1. Hidden Surveillance by Consumer Health Information Websites Jacquelyn Burkell and Alexandre Fortier Faculty of Information and Media Studies University of Western Ontario

2. Burkell and Fortier Most Canadians consider health information to be extremely sensitive. It is inappropriate for this type of information to be used in online behavioural advertising. Interim Privacy Commissioner Chantal Bernier, Jan 15 2014

3. Burkell and Fortier How common are trackers on consumer health websites?

4. Burkell and Fortier Is there less tracking on sites recommended by information professionals?

5. Burkell and Fortier Is there effective disclosure of behavioural tracking practices in privacy policies?

6. Burkell and Fortier Consumer Health Info Sites 83 Recommended – Consumer and Patient Health Information Section of the American Medical Library Association – Consumer Health Information Providers Interest Group of the Canadian Health Libraries Association 81 Google –Results from the first two pages of Google searches of the 10 most commonly searched conditions and not among the recommended sites

7. Burkell and Fortier Types of Trackers Analytics – Feedback to the site itself – Used by site to improve delivery Advertising – Third party advertisers – Assemble user profile across sites for ad targeting

8. Burkell and Fortier Finding the Trackers Cookies Ghostery (web beacons) Charles (web traffic monitor)

9. Burkell and Fortier How common are trackers on consumer health websites?

10. Burkell and Fortier 87% of sites have trackers On average from 10 different domains 51% have trackers from 3 rd party advertisers On average from 2 different domains

11. Burkell and Fortier Is there less tracking on sites recommended by information professionals?

12. Burkell and Fortier Trackers

13. Burkell and Fortier 3 rd Party Trackers

14. Burkell and Fortier Are some kinds of sites better than others?

15. Burkell and Fortier Types of Sites

16. Burkell and Fortier Trackers

17. Burkell and Fortier 3 rd Party Trackers

18. Burkell and Fortier 3 rd Party Trackers

19. Burkell and Fortier The Bottom Line Most consumer health information sites have trackers About half have tracking from 3 rd party advertisers – Commercial sites most commonly – Government sites least commonly

20. Burkell and Fortier The Bottom Line Recommended sites have less tracking – But only because information professionals are more likely to recommend government sites – Commercial sites that are recommended are no better than those returned on Google with respect to tracking, not-for-profit sites are actually worse

21. Burkell and Fortier Most Canadians consider health information to be extremely sensitive. It is inappropriate for this type of information to be used in online behavioural advertising. Interim Privacy Commissioner Chantal Bernier, Jan 15 2014

22. Burkell and Fortier The Response Regulatory control of behavioural tracking measures Digital literacy initiatives – Increased knowledge of behavioural tracking mechanisms and consequences – Public and professional education on strategies to identify and limit behavioural tracking

23. Burkell and Fortier 2014 The opinions expressed in this presentation are those of the authors and do not necessarily reflect those of the Office of the Privacy Commissioner of Canada. Thanks to:

24. Burkell and Fortier 2014 Jburkell.c a