Working with ICES data
ICES authority to collect and use data
ICES is a prescribed entity for the purposes of section 45 Ontario's Personal Health Information Privacy Act. This means that health information custodians — like physicians, hospitals or long-term care homes — are permitted to disclose personal health information about their patients to ICES without consent. This information is for statistical analysis in order to evaluate and monitor aspects of the health system. ICES may also use personal health information under the authority of PHIPA s. 44 for approved research projects. Data custodians outside the health sector may disclose personal information to ICES for specified use under the authority of FIPPA or other data-governing statutes.
A data sharing agreement (DSA) with each data partner governs the privacy and security of the information in the ICES data inventory. Most of the core health services data are governed under a DSA between ICES and the Ministry of Health and Long-term Care. ICES’ policies, practices and procedures for using data are reviewed and approved on a regular basis by the Office of the Information Privacy Commissioner/Ontario.
Coded ICES Data
Most data collected by ICES are record level with direct personal identifiers — usually health card number and/or last name, first name, date of birth, gender and postal code. This is necessary for the accurate assignment of a unique, confidential ICES number — or "code". Each person in Ontario is assigned his/her own ICES number. This ICES number (IKN) is the key to successful linkage across data sets.
The first step when ICES collects data is the removal of direct personal identifiers and assignment of a confidential code, the IKN, to each record. An IKN exists for every Ontario resident who has been eligible for health care over time. This identifier is created using a secure ICES algorithm that is based on the Ontario health card number. Once records in a data set have an IKN assigned, the directly identifying information is stripped off the file and the data become part of the ICES data inventory – uniquely coded and linkable across health services data bases within the inventory. Researchers have access only the ICES data inventory that contains coded data.
Using ICES Data
ICES data provides the flexibility to link individual records across a large breadth of data. This allows it to be used 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 that 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.