1. 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 sue.bondy@utoronto.ca

2. Data sources Health surveys, –Federal, Provincial, sub-provincial Vital statistics data National hospitalization data (CIHI) Provincial health system data Special disease registries, etc.

3. 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

4. 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

5. 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

6. 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

7. 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

8. 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)

9. “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

10. “OHIP” data (claims data) Increasing number and size of non-fee-for- services 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)

11. 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)....

12. 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

13. 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., ICES- Queens and proposed elsewhere) Access improved in ~5 years, especially inside the system)

14. 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)

15. 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/