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Last Updated: Sunday, 2 April 2006, 21:25 GMT 22:25 UK
The patient's right to know
Patients in a hospital ward
Freedom of information could allow patients to see important data

On 17 January 2002, the then Health Secretary Alan Milburn said in the House of Commons:

"The days have gone when parts of the NHS could behave as if they were a secret society. In the end, the NHS does not belong to anyone other than the public and patients it serves."

The current government is seeking to make the NHS more responsive to the needs of patients. For example, there are efforts to involve the public in decision-making and inspections at NHS trusts.

Despite the wealth of information now published by the government on standards in trusts, it can be still be difficult to get information which compares treatment or health outcomes in specific areas trust by trust.

Open question

In this programme, Panorama used anonymised data on breast cancer treatment which we then had analysed by an expert.

This information came from a body called the North Yorkshire Cancer Registry and Information Service (NYCRIS) which is one of nine regional Cancer registry centres in England.

There is more information about cancer registries, their function and the equivalent services in Scotland and Wales on the Department of Health website.

It is an open question as to whether this sort of information would be accessible to a member of the public either through the Department of Health which receives the information, or through the bodies running the registries.

In the past, this information would almost certainly have been kept within the NHS. However, following the Alder Hey organ retention scandal and the Bristol Royal inquiry a debate opened up about what information the NHS should be obliged to publish.

Mr Milburn made it clear that the Kennedy report into the Bristol scandal meant more, not less, information should be available to the public.

Death rates

Specifically, he worked with Society of Cardiothoracic Surgeons to agree that from April 2004 death rates within 30 days of surgery would be published for every cardiac surgeon in England.

The argument against publishing death rates was that if you created a situation where surgeons worried about their yearly "rate" it would discourage them from taking on the more complex or difficult cases, where death was a more likely outcome.

In any case, the date agreed came and went with only some of the rates for trusts and doctors being published.

A major leap forward in terms of the patient's right to know was taken with the passage of the Freedom of Information Act, which came into force in January 2005.

In January, the Observer quoted the information commissioner Richard Thomas saying: "We expect to see information about the performance of individual physicians coming out in due course."

Meanwhile, in March, the Guardian succeeded, through a Freedom of Information Act request, in getting risk-adjusted data on patient deaths or the mortality rate for individual heart surgeons following coronary artery bypass grafts (the most common form of heart surgery).

There are instructions on how to use the Freedom of Information Act and links to useful FOI resources on this BBC site and information about the Department of Health's Freedom of Information scheme is on their website.


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