Planning without facts: Ontario's Aboriginal health information challenge

The majority of First Nations, Metis, and Inuit people living in the Canadian province of Ontario have less access to quality health care than the population as a whole. Yet improving the situation is hampered by the lack of an information system that documents fundamental facts about Aboriginal people's health status and services utilization. Without a means to collect such data, these knowledge deficits will persist, making the planning and provision of culturally appropriate services impossible. The Ontario Health Quality Council commissioned a study to (1) review data collection systems in other Canadian jurisdictions and (2) determine what Ontario needs in order to have a comprehensive Aboriginal health information system. The study involved a review of 177 policy and technical documents and interviews with 20 key informants in Ontario, as well as Canada's other provinces and territories. Results showed that the capacity to document Aboriginal peoples' health and service utilization varies significantly, depending on existing provincial/territorial health data sets and the ability to cross-link health data using unique identifiers. Some jurisdictions can locate Aboriginal data using health cards, health benefits payment information, or vital statistics identifiers; others rely on linkages using federal or provincial Aboriginal registry and membership lists. All have the capability to conduct geographical analyses to identify health and service utilization for communities or regions that have significant Aboriginal populations. To improve health information in Ontario, Aboriginal people's collective entitlements to information about their communities must be recognized. The authors outline implications of a set of principles that Canada's First Nations have adopted, commonly referred to as OCAP (Ownership, Control, Access, and Possession), on the collection, storage, use, and interpretation of health data. Only through negotiation with Aboriginal peoples can health information systems be established that meet their needs, as well as those of decision-makers and care providers.