The Cancer Reform Strategy (CRS) has laid out the direction of travel for cancer information and the requirement for this information to be transferred electronically to local cancer registries by provider organisations.
The new National Brain Tumour Registry is based at the Eastern Cancer Registry and the data collection, transfer, storage and release complies with the current information governance requirements of the NHS. The English Cancer Registries have statutory permission under Section 251 of the NHS Act 2006, to collect and hold patient identifiable information without the need to seek informed consent from each individual patient; patients are free to opt-out should they wish. The policies and procedures governing the data holding at the Registries have been approved by the Ethics and Confidentiality Committee on behalf of the National Information Governance Board and are reviewed annually.
The Ethics and Confidentiality Committee, on behalf of the National Information Governance Board, reviewed the application of the Cancer Registries under section 251 in their meeting held on 20 July 2009. Download agenda and minutes of the meeting.
For further information see:
Section 251 of the NHS Act 2006
Health Service (Control of Patient Information) Regulations 2002 (Statutory Instrument 1438)
National Information Governance Board for Health and Social Care (NIGB)
Ethics and Confidentiality Committee (ECC)
Health and Social Care Act 2008
Further legal background is available from the UKACR See "Data confidentiality and security / Legal background".