The safety and protection of the UK population’s personal information or data is enshrined in UK law. As such, the Cancer Screening and Prevention Research Group (CSPRG) at Imperial College London is governed by all relevant UK legislation on keeping personal data safe. The CSPRG also adheres to all Imperial policies and best practice on information security and data protection, and implements additional group policies for the safe use and storage of all patient and public health data gathered for our cancer research studies.
Privacy and data protection information about the SOCCER study
The Cancer Screening and Prevention Research Group (CSPRG) at Imperial College London processed special category personal data for the SOCCER study.
The SOCCER study reused data gathered during the SIGGAR trials to investigate the potential efficacy of flexible sigmoidoscopy as an alternative to whole-colon examination. To fulfil the aims of the study and understand the long-term effectiveness of the different examination techniques, the CSPRG processed special category personal data to track the long-term health outcomes of study participants. The special category personal data used in this study was crucial to the success of this project, and the public good generally.
Who we received data from
Imperial College London was the recipient of data for SOCCER. The special category personal data for this study was received by the CSPRG from several sources, given below.
- NHS Hospitals in England
The CSPRG received demographic information, symptom information, consent forms, trial-linked clinical notes and treatment data about patients in the SIGGAR trials directly from the 21 hospitals in which the trials were conducted. The 21 participating hospitals were:
- Bradford Hospital, Bradford
- Frimley Park Hospital, Frimley
- Charing Cross Hospital, London
- Hammersmith Hospital, London
- St Mary’s Hospital, London
- Leighton Hospital, Cheshire
- University Hospital of North Tees, Stockton-on-Tees
- St Mark’s Hospital, London
- Nottingham City Hospital, Nottingham
- Nottingham Queens Medical Centre, Nottingham
- Oxford Radcliffe Hospital, Oxford
- Royal Oldham Hospital, Oldham
- Derriford Hospital, Plymouth
- Queen Alexandra Hospital, Portsmouth
- Royal Cornwall Hospital, Truro
- Royal United Hospital, Bath
- Withington Hospital, Manchester
- Wythenshawe Hospital, Manchester
- Queen Elizabeth Hospital, King’s Lynn
- Furness General Hospital, Burrow-in-Furness
- Royal Lancaster Infirmary, Lancaster
NHS England collect and process data from across the health and social care system in England. NHS England provided cancer and deaths data about patients enrolled in the SIGGAR and SOCCER studies to the CSPRG. NHS England received some of this data from the Office for National Statistics.
The Office for National Statistics process cancer and deaths data for patients in England. The Office for National Statistics provided this information to the CSPRG for the patients in the SIGGAR and SOCCER studies. The data were passed to the CSPRG via NHS England.
The SOCCER study team had access only to pseudonymised data for the patients included in the SOCCER study. Pseudonymised data are personal data that can no longer identify a specific individual without additional information.
What type of information do we hold for the SOCCER study?
The CSPRG holds personal information (such as name, full date of birth, NHS number) for the SOCCER patients only if they were randomised on the SIGGAR trials and the patient did not subsequently withdraw their consent. We do not hold any identifiable data for the remaining patients in the SOCCER cohort. Additionally, all the data held on the SOCCER database is de-identified and we hold:
- clinical data including data on bowel symptoms, examinations;
- cancer and mortality data from NHS England.
We completed data collection in November 2015.
What approvals has this study received?
This study was reviewed and approved by an independent ethics committee and other organisations with responsibilities for NHS patients and research in the NHS as follows:
- Northern and Yorkshire Multicentre Research Ethics Committee.
- Section 251 approval from Patient Information Advisory Group (PIAG), the National Information Governance Board (NIGB), predecessors of the Confidentiality Advisory Group (CAG) and CAG itself.
- Research and Development approval from the NHS Trusts managing all hospitals involved in the study.
How long will we hold the data?
Data collection for this study ended in November 2015. We have completed all analyses of the data and the study was closed in February 2022. It is a requirement of Imperial College London, the organisation responsible for this study, that we hold data from our studies for 10 years after the study end date. We therefore plan to hold the archived data for this study until 2032.