Protecting Your Privacy
We know how important it is to keep information about your health private and confidential. When samples are processed and stored for future research, anything that personally identifies you, such as your name, will be removed and replaced with a unique code. This unique code will let us link the sample you have provided while allowing us to keep your identity confidential. Only a handful of staff at the Ontario Health Study have access to the electronic key that matches your unique code to your identity.
Your coded information is encrypted, or “scrambled,” before it is transferred to our data centre. Coded information is only transferred over secure connections similar to those used for online banking. These secure connections are very difficult for outsiders to breach. The coded information is then stored on encrypted servers (very large computers) in a locked room that very few people can access. We only unscramble the information after it has safely arrived on our servers. The information you provide will be stored on a separate server from your questionnaire responses or anything that personally identifies you (e.g., name, address, OHIP number).
Access to Data
All test results are de-identified and stored on secure servers at the Ontario Health Study. Access to the data and samples is governed by strict guidelines that protect the confidentiality of participants:
- All health researchers using data from the Study must receive approval from a Research Ethics Board or similar committee before access is given.
- No information about you will be given to your employer, family members or commercial entities such as insurance companies.
- Samples are processed at repositories located in Canada. All samples will be given a unique code and no personal information will be kept on tubes that store blood samples.