Online Research, Ethics, Privacy
& Security
Nursing 708 Seminar
Winter Term 2010 – Dr. Ruta Valaitis
By Michael J. Wilson
March, 25, 2010
Agenda for Seminar
1. Quizz
2. Powerpoint Presentation
3. Discussion of Eysenbach et al Article
4. Case Scenarios
5. Questions and Discussions
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
Main Points – Chart Review
Tutorial
1. Keeping PHI secure
2. Health Information Custodians
3. Privacy Law – PHIPA
4. Research Ethics Boards
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
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
Dimensions of eResearch
1. Privacy
2. Confidentiality vs. Anonymity
3. Security of Personal Health Information
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
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?
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
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".
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
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.
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
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.
Eysenbach Article on Qualitative
Online Research


Classic article on
internet research
and informed
consent
Should be
referenced in the
new Second Edition
TCPS
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
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
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?
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)
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?
Discussion and Questions
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