In principle, the idea of personal medical records of National Health Service patients being kept on a central computerised system is a good one. Although the days of brown envelopes stuffed with decades of a patient’s medical history filling the filing cabinets in GP surgeries have long gone, people’s clinical records are still usually confined to the organisation which collected them – either electronic GP records held in the practice or hospital records in a paper folder with: “Property of the hospital, not to be removed in any circumstances” written across the front.
Currently, information can only be shared by letter, email, fax or phone. This can be slow and time-consuming and frequently things got lost. All too often, vital notes are not with the correct patient at the correct time in the correct clinic.
This inability of patient information to move seamlessly can cause problems. Hospital doctors and out-of-hours GPs who do not know the whole picture may make false assumptions. People can get the wrong treatment with serious consequences. If it were all on a computer that could be accessed on a need-to-know basis by any medical professional involved in a patient’s treatment, it would lead to quicker, safer treatment and save lives – in theory, at least.
In practice, the initial euphoria over computerising the NHS – first mooted in 2002 – has turned sour. It is currently running at least four years late and the budget has spiralled from £2.3 billion to £12.7 billion. In April 2007, a report by the House of Commons Public accounts committee concluded: “This is the biggest IT project in the world – and it is turning into the biggest disaster”.
The latest controversy surrounds people’s medical records.
The Department of Health and NHS Connecting for Health – a specialist directorate of the DH whose responsibility is the delivery of the National Programme for IT – want more than 50 million people in England to have an electronic “summary care record” and an electronic “detailed record”.
The detailed record would be similar to the current GP and hospital notes, but on a computer and accessible locally to everyone involved in your medical care. Instead of having separate records in all the different places where you receive care, all the staff treating you would have access to the information they need in one place.
The summary care record holds more general details of any medications, allergies and adverse reactions to drugs and is accessible nationally. It is the storing and sharing of this information that is causing a major storm. Plans for centralised summary care records have received repeated criticism over security fears and a lack of enthusiasm among doctors for the technology.
The British Medical Association has accused the Government of rushing it into place at “breakneck speed” without giving patients the chance to discuss it with their doctors and decide whether they want to take part. Doctors want an opt-in system where people have an informed choice as to whether they want their medical data on a national computer system. The Government has chosen a “presumed consent” system where people are automatically included unless they fill out a form to opt-out.
Medics are angry that the information packs sent out to every patient 12 weeks before his or her details are put onto the computer system do not contain an opt-out form. The patient must request one. Many GPs are refusing to upload information to the NHS Care Records Service. A London-wide group of local medical committees has unveiled a poster giving advice on how to opt out and has written to every GP in the capital urging them to display it.
People have never been asked if they want their confidential medical records on a national computerised database. And if too many opt out or choose to have certain information withheld – which they are allowed to do – the system will be of limited use and end up an extortionately expensive white elephant.
Which is why it cannot be rushed. There have already been significant delays in implementing every aspect of the National Programme for IT. Will a few more months – or years – make that much difference, if it ensures the Government gets it right?
While other aspects of the National Programme for IT, such as Choose and Book, do not involve patient confidentiality, computerised personal medical records certainly do. So it is essential that everyone knows exactly what it going on and is not faced with a fait accompli.
People will want to be reassured that their confidentiality is preserved, that their data is not at risk from hackers. Many distrust the Government on its ability to safeguard the personal data it retains on computer systems, as its track record on data security is far from good.
Personally, I believe that computerised records are the way forward and I think that when it is fully explained and all the security safeguards are in place, most patients will support it. After all, most people would agree that having our medical notes on computer at the GP surgery and computer-printed prescriptions have speeded up and improved care. Only the most paranoid would be concerned that surgery receptionists are secretly reading our medical notes – which were much less safe from prying eyes when they were in brown envelopes.
But I also agree with the BMA that the Government should suspend the scheme while outstanding issues are settled. It wants a stop to the rollout of summary care records, inclusion of an opt-out form in the information sent to patients and the permanent withdrawal of BMA comment on the Health Department’s promotional video. Until the acceptability, reliability and usability of the systems are resolved, it will never be a success.
Why all the rush anyway? Could it be anything to do with the general election? The Conservatives have pledged to scrap the centralised NHS personal medical records scheme if they win. Could it be that the current Government is trying to rush it through before the Tories might be in a position to cancel it?
