Confidentiality in the WMCIU

Confidentiality of Patient Data

One of the key functions of cancer registries is to collect population-based data in order to monitor changes over time in cancer incidence, mortality and survival and in cancer diagnosis and treatment. The WMCIU collects data on cancer patients resident in and/or diagnosed or treated within the West Midlands. These data are collated from multiple sources and in order to ensure that the correct data are recorded for the right patient, we collect patient identifiers to enable us to cross-check records. We take very seriously the responsibility of holding identifiable patient data and have strict policies in place governing the handling, processing and transferring of patient data. A copy of our Confidentiality Policy can be downloaded here.

Legislation and the Patient Information Advisory Group

Section 60 of the Health and Social Care Act 2001 enables patient identifiable information needed to support essential NHS activity to be used without the explicit consent of patients. The data can only be used for medical purposes that are in the interests of patients or the wider public, where consent is not a practicable alternative and where anonymised information will not suffice. It is intended largely as a transitional measure whilst consent or anonymisation procedures are developed, and this is reinforced by the need to review each use of the power annually. Further legislation, the Statutory Instrument 2002 No. 1438, allows cancer registries to collect patient data without individual patient consent, subject to annual review by the Patient Information Advisory Group (PIAG). PIAG was set up to advise the Secretary of State on key issues, particularly those of national significance, relating to the processing of patient information.

The United Kingdom Association of Cancer Registries

The United Kingdom Association of Cancer Registries (UKACR), an organisation of which all cancer registries are members, has developed strict policies relating to identifiable patient data, to which all cancer registries must adhere. These policies are reviewed annually by PIAG, and can be viewed here.

For more information on service confidentiality use the links below: