basic errors and below the standards usually expected for a Rowntree report".
"Neither patient consent nor confidentiality are being overridden," the spokesperson added. "The aim of the National Programme for IT is to provide information to doctors and nurses which will save lives and improve the quality of care. Central to it is patient consent and the right of patients to opt out."
The report also red-lists the Secondary Uses Service, through which patient data is made available for research and administrative purposes, primarily for lacking an opt-out.
"The report's comments on the Secondary Uses Service are also ill informed and inaccurate," said the Department of Health. "We recently consulted widely on this specifically to ensure that patient consent and confidentiality are protected and that the public is aware of uses that any data is put to."
Database State is also critical of the NHS Summary Care Record, which it places on its amber list of systems with significant problems. It says that Scotland, which has already completed a similar system, has already seen an abuse case in which a doctor accessed records belonging to celebrities – including, reportedly, the prime minister.
The report adds that the ability to view summary care records through the online HealthSpace service raises issues over coerced access.
Report co-author Professor Ross Anderson of Cambridge University said: "Britain's database state has become a financial, ethical and administrative disaster which is penalising some of the most vulnerable members of our society. It also wastes billions of pounds a year and often damages service delivery rather than improving it."
