Confidentiality

Page contents

• Why do cancer registries need to collect identifiable information?
• How do we protect patient confidentiality?
• The legal background to cancer registration

Why do cancer registries need to collect identifiable information?

Cancer registration data is used for a variety of public health surveillance and health protection functions so it is important to ensure the quality and accuracy of the information that is collected.

As data are often collected from several sources, we need to make sure that the information for each person is recorded correctly and that duplicate records are not added to the database. We may also need to add further details to a registration at a later date because we have received additional information.

How do we protect patient confidentiality?

Trent, along with all other Cancer Registries, takes its responsibility for the collection, processing and transfer of identifiable patient data very seriously. The steps we take to protect patient confidentiality are summarised below but please see our Security and Data Protection Policy and Security and Data Confidentiality Operational Procedures for further details:

• the Registry meets the requirements of the Data Protection Act 1998 regarding the receipt, storage and transfer of personal information
• all Registry publications present only aggregated data
• the majority of the information released by the Registry to third parties does not identify individuals and every request for identifiable or potentially identifiable information must comply with the National guidelines approved by the United Kingdom Association of Cancer Registries (UKACR).
• data is only provided for research projects with full ethics and Ethics and Confidentiality Committee (ECC) approval (formerly the Patient Information Advisory Group (PIAG)).

If you are concerned about your details being registered or any other issues regarding confidentiality, please contact the Registry by telephone on 0114 226 3560 or .

The legal background to cancer registration

Cancer registries have legal support to collect data relating to cancer under Section 251 of the NHS Act 2006 (and formerly under Section 60 of the Health and Social Care Act 2001).

Section 251 allows the Secretary of State for Health to make regulations to set aside the common law duty of confidentiality for medical purposes where it is not possible to use anonymised information and where seeking individual consent is not practicable. The regulations made under Section 60 of the Health and Social Care Act 2001 (Health Service (Control of Patient Information) Regulations 2002 (SI 1438) continue to have effect under Section 251.

Responsibility for administering powers under Section 251 lies with the National Information Governance Board for Health and Social Care (NIGB) which delegated these powers to the Ethics and Confidentiality Committee (ECC). This role was transferred from the Patient Information Advisory Group (PIAG) under the Health and Social Care Act 2008. The ECC is required to make regular reports to the NIGB on its activities.

The support given to cancer registries under Section 251 is subject to annual review by the ECC on behalf of the NIGB.