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 Intermediate Adenomas and All Adenomas (IA-AA) studies

The CSPRG at Imperial College London processes special category personal data for the IA-AA studies. The special category personal data used in this study is crucial to the success of this project and thereby the beneficial impact on patients and the NHS.

Who/where have we received data from?

Imperial College London (the data controller for data processed by the CSPRG, see above) are the recipient of data for the IA and AA studies. The special category personal data for the IA and AA studies is received by the CSPRG from several sources, given below.

  1. NHS hospitals in in England and Scotland

The CSPRG received clinical data – such as the results of endoscopies – from 17 participating hospitals in England and Scotland. The 17 participating hospitals were:

  1. NHS England

NHS England (previously NHS Digital) collect and process data from across the health and social care system in England. For patients in England, we received cancer incidence and mortality data from NHS England. NHS England also received cause of death data for patients in England from the Office for National Statistics which were passed on to the CSPRG.

  1. The Office for National Statistics

The Office for National Statistics provided cause of death data for patients in England to the CSPRG via NHS England.

  1. Public Health England

Cancer staging data for patients in England were provided to the CSPRG by Public Health England.

  1. NHS National Services Scotland

For patients in Scotland, cancer incidence and mortality data, cause of death data and cancer staging data were provided to the CSPRG by NHS National Services Scotland.

  1. NHS Central Register

For patients from England who moved to Scotland during the course of the study, cancer staging data were provided to the CSPRG by the NHS Central Register.

What type of information does the CSPRG hold for the IA-AA studies?

We hold medical data for the people included in the study. This includes:

  • Dates of birth – this allows us to check our data if issues arise during analysis.
  • Sex
  • Family history of cancer
  • Colonoscopy results and quality of the colonoscopy
  • Cancer diagnoses including cancer stage
  • Details of deaths

All personal identifiers except for date of birth were removed from the data before we received them. The file that holds the identifying details was held at each of the hospitals from which the data was collected. This means it was not possible for us to personally identify any of the people involved in the study.

All data we received from data providers are pseudonymised. Pseudonymised data are personal data that can no longer be attributed to a specific individual without additional information because easily identifiable identifiers – such as names and NHS numbers – have been removed from the data before it is received by the CSPRG. This means that we cannot link the data we receive to other personal or special category personal data.

A subset of the AA study data was sent to our collaborators at the Health Economics Research Centre at the University of Oxford, so that they could conduct a health economics analysis. Imperial College London remained the data owner of this data subset and the University of Oxford acted as a Data Processor. The University of Oxford have completed the health economics analysis and deleted their copies of the data. This data processing was covered by a data sharing agreement between Imperial College London and the University of Oxford.

What approvals have these studies received?

As the studies initially involved over 250,000 people, it was not possible to individually ask them for their consent. Instead, these studies were approved by several organisations who protect NHS patients and their data. These organisations include:

  • The Royal Free Research Ethics Committee – The job of this committee is to consider whether research studies are ethical or not. They protect the rights, safety and dignity of people who take part in research.
  • 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 studies.
  • 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 Association of Cancer Registries – cancer registries hold information about cancer patients throughout the UK. They have a responsibility to ensure that the confidentiality of their data is maintained.

How long will we hold the data?

We have funding to continue analysing the data until 2028. 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 from IA and AA until 2038.