Privacy & Technology
RHSCIR is achieving a “gold standard” of privacy and security protection for data holdings. Our data collection and management policies and procedures respect and abide by all legal requirements across Canada, international data protection standards, and privacy and security best practices.
It is important to stress that the data provided to researchers does not identify specific individuals in RHSCIR. The data participants provide are stripped of all personal and identifying information, including personal contact information, before being provided to researchers who access the data. However, it is also important to note that RHSCIR extends its privacy gold standard to all information that it collects and stores, including information that does identify participants personally.
Data collection and flow
A successful registry has several components—a centralized database where all information is stored, multiple locations where data is collected, and clear rules for collecting, sharing and accessing the data. RHSCIR bridges provincial and health region borders to collect data in all major Canadian spinal cord injury trauma and rehabilitation centres. These institutions collect data from participants at all points during their journey through the care continuum, from acute care to community integration.
Data usage
Researchers and clinicians, along with health care managers and administrators, are anticipated to be the primary users and beneficiaries of the data collected. We expect that they will request usage of the data for a variety of purposes:
> Generate and test hypotheses (i.e. determine correlations, observational studies)
> Resource for clinical trials - evidence-based practice
> Quality management (organizational, performance, and clinical outcome)
> Communication tool
> Program planning
> Policy development
Who has access to individual data held at RHSCIR?
Only a limited number of RHSCIR personnel have access to individual SCI data. Access is restricted to those personnel who need the data to carry out their job at RHSCIR. For example, some RHSCIR personnel may have access to data obtained from sponsored sites for data management purposes (e.g. to create de-identified sets of data for research) and to ensure participant information is complete and accurate. RHSCIR monitors and reviews its personnel’s access to data on a regular basis to ensure it remains appropriate.
RHSCIR may also share a sample of de-identified data with researchers that have a scientifically and ethically approved research proposal in place to further SCI translational research. RHSCIR requires these researchers to undergo a rigorous research access request and review process before they can receive access to data. This process is outlined in the Registry’s Data Use and Disclosure Policy (available upon request). This policy ensures that any access to SCI data by researchers follows the RHSCIR's “gold standard” for privacy and security protection.
In addition, RHSCIR does not disclose your SCI data to any unaffiliated third party, except if required or authorized by law.
How is the data captured?
The Registry collects data on a powerful platform called the Global Research Platform (GRP) was developed by the Rick Hansen Institute's in-house specialized IT team. It has been in use in RHSCIR sites since November 2011.
This platform allows participating sites to efficiently capture data using web-based forms that incorporate RHSCIR dataset. These include international spinal cord injury standards such as the International Standards for Neurological Classification for Spinal Cord Injury (ISNCSCI) - the international best practice for classifying neurological impairment.
In addition to RHSCIR, GRP is also be used as a collection tool for multi-centre clinical trials and other spine-related studies. Click here to learn more about the Global Research Platform.
Simplifying the process of coding very complex forms, and making them available online, is the overall goal of the GRP. Entering data in the hospitals will become a much more logical process, as best practices in data flow, usability and human interaction have been incorporated in the development. The ability for researchers to use local RHSCIR data immediately, along with the prospect of data being collected in real time using state-of-the-art security and privacy protocols, are other important features of the platform.