Privacy
The OHTN has gone to great lengths to ensure the safety and security of the personal medical information of its voluntary participants. Following are some of the measures we take to protect OHTN Cohort Study participant’s anonymity and confidentiality involving:
Consent
No information is ever gathered in to the OCS database without voluntary, informed consent from participants who are free to withdraw from the study at any time.
Anonymity
All data collected for the OCS is stripped of all personally identifying information (name, address, health card number, etc.) before it is transferred to the database. Elements of that personal information are first used to generate an extremely complex unique identifier through a process known as pseudonymization. This unique identifier allows each person’s information to be accurately tracked while keeping his or her identity confidential. It is completely anonymous and cannot be “de-scrambled” to reveal any of the original data elements that created it.
Transport Security
All data sent to the OCS database is encrypted (scrambled) during transmission. Some participating sites use a computer-based system – a clinical management system (CMS) – for keeping medical records. These sites communicate with the OHTN over a secure communications network that uses the same state-of-the-art transmission security as financial institutions. Data is sent to the research database over this secure connection.
An electronic data extraction tool is utilized to collect data from sites that utilize paper medical charts and that data is then transferred to the OCS database via an encrypted data storage device.
Data Access
The OCS Governance Committee has final approval over who can access specific subsets of the OCS data and for what purpose. The committee is made up of people living with HIV/AIDS and other stakeholders in the Ontario HIV community who assess each request regarding the soundness and ethics of the data’s intended use.