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Patient data sharing plans condemned by doctors

By Steve Nowottny

The leaders of eight leading healthcare organisations have demanded a meeting with Justice Secretary Jack Straw to discuss new legislation which could see patient records used to target suspected terrorists.

A joint letter from the eight bodies, including the BMA, RCGP, Academy of Medical Royal Colleges and medical defence bodies, raises ‘grave concerns' about plans outlined in the Coroners and Justice Bill which would give Government departments across Whitehall ‘unprecedented access' to confidential records.

The letter warns: ‘The Bill will undermine the presumption of confidentiality, corrode trust in the doctor-patient relationship and could have a disastrous impact on both the health of individuals and the public.'

BMA chair Dr Hamish Meldrum said: ‘The doctor-patient relationship is based on trust. If patients cannot be 100% sure that their records are confidential, they will inevitably be reluctant to share vital information with their doctor.'

‘The Justice Secretary has indicated that he is willing to amend this legislation to protect a person's right to confidentiality. We welcome the fact that he is taking people's concerns on board, and hope he will provide assurances that confidential health information will be exempt.'

The joint letter was backed by the health data watchdog the National Information Governance Board for Health and Social Care, which also called for health and social care records to be explicitly excluded from the scope of the bill.

A spokesman said: ‘The board is concerned that Information Sharing Orders may make patients and service users unwilling to divulge relevant but sensitive personal information to the professionals caring for them. This would be to their personal detriment and also to the overall purpose of the NHS and social care.'

‘It also believes that Information Sharing Orders could undermine the success of the NHS Care Records Service, which includes benefits to medical research, if there is a reduction in the accuracy or completeness of the information that is available.'

Mr Straw last week indicated that some parts of the bill could be rewritten after an outcry from civil liberties campaigners and MPs from all parties.

The joint letter in full

Dear Mr Straw

We welcome your recent decision to rewrite the Coroners and Justice Bill and would like to request a meeting with you to discuss this further. We have grave concerns about the widespread powers Clause 152 of the Coroners and Justice Bill gives to ministers as written. In our view, the Bill will undermine the presumption of confidentiality, corrode trust in the doctor-patient relationship and could have a disastrous impact on both the health of individuals and the public. Many key public health goals will be put at risk. We are seeking your assurances that confidential person-identifiable health information will be exempt from this legislation and this will be included as part of the amendments to the Bill.

Both common law and the Data Protection Act (DPA) 1998 enshrine an individual's right to have the data stored about them protected. The DPA in particular includes the principles that data must be processed for limited purposes, be adequate, relevant and not excessive, and not kept longer than necessary. The principles of the Data Protection Act 1998 are fundamental to the functioning of the National Health Service. We are therefore extremely concerned that the Coroners and Justice Bill, as currently drafted, allows the override of these principles, and rather than protecting confidentiality, permits an unjustifiable level of sharing of confidential person-identifiable health data.

The doctor/patient relationship is based on trust. In the course of consultation and treatment, patients will often disclose highly sensitive information on the basis that it will be kept confidential. The Bill, as drafted, will mean that doctors will no longer be able to reassure patients that their confidential information will only be accessed by those who are directly involved in their care. This could result in patients withholding information or even avoiding the healthcare system altogether. This could have disastrous consequences both for the health of individuals and for the wider public. We can provide real life, anonymised examples of cases where patients have been reluctant to share health information vital to their care due to concerns about confidentiality. In such cases it has been trust in the doctor and assurances that information will remain confidential which has finally resulted in disclosure.

We also have serious concerns about the impact of the Bill on broader health policy issues. As currently drafted, there is nothing in the Bill to prevent the Government overturning the confidentiality clauses of the Human Fertility and Embryology Act or even of the Venereal Disease Regulations. In our view, the proposals will also be in violation of Article 8 of the European Convention of Human Rights (ECHR). The government has invested significant public funds in the NHS Care Records Service and the Bill could damage confidence in the system. A loss of public trust could result in patients opting out of sharing their data, affecting their care, impeding public health initiatives and impacting upon the quality of research.

We fail to understand the problem to which this proposed legislation is the solution in relation to healthcare data. We support the use of certain healthcare data for appropriate research, commissioning and public health purposes. Section 251 of the NHS Act 2006 provides the legislation to enable the disclosure of health information where it is not possible to obtain patient consent. In addition, NHS Connecting for Health and the NHS Information Centre are working hard and consulting with various stakeholders to find solutions, which provide mechanisms to enable controlled access to anonymised and pseudonymised data under a robust governance structure. This Bill therefore comes at a time when progress is being made and its proposals could undermine these developments. With these existing mechanisms in place we can see no case for introducing sweeping powers to enable ministers to order the release of health information.

I would very much hope that you will agree to meet us at your earliest convenience so that we can discuss our concerns.

We look forward to hearing from you.

Dr Hamish Meldrum, Chairman of Council, British Medical Association
Mr John Black, President, Royal College of Surgeons of England
Dr Peter Carter, Chief Executive and General Secretary, Royal College of Nursing
Dr Stephanie Bown, Director of Policy and Communications, Medical Protection Society
Dr Christine Tomkins, Deputy Chief Executive and Professional Services Director, Medical Defence Union
Professor Steve Field, Chairman, Royal College of General Practitioners
Professor Alan Maryon-Davis, President Faculty of Public Health
Professor Dame Carol Black, Chairman, Academy of Medical Royal Colleges

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