ICES Authority to Collect & Use Data
ICES is designated a prescribed entity under Ontario’s Personal Health Information Privacy Act (PHIPA) and the Coroners Act. This means that health information custodians, like physicians, hospitals or long-term care homes, as well as the Chief Coroner of Ontario, are permitted to disclose personally identifiable information (PII) to ICES without individual consent. Information provided under PHIPA is used for analysis in relation to evaluation, planning and/or monitoring of the health system. Information provided under the Coroners Act informs data analysis related to the health or safety of the public. ICES also may use personal information for approved research projects. Data custodians outside the health sector may also disclose personal information to ICES for specific uses under other legislation of Ontario or Canada.
A data sharing agreement (DSA) with each data custodian is required to govern the privacy and security of the information at ICES. Most of the data related to core health services are governed under a DSA between ICES and the Ministry of Health. As a prescribed entity, ICES’ practices and procedures must be reviewed and approved every three years by the Office of the Information and Privacy Commissioner of Ontario to ensure ICES protects the privacy of individuals whose information it receives and ICES maintains the confidentiality of that information.
Coded ICES Data
Most data collected by ICES initially include direct personal identifiers, such as health card number, full name, date of birth, gender and postal code. These identifiers are necessary for the accurate assignment of a unique, confidential ICES Key Number (IKN), or “code.” Each person in Ontario is assigned their own IKN, which is how ICES can link information across data sets.
The first step when ICES collects data for analytics and research is the removal of direct personal identifiers and assignment of the IKN to each record. Once records in a dataset have an IKN assigned, any directly identifying information is stripped from the data, and the resulting information becomes part of the ICES data inventory. Access to ICES data for analytics and research typically includes coded data only. There are, however, limited exceptions when identifiable data is necessary to recruit participants into “patient contact studies.” More information about patient contact studies is available in the Special Data Projects section of this page.
Using ICES Data
ICES data provides the flexibility to link individual records across a large breadth of data. This allows use of ICES data for a wide variety of topics. For example, analysts can link physician claims, emergency visits and inpatient hospital records with drug claims information to see how many heart attack sufferers were hospitalized and treated in a timely fashion and how many had subsequent appointments with specialists and were prescribed appropriate medications on a follow-up basis. The same study might also integrate updates on outcomes, such as subsequent health service visits or death, recorded five or ten years later. It’s this ability to link data and create a story over time that makes ICES data so rich. The ICES data inventory is stored on servers housed within a closed computing system at ICES Central on the campus of Sunnybrook Health Sciences Centre in Toronto.
Special Data Projects
ICES also participates in health informatics projects for which data records are collected directly at the bedside. These include:
- Health Outcomes for Better Information and Care (HOBIC)
- the Dialysis Measurement, Analysis and Reporting (DMAR) system
- the Ontario Implantable Cardioverter Defibrillator (ICD) database
For all such initiatives, patient records are gathered on the front lines of healthcare (via the ICES computing environment) and then used by service providers for clinical and quality improvements. As always with ICES, ICES removes direct personal identifiers like names and health card numbers and assigns the ICES confidential code, the IKN, before it is added to ICES data.
This constant expansion in the breadth of data holdings lends an added dimension of relevancy to ICES research. Relevancy, in turn, helps to ensure that studies and atlases continue to have a meaningful impact on policy and practice in the Ontario healthcare system.
Patient Contact Studies
ICES is currently piloting a small number of research projects called “patient contact studies” that aim to involve individual Ontarians in studies of ways to improve the healthcare system. Individuals who potentially meet the criteria for these studies based on prior health services received are contacted, potentially through their primary care provider, to confirm their eligibility for the study and to gauge their willingness to participate, after which fully informed consent is obtained. All ICES patient contact studies are reviewed and approved by the ICES Executive Committee and our Privacy & Legal Office and are also overseen by an Ontario research ethics board.