Data access and sharing
The Million Women Study is publicly and charitably funded and we want the data we collect to be used as widely as possible for health-related research. We welcome applications for open-access sharing with researchers around the world.
We have collected a vast amount of information on women in the study over the past 25 years, and aim to maximise the benefits of investment in time and money from participants, the study team, NHS and research funders.
When the study began in the mid-1990s, data sharing was not seen as a necessary part of medical research. We asked women joining the study for their consent for us to use information from the questionnaires and from their screening and medical records for medical research, but did not ask specifically about sharing data with other researchers. Today data sharing is a necessary and accepted part of medical research, and is encouraged by research funders and ethicists. Our Participant Panel strongly supports the principle of safe data sharing to maximise study benefit.
How we share study data
Collaborative research projects
We welcome proposals from researchers for collaborative research projects. These collaborations may involve researchers outside the Million Women Study team but within our own department, or they may involve researchers from other research institutions. Researchers from elsewhere may come to Oxford to work jointly with the study team, or we may do analyses in Oxford and share only the summary results. Any data which are shared as part of such a collaboration are only made available to collaborators after removal of all identifiers, and are subject to stringent security requirements. As the study has developed, we have kept participants informed of how their data are used in such projects via newsletters and publications which are available on this website.
open access data requests
We also welcome requests to share the Million Women Study individual-level data with bona fide researchers at other universities, so that they can do analyses themselves in their university. If we approve their proposed study and we are able to share data safely, the project will go ahead. We only share data which have had identifying details removed, and under strict legal agreement between the University of Oxford and the receiving university, to minimise potential security risks.
Most of our research, and that which others want to do requires both the information provided on our questionnaires, and the linked follow-up information on health which we receive through the NHS health records.
Currently researchers who would like to receive this linked data need to apply first to the Million Women Study and then to the NHS data providers for separate approvals. This is time-consuming and may mean the opportunity to share data is lost. We are, therefore, applying to the NHS data providers for permission for us to share the Million Women Study questionnaire data linked to the NHS data on health outcomes with other researchers under a single Million Women Study approval.
As at present the scope of the data would be tailored to each specific project, so no unnecessary data would be shared and all such data would have had any identifiers removed prior to sharing. This new method will allow more efficient data sharing with approved researchers from other universities but with the same safeguards and legal agreements in place.
We do not share data with commercial organisations, unless as part of a formal collaboration where they contribute valuable specialist expertise (eg for blood analysis) and the proposed research is likely to have clear benefits to health and/or social care. Any data shared as part of such a collaboration would only be made available to collaborators after all identifiers had been removed, and would be subject to the same stringent security requirements as for other data requests.