Message for Study Participants – change in the way we process your data

EPIC-Oxford Action Plan for IGARD
Please note that there have been changes in the way that we process participants’ data, please read the changes below:

• When participants joined the EPIC-Oxford Study in 1993-1999 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 other NHS health data providers. These are listed below:

o NHS Digital – Mortality data and cancer diagnoses in England and Wales
o The Information Services Division (ISD) Scotland – all hospital admissions, mortality data, cancer diagnoses in Scotland
o Patient Episode Database for Wales (PedW) – all hospital admissions in Wales
o Public Health England (PHE) – Information on cancer diagnoses and treatment.
o 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.

• The researchers have recently applied to both CAG and NHS Digital to ask for the Section 251 status to be removed and to be able instead to collect the Hospital information data using consent as the legal basis. CAG advised that NHS Digital 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 Digital (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 participant’s data has also been discussed in an EPIC- Oxford participant panel meeting where it was agreed amongst participants that the consent given to access medical records at enrolment into the study was understood by the participants present at the meeting to apply to all medical records and 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 follow the opt out link here and we will ensure that their data are no longer used in our research.

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