Working With an ICES Scientist

Primary Data Collection (PDC)

Some ICES studies require additional detailed information to supplement administrative data, such as laboratory and diagnostic test results, patient clinical health status, well-being and social health determinants, or data on patients with particular health conditions to name a few. This detailed clinical information is often found in patient charts and clinical reports stored in clinical settings such as healthcare institutions or in physicians’ offices across Ontario.

ICES facilitates and manages such data. It is gathered on-site or remotely by trained abstractors using the ICES standard primary data collection tool called Research Electronic Data Capture (REDCap). Created in 2004 by Vanderbilt University, REDCap is an open-source primary data collection tool that is widely used across other healthcare and research organizations. ICES has implemented safeguards to ensure that all data collected in REDCap is unreadable to anyone but authorized project personnel. REDCap also features the ability to scan and upload documents for additional review or abstraction. Contact [email protected] to learn more or initiate a primary data collection project at ICES.

Project Specific Data (PSD) for ICES projects

Project Specific Data is data that is transferred to ICES for the purpose of a specific ICES project or, if permitted by the data sharing agreement (DSA) for a series of related ICES projects.

Bringing data to ICES will allow you to link the externally collected data to ICES databases. ICES uses the OHIP number as the unique identifier for making ICES data holdings linkable. When an OHIP number is not available for all or some patients in an incoming dataset, OHIP numbers are retrieved from the Registered Person Database (RPDB) based on other available direct personal identifiers such as names, date of birth and sex using record linkage methods. Non-individual data can also be brought to ICES.

The process to transfer data to ICES includes steps to ensure the requirements for protecting privacy of patients’ data are fulfilled.

The ICES Research & Analysis Program staff as well as the PSD project manager will facilitate the process.

For additional information about how to bring data to ICES and link it to ICES databases, please contact the Research & Analysis PSD project manager ([email protected]).

Data Access Support Hub (DASH)

ICES is proud to be a part​ of the Health Data Research Network Canada, and its launch of the Data Access Support Hub (DASH), a one-stop shop for researchers requiring data from multiple provincial, territorial, and pan-Canadian sources. This initiative is made possible through the Strategy for Patient-Oriented Research (SPOR), a collection of funding partnerships between the Canadian Institutes of Health Research (CIHR), provinces and territories, philanthropic organizations, academic institutions, and health charities.

By offering a single access point for multi-jurisdictional data requests, DASH simplifies the way researchers request data access and provides a clear point of contact for ongoing support throughout the process. DASH provides support in each jurisdiction to coordinate and facilitate requests, as requirements may vary by jurisdiction.

Researchers can sign up for a free DASH account on the DASH website to learn more about the datasets available for request through the platform, as well as an inventory of requirements and procedures for accessing data at each partner data centre. For general inquiries including initiation of a cross-jurisdictional project at ICES, contact [email protected].

The ICES Health Artificial Intelligence Data Analytics Platform (HAIDAP) was developed in collaboration with Compute Ontario, Vector, and HPC4Health with support from the Ministry of Economic Development, Job Creation and Trade in 2019. The HAIDAP is an ICES data environment capable of high-performance computing currently hosted within the HPC4Health private cloud and continues to support innovative research projects using novel analytic techniques. The HAIDAP functions as an extension of the ICES research analytic environment in terms of data governance and access, in accordance with ICES’ practices, and procedures. The space within the HAIDAP where ICES projects are conducted is referred to as the Data Safe Haven (DSH).

Key features

• Demonstrated capacity to maintain health data along with the technical capability required for AI/ML research (compute power and storage).
• Users have access to project-specific data, high-performance computing resources and traditional open-source statistical software such as R and Python.
• The high-performance computing environment is primarily comprised of graphical processing units (GPUs) for conducting large volume/storage analyses.