Online Research, Ethics, Privacy & Security

1. Online Research, Ethics, Privacy & Security Nursing 708 Seminar Winter Term 2010 – Dr. Ruta Valaitis By Michael J. Wilson March, 25, 2010

2. Agenda for Seminar 1. Quizz 2. Powerpoint Presentation 3. Discussion of Eysenbach et al Article 4. Case Scenarios 5. Questions and Discussions

3. Quizz Developed by Dr. Karen Szala-Meneok, Senior Ethics Advisor, McMaster University and Dr. Laura-Lee Balkwill, Policy Analyst, Interagency Panel on Research Ethics Presented at Canadian Association of Research Ethics Boards (CAREB) Ontario workshop, November, 2009

6. Main Points – Chart Review Tutorial 1. Keeping PHI secure 2. Health Information Custodians 3. Privacy Law – PHIPA 4. Research Ethics Boards

7. What is eResearch? What is research? “...an undertaking intended to extend knowledge through a disciplined inquiry or systematic investigation.” (TCPS) Online research / Cyber research / web-based research Focus groups, discussion groups, mailing lists, chat rooms, virtual worlds, web-based surveys, blogs, wikis, social media, facebook, youtube, texting, Messaging, webcams

8. Internet Research – Kitchin 2007 1. Web-based (Engaged) i.e. chat rooms, facebook 2. Web-based (Non-intrusive) i.e. websites, news blogs, 3. Online Research i.e. questionnaires, surveys, experiments

9. Dimensions of eResearch 1. Privacy 2. Confidentiality vs. Anonymity 3. Security of Personal Health Information

10. Privacy 1. Privacy Laws: OHIPPA, PIPEDA, PHIPA, Canadian Standards Act principles 2. Research Ethics The Tri-Council Policy Statement CIHR Best Practices for Protecting Privacy in Health Research – 2005 3. Privacy Commissioners 4. Privacy Impact Assessments

11. Confidentiality vs. Anonymity 1. Anonymous online survey? 2. Confidential focus group? 3. Anonymous data collection? 4. Confidential interview with a political activist? 4. Linking anonymous PHI between databases?

12. Security of Online Research Data 1. SSL – the “s” in “https://” 2. Peer-to-peer networks and insecure documents containing PHI 3. 90 servers at McMaster University 4. Keylogger software, data sniffers, hackers 5. Data in transition vs. data at rest 6. US Patriot Act 7. Encryption of data – mobile devices

13. The Tri-Council Policy Statement (TCPS) 2nd Edition • 1998 edition said nothing about Internet research • Current draft- 8 references to the word "internet" and related words like "chatrooms", "Cybermaterial", "encryption", "virtual settings", "digital sites", "electronic data", "mobile device" and "data security".

14. TCPS – Internet Research Research that is non-intrusive, does not involve direct interaction between the researcher and individuals through the Internet medium, is not required to obtain REB review. Cyber-material such as documents, records, performances, online archival materials or published third-party interviews to which the public is given uncontrolled access on the Internet for which there is no expectation of privacy is considered to be publicly available information

15. TCPS – Internet Research There are, however, publicly accessible digital sites where there is a reasonable expectation of privacy.When accessing identifiable information in publicly accessible digital sites, such as Internet chatrooms, and self-help groups with restricted membership, the privacy expectation of contributors of these sites is much higher. Researchers shall submit their proposal for REB review.

16. TCPS – Qualitative Observational Internet Research Some activities carried on in public places may be intended to involve a particular community of interest and may be based on a limited presumption of privacy. For example, individuals involved in religious services or practices, or chat rooms on the internet, may assume that participants and observers will accord the proceedings some degree of respect. Data collection for research purposes through observation of such acts or behaviours occurring in public places are subject to research ethics review and Article 10.3 of this Policy

17. TCPS – Data Security Research data sent over the Internet may require encryption or use of special denominalization software to prevent interception by unauthorized persons or other risks to data security. In general, identifiable data obtained through research that is kept on a computer and connected to the Internet should be encrypted.

18. Eysenbach Article on Qualitative Online Research • Classic article on internet research and informed consent • Should be referenced in the new Second Edition TCPS

19. Case Scenarios 1. Multiple Sclerosis patients reactions to the “Liberation Treatment” on Twitter and Facebook 2. A Local School Board Online Focus Group on Adolescent Experiences of Cyberbullying

21. CCSVI In two recent articles, Zamboni et al.(J Neurol Neurosurg Psychiatry 2009; 80:392-399) (J Vasc Surg 2009; 50:1348-58) propose that impaired venous drainage from the brain and spinal cord, termed by the authors ‘chronic cerebrospinal venous insufficiency’ (CCSVI), is the primary cause of MS and that percutaneous transluminal opening of the veins is a potential treatment option for this disease. These preliminary results raise the possibility that CCSVI may be involved in the pathogenesis of MS and suggest that further investigation of this concept is warranted. http://www.youtube.com/watch?v=tV14jnVWhBc

22. Case I A nursing graduate students wants to do a qualitative study on multiple sclerosis patients who enroll in clinical trials for their condition. She wants to observe and interact with participants in the Facebook and Twitter forums for the upcoming CCSVI Web Streaming Event. Questions: 1. Does she need to consult with REB for clearance? 2. Does she need to obtain informed consent from participants, and if so, how? 3. Other questions?

23. What is Cyber Bullying?http://www.cyberbullyhelp.com/ Cyber bullying, also known as electronic bullying or online social cruelty, is defined as bullying: through email through instant messaging in a chat room on a website or gaming site through digital messages or images sent to a cellular phone Although sharing certain features in common with traditional bullying, cyber bullying represents a unique phenomenon that has only recently begun to receive attention in both the popular press and in academic circles. Cyber bullying not only looks and feels a bit different than traditional bullying, but presents some unique challenges in dealing with it. (Kowalski, Limber and Agatston, 2007)

24. Case II The local school board has teamed with a university to conduct an online focus group of adolescents who have experienced cyberbullying as reported to the school principal and nurse. The team is composed of clinical psychologists, research educators, and IT consultants. The purpose of the focus group is to develop and test the face validity of a questionnaire on depression caused by cyberbullying. Questions: 1. Do the adolescents need consent from their parents? 2. Should participants be given the choice to participate anonymously in the focus group? 3. Other questions?

25. Discussion and Questions ???????????????