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Hidden Surveillance by Consumer Health Websites

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University of Western Ontario, Faculty of Information and Media Studies (FIMS)



Project Leader(s)

Jacquelyn Burkell, Associate Professor and Assistant Dean of Research (FIMS)
Alexandre Fortier, PhD student


Behavioural tracking presents a significant privacy risk to Canadians, particularly when their online behaviours reveal sensitive information that could be used to discriminate against them. This concern is particularly relevant in the context of online health information seeking, since searches can reveal details about health conditions and concerns that the individual may wish to keep private. The privacy threats are exacerbated because behavioural tracking mechanisms are largely invisible to users, and many are unaware of the strategies and mechanisms available to track online behaviour.

For this project, the researchers documented the behavioural tracking practices of consumer health websites, and examined the privacy policy disclosures of these same practices. The results of the research demonstrate that tracking on consumer health information websites is widespread; furthermore, sites recommended by information professional associations (Canadian Health Libraries Association and American Medical Library Association) are similar to sites returned in Google searches in terms of behavioural tracking, although they are less likely to have trackers from third-party advertisers. The research also demonstrated that privacy policy disclosure of tracking practices is limited and often uses a language that is difficult to interpret, making it difficult for users to assess tracking practices. Taken together, these results suggest that those who recommend consumer health websites and those who use these websites require strategies to identify and potentially block behavioural tracking measures.

The goal of the project was to raise awareness of behavioural tracking and risk mitigation strategies by communicating the results of the research, and information about the risks of and responses to behavioural tracking, to three different groups: the academic community, Library and Information Science professionals, and the general public. This communication was carried out using a variety of mechanisms, including presentations, publications, public lectures, and an educational video. In addition, the research team provided to librarians, including health librarians, who are an important group of professional information intermediaries, education regarding behavioural tracking and associated risks. Armed with this education, librarians who recommend consumer health websites, whether they are in hospital or public libraries, will be better able to select privacy-respecting information resources for their clients, and they will also be better prepared to assist consumers to protect their own privacy while searching for health information through information literacy initiatives that address behavioural tracking.

This document is available in the following language:

English only

OPC Funded Project

This project received funding support through the Office of the Privacy Commissioner of Canada’s Contributions Program. The opinions expressed in the summary and report(s) are those of the authors and do not necessarily reflect those of the Office of the Privacy Commissioner of Canada. Summaries have been provided by the project authors. Please note that the projects appear in their language of origin.

Contact Information

Western University
1151 Richmond Street
London, Ontario
N6A 3K7

Tel: 519-661-2111
Fax: 519-661-3506

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