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 …

Introduction International sharing of health data opens the door to the study of the so-called
'Big Data', which holds great promise for improving patient-centred care. Failure of recent …

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 …

Background There is good evidence of both community support for sharing public sector
administrative health data in the public interest and concern about data security, misuse and …

In this article we explore the role of data custodians in establishing and maintaining social
licence for the use of personal information in health research. Personal information from …

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 …

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 …

Background Register-based research can provide important and valuable contributions to
public health research, but involves ethical issues concerning the balance of public health …

Objectives: Recent legislative changes within the United Kingdom have stimulated
professional debate about access to patient data within research. However, there is currently …

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 …