Study Data: Access, Sharing and Collaboration

We welcome proposals for data access and sharing by bona fide researchers.

The EPIC-Oxford study is publicly-funded, and its rich data collections represent over 20 years of work by participants, funders and researchers. As the study continues, we want to make sure that the information we collect is used as well and as widely as possible for medical research.

This means that as well as using the data ourselves, we share anonymised data with other researchers to maximise its potential. In doing so, protecting confidentiality is our highest priority, and we aim always to maintain the reputation of the study, its funders and participants.

Information resources:

• Data for 65,000 participants, including individual information on important risk factors and health. These data are derived from two main sources. First, questionnaire information that was provided by participants at recruitment between 1993 and 2000, and on resurvey questionnaires at 5, 10, and 15 years after recruitment. Second, participants gave permission to link to their medical records, and we have follow-up information from NHS databases on deaths, cancer registrations and hospital admissions.

• Blood samples for about 20,000 men and women, and biomarker data from tests on these blood samples.

Consent and confidentiality:

Information is received in confidence, and we have promised study participants that their information and biological samples will be treated with absolute confidentiality and will be used only for medical research. Details of our study consent forms can be viewed here.

Our Information Governance and Information Security Policies are available on the Cancer Epidemiology Unit website.

Our data sharing model:

The Data Sharing and Access Policy for EPIC-Oxford conforms to the Medical Research Council’s Policy on Sharing of Research Data from Population and Patient Studies

We follow a controlled data sharing model, providing access to anonymised (de-identified) study data only, for collaborating and independent approved researchers.

Requests are considered by the study’s Principal Investigators (Professor Timothy Key and Associate Professor Ruth Travis). Decisions on data access are based on the scientific legitimacy of the requester and of their institution, and on assurances on information security and governance; and with regard to the study’s scientific reputation, the needs of funded study team research, the terms of participant consent, and regulatory requirements. All research using EPIC-Oxford must have ethical approval.

EPIC-Oxford data are held as part of the Nuffield Department of Population Health’s Richard Doll Centenary Archive and its Data Access Oversight Committee provides independent oversight of EPIC-Oxford data access decisions, and acts as an appeals body for disputed decisions.

Data for sharing are made available under a Data Transfer Agreement between the University of Oxford and the requesting institution; those receiving data agree to keep data secure, to use data for the agreed purpose only, to destroy the data once their study has finished, and not to attempt to identify study participants.

Applying for data:

Requests for access to EPIC-Oxford data should be made by email to Ms Hayley Abbiss, Data Access Coordinator for the Richard Doll Centenary Archive (email:richard.doll.archive@ceu.ox.ac.uk), using the Richard Doll Archive Data Access Preliminary Enquiry Form.

  • Older Articles
  • Newer Articles
Copyright © EPIC-Oxford