The ASPREE study protects the privacy of participants in a number of ways:
- All participants are allocated an ID number in place of personal information such as name and address. Information we collect is entered into a de-identified database via the secure ASPREE Data Entry website.
- Access to this web-based portal is only made available to registered study staff via a password-protected and secure login.
- Data held at the ASPREE Clinical Trial Centre is locked within a secure environment both physically (paper files) and electronically.
- Data collection, storage and management is centralised at the ASPREE Clinical Trial Centre in Melbourne, allowing us to track the location of files at any time.
- All ASPREE study staff have been trained and understand the importance of confidentiality and privacy. In addition, all ASPREE staff have signed confidentiality agreements as part of their employment for the study.
Frequently asked questions about privacy
Who will have access to my data?
Only a limited number of trained ASPREE personnel have access to information which may identify you, such as your name, address, and telephone number. Every ASPREE staff member and contractor has signed a confidentiality agreement as a condition of their employment.
ASPREE will never release your personal information to third parties unless ordered to do so by a court order or by law.
Can insurance companies, drug companies, employers, or my relatives find out about the results of research on my information?
No, they cannot. Your information is securely stored in a de-identified way. You have been allocated a study number which means information that can identify you, such as your name, address, or date of birth, is not recorded with your data.
Your information will NOT be released by ASPREE to any third parties unless ordered to do so by a court order or by law.
How does ASPREE access my health information?
Participants in the ASPREE study provide written consent to access their health and prescribing information held by Medicare, the Pharmaceutical Benefits Scheme, and medical records held with your doctor, specialist or any hospital you may attend. This includes access to a Coroner’s report or other government health records.
Only medical information that is directly related to the study will be collected, de-identified, stored and analysed for the purposes of the trial, and possibly a clinical audit undertaken by your GP.
What happens to information about me if I die while I am still a participant in the ASPREE study?
We sincerely hope this doesn’t happen! In that unfortunate event, information collected about ASPREE participants would remain in the database, de-identified and kept for research purposes.
How long will ASPREE keep information about me?
Indefinitely. Your information will always be associated with an ID number rather than your personal details. Furthermore, any research findings will never identify any individual in the trial.
What if I decide at some point that I no longer want to be involved in ASPREE?
Participation in the study and sub-studies is completely voluntary.
- There can be circumstances in which ASPREE participants need to cease taking the study medication (in some cases, this may be because they can’t risk being on aspirin, in other cases because they can’t risk NOT being on aspirin).
- ASPREE has been designed on an intention-to-treat basis – this means that each and every participant is very important to the trial, regardless of whether or not you have been advised to come off your study medication. We ask participants who need to cease study medication for medical reasons, to stay in touch and continue attending study visits. All health information is valuable – it tells us about your health with or without aspirin and provides the data necessary to complete the trial.
- Any ASPREE participant concerned that they are no longer able to be involved in the ASPREE study is encouraged to speak to a member of the research team before making any final decision. There are a number of options that may make follow-up easier for you.
- For any concerns about the study, please ring 1800 728 745 (toll free from a landline) for a confidential discussion.