Back to Top

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 you to 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 related to your blood sample 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 blood 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 insurance companies.
  • All blood samples will be given a unique code and no personal information will be kept on tubes that store blood samples. Samples are processed at accredited laboratories and stored in repositories located in Canada.