Background: Little is known about Canadians' knowledge of and level of support for using
administrative and other large, routinely collected data for health research, despite the …

Objective Researchers are increasingly collecting large amounts of deidentified data about
individuals to address important health-related challenges and answer fundamental …

This paper has three parts. The first part describes developments in the use of personal
information for health research in Canada, challenges in responding to new data protection …

Objectives: This study sought to determine public opinion on alternatives to project-specific
consent for use of their personal information for health research. Design: The authors …

Background: Both the research literature and headline news stories indicate that the public
cares about how their health data are used. The objective of this study was to learn more …

Background We aimed to synthesise data on issues related to stakeholder perceptions of
consent for the use of secondary data. To better understand the current literature available …

Introduction Understanding the views of the public is essential if generally acceptable
policies are to be devised that balance research access to general practice patient records …

Purpose Biospecimen repositories and big data generated from clinical research are
critically important in advancing patient-centered healthcare. However, ethical …

Introduction: Variation across research ethics boards (REBs) in conditions placed on access
to medical records for research purposes raises concerns around negative impacts on …

This study, conducted in Newfoundland and Labrador, assessed the level of awareness,
perceptions and concerns of healthcare providers, health researchers, data managers and …