While undertaking a study of socio-economic differences in access to health care in Canada, a team of university researchers from five provinces has revealed a deeply flawed and fractured system of provincial/federal health data keeping. The result is an examination of the barriers to assembling data for appropriate research purposes. Although a study examining inequitable access to prescription drugs, home care and long-term care is still expected, in this report the researchers outline a complex and time-consuming array of approvals, clearances, contractual arrangements, and policies that had to be cleared before the project could proceed. They encountered provincial diversity in legislation, policies, and procedures to ensure privacy and confidentiality of personal health information; little support for data sharing between provinces; and conflicting bureaucratic priorities. Data-keeping itself was problematic, with different coding systems in each province for physician claims, hospital discharge data, and other databases, creating a major barrier to interprovincial research on health services utilization and outcomes. The authors suggest that their organizational framework — a pan-Canadian network of researchers, analysts, provincial research centres, and federal agencies — could pave the way for future research. The study sheds light on the inefficiencies in data collection and data protection systems in Canada, which will require political and administrative will to resolve.
This project was supported by the Health Transition Fund, which was created in 1997 to provide support for evidence-based decision-making in health care reform by supporting pilot and evaluation projects which test innovative approaches to health care delivery. The views expressed herein do no necessarily represent the official policy of federal, provincial, or territorial governments.