What happens to my data?
Information for ASCEND participants about how your information is stored and processed.
Before you joined the ASCEND trial, you were sent an ASCEND Patient Information Leaflet providing you with details about the study. In that leaflet, we informed you that “The coordinating centre would seek information from participants’ own doctors and from NHS and other central registries about any serious illnesses (such as heart attacks, strokes, cancers etc) that occur. All such information would be used, in confidence, only for medical research purposes and for routine regulatory and audit purposes.”
The following questions and answers give you more detail about how information collected about you as part of the study is handled and processed.
How is information about me collected by the ASCEND study?
Information about people taking part in ASCEND comes mainly from the questionnaires you have completed on a regular basis. In addition, we may ask for information from your GP or your hospital records about serious illnesses such as heart attacks, cancers or severe bleeding episodes. Information is also received from NHS Digital which holds information nationally from the records that health and social care providers keep about the care and treatment they give; this information received by ASCEND includes information about hospital attendances or admissions (called Hospital Episode Statistics or HES).
We send your identifiable data (name, date of birth, NHS number and postcode) to NHS Digital who have a record of all hospital admissions and outcomes data from the Hospital Episode Statistics (HES) dataset and will link this information to individual participants in the study. NHS Digital also provide us with information relating to cancer registrations on behalf of Public Health England (PHE). In addition NHS digital provide us with information about people who may have passed away in order that we do not make contact and cause any distress to relatives. This information includes date and cause of death supplied on behalf of the Office for National Statistics (ONS) and is sourced from civil registration data.
Is the information about me collected by ASCEND secure?
All information is stored securely by Oxford University and is kept confidential. Access to the computer database is by unique combinations of usernames and passwords and only authorised study personnel can access information about participants. The building is secure with authorised swipe card access only. No individuals will be identified in any study reports.
What if I am no longer completing the follow-up forms?
For the results of ASCEND to be as reliable as possible, the study team need to try to find out what has happened to everyone who initially agreed to enter the long-term part of the trial. This is the case even if those people are no longer taking any study treatments or have not been in contact with the study lately. If you do not wish to be contacted or do not wish to have information about you collected or recorded then you should inform the study team using the contact details below. You do not need to give a reason and this will not affect your usual medical care in any way.
What will happen after the study finishes?
Information will continue to be gathered about you from NHS central registries beyond the end of the study treatment period so that any long term effects of taking aspirin or fish oils can be discovered. Anonymised information about study participants, which would not identify you, may be shared in the future with other approved medical researchers. Sharing of information with other researchers helps ensure that research is open to scrutiny and that best use is made of the information collected. Researchers at Oxford University will remain responsible for the security and validity of the information held.