Creating Clinical Cohorts: Challenges Encountered in Two Canadian Provinces

In 2013, the Living with HIV (LHIV) Innovation team established clinical cohorts of people living with HIV in Manitoba and Newfoundland and Labrador, and they linked the data to provincial health administrative databases. Access to these data enabled researchers to conduct studies across provincial borders; contribute to a national dialogue on HIV health system performance; and give recommendations for evidence-based healthcare, health policy and public health. However, research funding is episodic; maintaining cohorts requires stable funding. We support the establishment of a cross-jurisdictional approach to facilitate streamlined data collection and linkage without interruption and to allow for meaningful analysis in order to inform national policies.