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Health: Confidentiality

Volume 706: debated on Wednesday 21 January 2009


Asked by

To ask Her Majesty's Government what plans they have to address concerns of patient representatives about the proposed measures in the forthcoming NHS Constitution that will allow researchers not clinically engaged in a person's care to access that person's confidential records without their knowledge or consent; and whether they have considered alternative measures that would enable research while protecting patients' rights to confidentiality. [HL675]

The National Health Service Constitution published on 21 January 2009 includes seven principles that will guide the NHS. The third principle refers to the NHS commitment to innovation and to the promotion and conduct of research to improve the current and future health and care of the population.

The NHS Constitution also commits the NHS to two pledges relating to informed choice. In the explanation for these pledges, the accompanying handbook makes the following statement about research.

Research is a core part of the NHS. Research enables the NHS to improve the current and future health of the people it serves. The NHS will do all it can to ensure that patients, from every part of England, are made aware of research that is of particular relevance to them. The NHS is therefore putting in place procedures to ensure that. patients are notified of opportunities to join in relevant ethically approved research and will be free to choose whether they wish to do so.

The procedures under development will not allow the NHS to disclose a person's confidential records to researchers without consent and are intended to inform patients about research so that they can choose whether to take part. The procedures will ensure that, when the NHS supports preparations to notify patients of opportunities to join in relevant ethically approved research, staff who use care records to select those patients are bound by a duty of confidentiality and use confidential information no more than necessary for the purpose. Special permission under Section 251 of the NHS Act 2006 is required before health service bodies may disclose a person's confidential records without consent to researchers not engaged in that person's care.