SAHSU maintains a large data collection of health records and population-based data that are used to study trends in chronic disease including environmental risk factors. Our research is used to protect the health of the population and to support improvements in health and care outcomes. Having data on the entire population is essential to allow us to investigate national environmental health concerns, conduct disease surveillance and detect disease clusters.
Our health data collection consists of the following:
- Hospital administrative data regarding all admissions, and Accident and Emergency attendances at NHS hospitals in England
- Cancer registrations (England and Wales)
- ONS deaths registrations
- ONS birth and still births registrations
- British Isles Network of Congenital Anomaly Registers
- Scottish births, mortality and congenital anomalies
Major and unique features of SAHSU are the range of both environmental and health data held and our expertise in handling health data at small area (neighborhood) level. Our national health datasets currently contain over 600 million patient records. These are held in a secure, private stand-alone network. Our data fields include postcode or address of residence (there are currently ~1.7 million residential postcodes in use in the UK) and these fields are held in an encrypted format with restricted access. We need geographical information on place of residence to accurately investigate disease and health risks in neighborhoods (small areas) and to detect disease clusters.
Our health data come from a number of data providers including national records collected by the Office for National Statistics (ONS), the Welsh Cancer Intelligence & Surveillance Unit (WCISU), NHS Digital and other national sources. These data holdings are updated regularly on an on-going basis, with ONS, WCISU and HES data updated on an annual basis. Other health data are updated as required for specific studies.
Ethical and governance permissions to hold and use health data for environmental health research has been obtained from the Health Research Authority National Research Ethics Service (NRES) and the Confidentiality Advisory Group (CAG) which advises on Section 251 of the NHS Act (2006).
SAHSU additionally hold small area data from the national Census on populations and socio-economic status (SES), including enumeration district, census output areas, lower layer super output areas, wards (see Table of Social factor data). We also hold environmental data from a range of sources (see Table of Environmental data) including our own research studies, the Environment Agency, Defra, the Civil Aviation Authority, Public Health England, the British Geological Survey and water companies etc. (e.g. see our Environment and Health Atlas for England and Wales, www.envhealth.co.uk). Maintenance of the databases (health, population, SES and selected environmental data) is conducted by the SAHSU database team.
Table of environmental data
Table of social factor data
Use of data within SAHSU
SAHSU recognises we have a legal and ethical responsibility to handle data which can be of a confidential and sensitive nature carefully and securely, and we are fully committed to doing that in a way that maximises its use while preventing unauthorised or inappropriate use or disclosure. We are respectful of the nature of the data we work with, where it comes from and what it means for individuals.
SAHSU data users are required to manage data, in compliance with information governance requirements and government legislation, and special care is taken with data of sensitive or confidential nature which includes health data. We ensure the following:
• Appropriate policies, procedures, accountability, management structures and computing hardware and software are in place to provide a robust governance framework
• Development of a culture of confidentiality and care when handling information
• Supporting staff through training - anyone accessing data have to complete both national and internal Information Governance (IG) training with annual refresher/updates. In some cases Office for National Statistics (ONS) Approved Researcher accreditation is also required.
All our research data are held on a stand-alone system (i.e. with no links to the internet or college networks) with controlled and restricted access. Confidential and sensitive data are held in encrypted database which can only be accessed by the database team. Researchers have access to only pseudonymised data.
We have a robust information governance framework for information management and we have deployed a range of privacy enhancing technologies, physical security measures and audit procedures to ensure that we manage data securely.
All researchers using the data are affiliated to SAHSU. New study concepts are initially approved by either the Director or Assistant Director of SAHSU, the SAHSU-Public Health England (PHE) Liaison Committee and have formal minuted approval from the appropriate PHE programme board.
Researchers on the SAHSU research team are required to sign the SAHSU confidentiality form, which includes a written acceptance of the security controls and guideline on the processing of patient data prior to be given access to research data. The level of data access granted is based on the requirements of the study. Research is conducted after SAHSU approvals, HRA NRES ethical and CAG approvals are in place and access to health data are additionally controlled by a series of agreements between SAHSU and data providers (e.g. ONS, NHS Digital, PHE, WCISU etc.). Each user of a dataset must sign to agree to the written terms set by the data provider.
Confidential and sensitive data are held within SAHSU’s secure encrypted database. All studies involving data with any risk of being potential identifiable (e.g. small area level data with small numbers of cases for a particular disease) are conducted on the “Private Network”, an air-gapped stand-alone network with no connection to either the internet or to the Imperial College IT network. We ensure that data are processed as permitted by law, statute and best practice. We follow the national guidelines on disclosure control procedures. We ensure not to publish any material that can potentially identify an individual in research outputs, including tables and maps. SAHSU adheres and conforms to The Office for National Statistics (ONS), data providers and national guidelines to suppress small numbers in all our publications.
SAHSU is fully compliant with the NHS Information Governance Toolkit.
SAHSU does not share data with third parties.