1. Information Governance and Cancer Intelligence National Cancer Intelligence Network

3. ..but holding such information presents risks that must be managed through appropriate governance and security measures Losses of sensitive data: Breaches of trust / confidentiality: Inappropriate or misleading uses: Sources: BBC News; International Herald Tribune; Press Association; Associated Press; Nature

6. By providing a single, controlled repository of data, cancer registries can minimise risks to privacy and maximise benefits Cancer registration Cancer waits Hospital Episode Statistics Mortality data Radiotherapy / chemotherapy data Linked National Repository Commissioning Clinical Audit Research Analysis Data are collected once... ...processed and linked in a controlled environment... ...and released under strict conditions Cancer Registries Identifiable data (Encrypted) Identifiable data (Encrypted) Anonymised / pseudonymised data Data held in a secure environment

7. Cancer registry access policies are designed to prevent the disclosure of identifiable data into the public domain Identifiable Data Items: Name Address or postcode Full date of birth Full date or cause of death NHS or hospital numbers Potentially Identifiable Data Items: Individual records (even if they do not include identifiable information) Tables of data with cell counts of less than 5 based on: Tables of data containing cells that have underlying populations of less than 1000 areas where the total population is less than approximately 62,000 any area where data may be combined with PCT level data to provide information on population ‘slivers’ five-year age groups between 0 and 24 years where there is a non-negligible risk of disclosure No registry publications or reports ever identify individuals

10. Information Governance and Cancer Intelligence National Cancer Intelligence Network