See Our Patient Data Protection and Privacy Notice

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 UKFSST study

The Cancer Screening and Prevention Research Group (CSPRG) at Imperial College London processes special category personal data for the UKFSST study. We use this special category personal data to examine the long-term effectiveness of a once-only flexible sigmoidoscopy. Effectiveness, in this case, refers to reduced incidence of bowel cancer, and a reduced chance of bowel cancer induced mortality. To determine this effectiveness, we need to process special category personal data relating to cancer incidence and mortality for participants enrolled in the trial.  The special category personal data used in this study is crucial to the success of this project, and the public good generally.

Who have we received data from?

Imperial College London, as data controllers for the CSPRG, are in receipt of special category personal data for the UKFSST. The special category personal data for the UKFSST are received by the CSPRG from several sources, given below.

  1. NHS Hospitals

The flexible sigmoidoscopy procedures were carried out in NHS Hospitals in England, Scotland and Wales. These hospitals, listed below, transferred the UKFSST trial data (i.e. the details of the procedure and relevant clinical data) to the CSPRG.

  1. NHS England

NHS England (formerly NHS Digital) collect and process data from across the health and social care system in England. For the UKFSST, NHS England provide the CSPRG with: cancer incidence and mortality data for patients in England and Wales; cause of death data for patients in England and Wales (see Office for National Statistics below); and bowel cancer screening data for patients in England (see Bowel Cancer Screening Programme below). Some of these data are provided to NHS England from other sources, described below.

  1. The Bowel Cancer Screening Programme

The Bowel Cancer Screening Programme manages screening tests for bowel cancer in England. The Bowel Cancer Screening Programme provide the CSPRG (via NHS England) with bowel cancer screening data for participants enrolled in the UKFSST study in England.

  1. Office for National Statistics

The Office for National Statistics provide mortality data and cause of death data for patients enrolled in this study from England and Wales. This information is provided to the CSPRG via NHS England.

5. The National Cancer Registration and Analysis Service

The National Cancer Registration and Analysis Service collects data about cancer diagnoses in patients in England. They provide cancer incidence data on UKFSST participants in England to the CSPRG via NHS England. For patients in England enrolled in the UKFSST, the National Cancer Registration and Analysis Service used to provide cancer staging data directly to the CSPRG but these data are now given to the CSPRG via NHS England.

6. Welsh Cancer Intelligence and Surveillance Unit

The Welsh Cancer Intelligence and Surveillance Unit collects data about cancer diagnoses in patients in Wales. They provide cancer incidence data on UKFSST participants in Wales to the CSPRG via NHS England. For patients in Wales enrolled in the UKFSST, the Welsh Cancer Intelligence and Surveillance Unit provides cancer staging data directly to the CSPRG.

  1. NHS National Services Scotland

The Information Services Division of NHS National Services Scotland manage the processing of health and care data in Scotland. For UKFSST participants in Scotland, NHS National Services Scotland provided the CSPRG with cancer incidence and mortality data, cancer staging data and cause of death data.

  1. NHS Central Register

For UKFSST participants moving from England to Scotland during the trial, cancer incidence and mortality data, cancer staging data and cause of death data are provided to the CSPRG by the NHS Central Register.

No individual-level personal data from the UKFSST was transferred out of the CSPRG or Imperial College London.

What type of information do we hold for the UKFSST study?

The CSPRG holds the following personal information as required for the UKFSST:

  • Patient data – name, address, date of birth, NHS number, named GP for everyone aged 55-64 years old at participating GP practices between November 1994 and March 1999.
  • Questionnaire answers – including information on family history of bowel cancer, symptoms, previous examinations, and diet and smoking habits.
  • Medical information – medical data collected before screening, details of symptoms, results of any medical tests or procedures, and results of blood tests
  • Cancer diagnoses – including stage of disease and microscopic analysis of the cancer
  • Records of deaths of people aged 55-64 years old at participating GP practices between November 1994 and March 1999.

We require this information to be able to answer our research questions and to guarantee the quality of our results. It will not be possible to identify individuals from the published results of this study.

Why do we need to hold identifiable information for this study?

We would like to know if our study members are diagnosed with cancer in the future. This data can be collected from NHS systems, but we have to provide NHS England with a date of birth and NHS number.  These details will be treated in confidence and in accordance with Data Protection laws.

What approvals has this study received?

Everyone who had a flexible sigmoidoscopy test during the UKFSST gave their consent for the procedure.

We were unable to seek consent from all the people we initially approached as this group was extremely large (over 335,000 people). It would not have been possible to ask each individual for their consent. Instead, we received permission to carry out this trial from several organisations who protect NHS patients and their data. These organisations include:

  • Local research ethics committees in each of the 14 centres – The job of these committees is to consider whether research studies are ethical or not. They protect the rights, safety and dignity of the people who take part in the studies.
  • Section 251 approval from the Patient Information Advisory Group – section 251 of the NHS Act 2006 is a legal term that temporarily allows the sharing of confidential information for medical purposes. Section 251 approval is only given if the sharing of this confidential information is strongly in the public benefit, such as for medical research studies.
  • Approval from the research and development departments at the NHS trusts involved in the trial.
  • Approval from the Caldicott Guardian of the North West London NHS Trust – they ensure that patient information is used legally, ethically and appropriately.
  • Approval from the UK Cancer Registries, NHS Digital, NHS Central Register and the Office for National Statistics – these organisations all manage patient data and have a responsibility to ensure that the data they protect is used legally, ethically and appropriately.

How long will we hold the data?

We will continue to collect follow-up data on the people who participated in the UKFSST until 2027, when everyone in the study will have had the opportunity to reach 80 years of age.

Imperial College London, who is responsible for this study, requires that we hold all data from clinical studies for 10 years after the end of the study. This means that we currently plan to hold all data until 2037.