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Source: British Computer Society press release 5 Feb 2001

The privacy of patients' personal medical data risks being compromised by proposed legislation which will give the Secretary of State discretion over the way such sensitive information is used and shared between medical organisations — so says the British Computer Society (BCS), Europe's biggest professional body for computing specialists. The BCS is calling for the withdrawal of Clause 59 of the Health and Social Care Bill, or at least a full review of the proposed legislation by the Data Protection Commissioner.

The Society's Primary Health Care Specialist Group, the leading group in the field of healthcare informatics, with over 400 members, is in the forefront of those voicing concern, with support from security experts, data protection specialists and those concerned with human rights issues.

Mike Bainbridge, Chairman of the Specialist Group, said: "We are particularly concerned that this provision could undermine the excellent progress that has been made towards the greater use of electronic clinical information to deliver good patient care and to drive appropriate commissioning decisions. We believe that Clause 59 has no place in proposed legislation, which is in other respects soundly based, and it should be withdrawn."

The BCS has issued the following statement:

We urge the Data Protection Commissioner to carry out a full review of this proposed piece of legislation. There is an urgent need for the Data Protection Commissioner to develop broader ideas of how data protection principles should best be supported and applied in the NHS and in line with the recent Human Rights Act.

Clause 59 should be withdrawn. We believe that if the Secretary of State wishes to introduce changes, he should first make a case to support them. A process of consultation should then begin involving the BCS and other professional bodies such as the British Medical Association.

Government ministers have recently emphasised the importance of patient consent, in respect of the removal of human tissue. Yet the government is now introducing legislation that will limit the patient's right to consent to the use of personal healthcare information. At the same time, it is seeking to create an assortment of powers, not always clearly defined, whereby the Secretary of State can dictate the way patient information is divulged.

We are in favour of using anonymous medical information in the public good but not divulging an individual's private personal data to "be shared between organisations for medical purposes". For example, there have been recent reports about insurance companies having access to medical records and asking for such information prior to entering into policy agreements.

The declared purpose of this Clause, according to the explanatory notes which accompany it, is to: "enable the Secretary of State to require or permit patient information to be shared between organisations for medical purposes where he considers that this is in the interests of improving patient care or in the public interest. It also prevents patient information being shared."

This implies new powers for the Secretary of State in judging how individual privacy should be balanced against the release of information for administration and research. However, there is already a considerable amount of legislation, some of it enforced by the Data Protection Commissioner, which seeks to address this balance. Why are new provisions required?

The answer is certainly not to be found by considering the measures as set out in Clause 59, which gives the Secretary of State a miscellany of powers. Some of these enable him to put additional restrictions on data flows; others allow him to dispense with existing restrictions. These new powers could be used and justified in a wide variety of situations.

The rulemaking powers are not being sought as a result of consultation, or of some widely perceived loophole affecting private information. The intention of the Clause appears to be to cover as many contingencies as possible. This suggests a supermarket mentality. Provisions are being stockpiled, just in case they may be needed.

Poorly thought-through legislation creates tensions with other legislation. There is conflict between the new Data Protection Act and the Regulation of Investigatory Powers Act (RIP) over employees' right to privacy in the workplace and employers' rights to investigate. We see the same sort of issue between the recent Human Rights Act and RIP. These points have yet to be tested in the Courts.

Some causes for concern

The proposed extension to the Secretary of State's powers should be seen in the context of other current developments affecting primary care. For example, The NHS Plan, and the Secretary of State's statement to the House of Commons, while promising respect for patient confidentiality, promise increased openness in the provision of information about the performance of health services. Patients increasingly expect to exercise their right to consent. Such expectations were recently endorsed by the Secretary of State, in statements about the removal and storage of human tissue.

Faced with these trends and pressures, Clause 59 offers a centralist and paternalistic solution which is likely to seriously damage relations between clinicians and their patients, as well as clinicians and those seeking to research and report healthcare.

The Secretary of State will be given a wide discretion to intervene. Before framing regulations, he is only obliged to consult "as he considers appropriate".

We believe patients deserve legislation that has been brought forward in a much more careful and judicious way.