How we process your data
When participants joined the EPIC-Oxford Study between 1993 and 1999 informed consent was given by each participant to allow the study to access their medical records for research purposes only.
Soon after the recruitment of participants, using this consent, identification details of participants were provided to the Office of National Statistics to collect cancer and death information for participants for our research.
The consent given at recruitment was also used in subsequent years to obtain information from these NHS health data providers:
- NHS England - Mortality data and cancer diagnoses in England and Wales
- National Records for Scotland (NRS) - all hospital admissions, mortality data, cancer diagnoses in Scotland
- Patient Episode Database for Wales (PedW) - all hospital admissions in Wales
- Public Health England (PHE) – Information on cancer diagnoses and treatment (part of NHS England from October 2021).
- NHS Trusts – pathology reports and other information not obtainable via data providers.
In 2008, a mistake was made in our application to request Hospital Admission Records (Hospital Episode Statistics data) for participants in England. The existing consent for access to medical records was not used for the legal basis, and instead an application was made to collect the hospital admission records about participants in England using Section 251 of the National Health Service Act 2006, which waives the requirement for consent, and provides an alternative legal basis for collecting this information. This was approved by the Confidentiality Advisory Group in 2008, and again in 2015. The use of Section 251 in EPIC-Oxford has only been for participants in England, all linkage to NHS Scotland and NHS data for Wales has been conducted under consent throughout the study follow-up since 1993.
When Section 251 is used as a legal basis to collect information about individuals in a study, any participants who registered with the NHS for their health records not to be shared for research and planning (“opted out”) have this opting out choice applied to the health information provided by the NHS to EPIC-Oxford. Consequently this reduces the numbers of EPIC-Oxford participants reported to the study as being diagnosed with illnesses during their life. This information is collected from Hospital Episode Statistics (HES) Data provided by NHS England. This causes a disparity between the deaths and cancer data (where all occurrences are provided under the legal basis of consent) and the Hospital Episode Statistics data provided to EPIC-Oxford, which may bias the results. Therefore changing the legal basis for HES data to be received under the legal basis of consent will improve the quality of our research.
The EPIC-Oxford researchers have applied to both CAG and NHS England to ask for the Section 251 status to be removed and to be able instead to collect the hospital information data for England using consent as the legal basis. CAG advised that NHS England should review this because they are the data provider.
This has now been reviewed and the independent committee that oversees the data releases from NHS England (IGARD) has agreed that the legal basis of consent can be used to obtain the Hospital data for EPIC-Oxford participants in England.
This change in processing participants’ data has also been discussed in an EPIC-Oxford participant panel meeting where it was agreed by participants that the consent given to access medical records at enrolment into the study was understood by the participants to apply to all medical records, including hospital records from England.
We would like to make it clear that if a participant is not happy with this decision or wishes to opt-out of the EPIC-Oxford study then they should inform us in writing (see Frequently Asked Questions, ‘Can I withdraw from the study?’ for address) and we will ensure that their data are no longer used in our research.