Million Women Study: Data Sharing
We welcome proposals for data access and sharing by bona fide researchers.
The Million Women 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.
• Data for 1.3 million 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 1996 and 2001, and on resurvey questionnaires 3-5 years apart. The study questionnaires can be viewed here. Second, participants gave permission to link to their medical records, and we have follow-up information from NHS databases on deaths, cancer registrations, hospital admissions, cancer screening and some primary care records.
• Blood samples for about 50,000 women have been collected and DNA extracted for about 20,000.
A summary of data collected so far can be seen here.
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:
We follow a controlled data sharing model, providing access to anonymised (de-identified) study data only, for collaborating and independent approved researchers. A flow chart of the data access procedures is available here.
Requests are considered by the study’s Principal Investigators (Professor Valerie Beral, Professor Jane Green and Professor Gillian Reeves) and the Million Women Study Advisory Committee. 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 Million Women Study data must have ethical approval.
Million Women Study 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 Million Women Study 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 Million Women Study data should be made by email to Ms Hayley Abbiss, Data Access Coordinator for the Richard Doll Centenary Archive (firstname.lastname@example.org), using the Million Women Study Data Access Preliminary Enquiry Form