With SPOR funding from the Canadian Institutes of Health Research (CIHR), the Institute for Clinical Evaluative Sciences (ICES) has expanded its repository of health data and created a new division—Data and Analytic Services (DAS)—to better support Ontario health researchers.
Launched in March 2014, DAS provides more researchers access to research-ready and customized data sets in a secure environment. DAS also provides the scientific expertise, analytical tools, advice and support investigators need to conduct a wide range of studies cost-effectively, right from their own desktops.
According to ICES President and CEO, Dr. Michael Schull, “investigators also will be able to link their own data—the results of a randomized drug trial for instance—to ICES data to analyze a multitude of variables and track patient outcomes over time.”
Disease-specific data—of individuals with diabetes or heart disease, for example —are also available and will enable researchers to compare the costs and outcomes associated with different treatment regimes.
Established in 1992 by the Government of Ontario, ICES has the largest repository of Ontario health-related data. ICES data holdings contain about 80 different data sets, the majority of which are being made available in accordance with current data sharing agreements that protect the data and govern what gets shared.
Given the highly personal and confidential nature of the information contained in the ICES repository, multiple steps are taken to “scrub” the data and remove all personal identifiers. Data sets never actually leave the secure systems at ICES: research-ready and customized data sets are locked and uploaded to a designated folder in a secure virtual environment from which nothing can be removed, copied or altered in any way.
By streamlining access to new and existing data sets, Dr. Schull—who is also an emergency physician at Sunnybrook Health Sciences Centre and a Professor in the Faculty of Medicine at the University of Toronto—says patients will be better served. In time, and through the work of new national SPOR Networks, he expects a stronger national data infrastructure will evolve and enable researchers across the country to collaborate more readily and learn from one another.
In the process, he anticipates that “a space will be created for greater dialogue between health care providers and patients to address priorities from the patient perspective, such as access to and integration of care, communications, and the overall care experience—all of which drive perceptions of the quality of care patients receive. It should also bring the worlds of research, care and patients together to inform the research agenda and focus it on the issues of greatest interest and concern to patients.”
Health researchers from across the province can now submit an email request for access to ICES data sets through DAS, which provides access and support for approved projects on a fee-for-service basis. Responses are typically provided within two business days.
Once a project has been accepted, the highly skilled DAS staff work closely with investigators to carefully define the research parameters and information required to complete the project. They upload the agreed upon information to a secure virtual environment, grant access and orient investigators to the information and tools needed to analyze the data and complete the study.
DAS scientists and analytics experts remain available throughout the project life cycle to advise and support researchers. Upon completion of the study, research results and reports are generated, reviewed and released by ICES once the organization is satisfied that the outputs meet ICES’ privacy standards and requirements. Once the analytic plan has been fulfilled, the data and project folders are removed from the virtual environment and archived.
To date, DAS has received 50 requests for access to its data sets. Making these data sets and expertise more broadly available, Dr. Schull says, will lead to new partnerships and collaborations, and quite possibly, new avenues of research, improved treatment approaches and better outcomes for patients.
For example, ICES is already working with the Ontario Brain Institute (OBI) to link Brain-CODE demographic, genetic, and psychosocial information with the Institute’s health services utilization data to facilitate new areas of research related to brain disorders, including neurodegenerative diseases such as Alzheimer’s, Parkinson’s and ALS; neurodevelopmental conditions such as autism and ADHD; and depression, cerebral palsy and epilepsy. ICES is also working with the Population Health Research Institute (PHRI) to link their extensive randomized trial data to administrative data.
“We have a much better chance of finding solutions by looking at problems from a variety of perspectives—including the perspectives of patients and family members—and by engaging a variety of disciplines in our search for ways to improve the patient experience, health outcomes and system performance.”