National Statistics - access and disclosure issues for Vital Events data Allan Baker Office for National Statistics

National Statistics Code of Practice Protocol on Data Access and Confidentiality The National Statistician will set standards for protecting confidentiality, including a guarantee that no statistics will be produced that are likely to identify an individual unless specifically agreed with them.

Data release Does the Registrar General have the power (or Vires) to release the data? Is the release lawful and fair in terms of the Data Protection Act? New requests for individual birth or death records must be approved by the Health and Registration Subgroup of the Micro- data Release Panel.

The legal basis ONS releases data to the NHS under one of two Acts: National Health Service Act 1977 (Section 124A as amended by the Health Act 1999) –Public Health Mortality and Birth Files are supplied under this Act Census Act 1920 (Section 5) –Annual District Birth and Death Extracts are supplied under this Act

Types of information collected Entries in the birth and death registers. Information for statistical purposes: –from the informant: confidential information required under the Population Statistics Acts of 1938 and 1960; information provided voluntarily; –from the Medical Certificate of Cause of Death/Coroner’s Certificate; –from the NHS.

The NHS Act Allows the Registrar General to provide information from the birth and death registers to the Secretary of State for the management of the NHS. Primarily about the supply of text, but ONS also provides coded versions of the text to ensure consistency. Data Custodian for register information is in the General Register Office, Southport.

The Census Act Concerned with the production of statistics that monitor the condition of the population. Statistically coded information provided under this Act. Information is for monitoring public health, not managing individual cases. Data Custodian for statistical information is the Head of Vital Statistics Outputs Branch, Titchfield.

The Public Record ‘Public record’ is currently something of a misnomer. After implementation of the Civil Registration Review, ‘public record’ information will be more accessible. BUT... Less information on the public record: –address –cause of death –not part of the public record in future Provision in the legislation to allow NHS to have items not publicly available.

Declarations of Confidentiality Principle 8 of the Protocol: Access (to identifying data) will require authorisation and will only be allowed when the Head of Profession is satisfied the data will be used exclusively for justifiable research and that the information is not reasonably obtainable elsewhere. Anyone who has access to the data must have signed a short declaration stating that they understand the conditions of supply. Principle 7 of the Protocol: Data identifying individuals will be kept physically secure. ONS has the right to audit physical security arrangements.

Data sharing NHS must not pass disclosive or potentially disclosive information to people not accountable to S/S for Health e.g. local authority colleagues. Limitations on data sharing affect partnership working: –shared databases - need password controlled access; –finding solutions may be easier following the Civil Registration Review. NHS may of course share disclosure-controlled vital statistics.

Disclosure Control Current policy is to suppress any cell under 5 (including 0s) and to apply secondary suppressions as necessary to avoid the possibility of disclosure by subtraction. NHS must follow this for everything published, whatever the medium, except reports for internal use only. ONS investigating software to assist with disclosure control. For the future, ONS is looking at the issue of different thresholds for different geographies/populations at risk.

Disclosive statistics What indicators could be potentially disclosive? 1. Numbers of events 2. Rates where the denominators are available, e.g. age-specific death rates 3. SMRs with confidence intervals 4. Years of life lost Non-disclosive statistics: 1. Life expectancy at birth results 2. Directly-age standardised rates - except with disclosive zeros

Boundary issues Primary Care Organisation and Local Authority coterminosity Data for PCOs should not normally be released where boundaries not coterminous with LAs as at April Census Area Statistical wards and electoral wards Super Output Areas

Contact