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Health data in Ontario Susan Bondy, U. of Toronto Dalla Lana School of Public Health Presented at: Health Over the Life Course , Pre-conference Workshop University of Western Ontario, October 14, 2009 [email protected] Data sources • Health surveys, – Federal, Provincial, sub-provincial • • • • Vital statistics data National hospitalization data (CIHI) Provincial health system data Special disease registries, etc. Health Surveys • Ontario Health Surveys – Custom in 1990; NPHS/CCHS buy-ins • Rapid Risk Factor Surveillance System (RRFSS) • Ongoing thematic surveys, e.g., – CAMH OSDUHS (school survey since 1977) and Adult “Monitor” surveys Recipient data and linkage • Registered Persons Data Base (RPDB) – ‘accounts-level’ records for Ontario Health Insurance Plan beneficiaries – OHIN linkable to services funded by Province – Not a registry of population, but of accounts • E.g., death clearance is not aggressive • Some research centres have created cleaner versions Hospital data • All Ontario hospitals participate in CIHI databases – Emergency care, rehab. since 2000-2003 – Mental health facilities ~2005 • CCAC (home care) data system ~2005 • High quality data with patient, disease, and care elements Drug data • Ontario Drug Benefits Plan: – Residents over 65 • Fact and quantity in data • Not dose, co-morbidity (or, necessarily, indication) – If dispensed in hospital, or special cancer drugs program • Paid for; not necessarily in data – Prescription drugs for <65 year olds • Need-based provision (“Trillium Program”) • For individual-level data, rely on self-report surveys Drug data • Some special drugs (tracked via…) – Hospital-based dispensaries – Government-controlled access – Service fees for drug administration – Clinical care electronic data – All these examples apply to medical oncology – Gaps for other patient groups Ambulatory care / services • Procedures and maneuvers in hospitals observed via CIHI data – Procedure codes – Diagnostic data in same complex record • Claims (billings) to OHIP for services by registered providers (physicians and others, e.g., physiotherapists) “OHIP” data (i.e., claims data) • Limited data on patient – One diagnosis code (variation on ICD) • Many opportunities for misclassification error • Very little info. on context or intent • What done, without why. • Procedure codes of interest – May be highly informative • Specific to disease, purpose and provider – May not exist as desired • E.g., Pap. for screening (part of periodic exam; separate billing only for diagnostic test) – May be under-utilized “OHIP” data (claims data) • Increasing number and size of non-fee-forservices pockets • Shadow-billings system supposed to capture procedures • Preventive services may be provided (tracked) separately – E.g., Provincial cancer screening programs, other preventive programs (flu shot) Special disease and treatment registries (just a few examples) • • • • • Ontario Cancer Registry (OCR) Ontario Familial Colon Cancer Registry Ontario Trauma Registry Ontario Diabetes Registry Systemic Lupus International Collaborating Clinics (SLICC) • Ontario Cardiac Rehabilitation Registry (OCRR) • .... Acts of sharing • Health Protection and Promotion Act, 1990 • Freedom of Info. and Protection of Privacy Act, 1990 • Personal Health Information Protection Act, 2004 – Health custodians in regulations: • • • • 1. Cancer Care Ontario. 2. Canadian Institute for Health Information. 3. Institute for Clinical Evaluative Sciences. 4. Pediatric Oncology Group of Ontario • Health System Improvement Act, 2007 – Creates Ontario Agency for Health Protection and Promotion Current state of access and sharing • Data access is possible • By (and in partnership with) • Recognized health custodians • Partnership with Ministries of Health • No truly open data library or warehouse • Access is conditional on infrastructure, some extension of access to researchers (e.g., ICESQueens and proposed elsewhere) • Access improved in ~5 years, • especially inside the system) Partnering with data custodians • Usually requires a Co-Investigator (or PI) inside the custodian agency • Understand that these are academics in competitive settings, with restricted time for plethora of requests • Instantaneous partnerships have happened (don’t always) • Highly beneficial to have Government interest • A challenge for bureaucrats too (stretched; regardless of intentions) Selected external links • • • • • • • www.sph.utoronto.ca www.ices.on.ca www.cancercare.ca www.rrfss.ca www.camh.net www.apheo.on.ca www.chass.utoronto.ca/datalib/