There has been some interest in an article on this IT Projects blog about Elizabeth Dove who went to her GP about suspected depression and found her medical records being shared with a local council in the Isle of Wight.
It transpires that it’s routine for GPs to refer patients to primary care trusts that share some online health records with local councils. It’s done in the interest of patients. But Dove hadn’t expected her health records to be looked at by council staff.
Several of those who contacted me about the article were broadcast journalists who were surprised there had been no public debate over the sharing of some health records with council staff.
Now a former employee at Isle of Wight Social Services has contacted the IT Projects blog to say that she trained on the Swift system in question – which links the council and primary care trust – and was offered the use of live data.
“I worked for Isle of Wight Social Services a few years ago and part of my induction included training on this system [Swift – which is used to share primary care trust data on patients with councils]. I thought it awful that information was shared in this way and so casually – the training session used real live data – and agree completely with the previous blogger [blog comment] that notes on such a database should have very restricted access.
“I also think the information should only go on such a database with the informed consent of a patient which has clearly not happened here. I refused to use the system but do know that assumptions were made about people based on this data. What happened to doctor/patient confidentiality? And why no debate on this?”
When a patient goes to see a GP for treatment of suspected depression they don’t expect that their neighbour, who may work for the council, will know their medical history.
The sharing of medical records between councils and primary care trusts is done for the right reasons. PCTs and council social services share some responsibilities in mental health, including the treatment of depression. But there has been no public debate about some council staff being able to see NHS medical records. It has happened by stealth.
Lawyers and senior civil servants have even quietly written into law clauses which sideline the Data Protection Act from data sharing between councils and the NHS. It’s likely this was done with the acquiescence of busy, transient ministers who probably have little or no knowledge or understanding of the subject.
The Informaticopia blog has drawn attention to a report in July 2008, the Data Sharing Review by Richard Thomas, the Information Commissioner, and Mark Walport, the director of the Wellcome Trust, which concluded that there was a “fog of confusion about circumstances in which personal data may be shared”. One of the report’s recommendations was that all organisations which share information on citizens should be “as transparent and open as possible about how and with whom data are shared, with what authority, for what purposes and with what protections and safeguards”.
In the meantime it appears that council staff are viewing electronic medical records with little or no statutory control. Hence live NHS records are used for training by council staff.
No government likes controls on its affairs. The pressure for controls comes from elected representatives – there aren’t elections for PCTs – and from the media which is usually kept in ignorance because councils and the boards of PCTs take decisions of importance in secret.
Often it’s only when things go wrong that we learn what decisions have been taken. That’s one reason Computer Weekly and the IT Projects blog campaign for more openness and honesty in the NHS and government – and local government – decision-making.
After years of campaigning for more transparency in the public have we made a real difference? Absolutely not.
Anger as councils share confidential medical files with councils – Computer Weekly, September 2008
Patient dismay as medical data is shared with local council – IT Projects blog, September 2008
Medical records shared with Isle of Wight council – Ventnor blog
Data sharing report of the Information Commissioner and Wellcome Trust – Ministry of Justice website
UK government moves forward with data sharing – Programmable web
Are you ready for data sharing? – April 2008