1.
Gunther
Eysenbach MD MPH
Gunther
Eysenbach MD MPH
Professor
Institute for Health Policy, Management and
Evaluation, University of Toronto;
Senior Scientist,
Centre for Global eHealth Innovation,
Editor-in-chief, Journal of Medical Internet Research
Publisher, JMIR Publications
Producer, Medicine 2.0 Conference Series
Co-Director, Communication & Knowledge Translation, Techna
Institute
Toronto General Hospital, Canada
Visiting Professor,
Faculty of Behavioural Sciences
University of Twente, The Netherlands
Ethics in Infodemiology and Public Health 2.0
@eysenbach@eysenbach
Presented at
#Epicrowd2015
Recife, Brazil
26 Mar 2015
http://www.slideshare.net/eysen

2.
www.jmir.org

3.
JMIR has published >50 infodemiology studies
http://www.jmir.org/themes/69

4.
www.jmir.org

5.
publichealth.jmir.org

6.
An early paper on “infodemiology”: Internet searches correlate with Flu
Eysenbach, 2006

7.
Eysenbach, Am J Prev Med 2011

8.
Eysenbach, Am J Prev Med 2011

9.
Chew & Eysenbach. PloS One 2010; 5(11)

10.
Clash of cultures
• Industry practice
– Users agree to Terms of Use giving widespread power
companies to do what they like with the data
– Users don’t read or understand TOS
– A/B testing (split-testing, mini-RCTs) routinely done
without users’ knowledge and consent
– Tradeoff: Providing data vs getting free services
• Research best practice
– Inform users
– Allow them to opt-out

11.
The dilemma for journal editors
Wealth of data in the hands of
private corporations
Best practice for research (informed
consent/optout) often cannot be met

12.
What about industry research?

13.
Industry research committee
• Independent from
researcher
• Preferably before research
starts
• Not just rubberstamping but
giving meaningful feedback

14.
Why do we need IRBs/Industry Ethics
Committees
• Harms vs benefit analysis
• Should be done by 3rd party, not researchers
themselves
• Perceived harm / sense of wrongdoing
FB study pushed all the wrong buttons:
– “Alter emotional states”
– “Secret experiment” (no disclosure/informed consent)
– “Funded by the military”
– Privacy concerns

15.
N=1006, US population,
poll conducted by JMIR Publications with Google Consumer Surveys
68% say FB should inform users and
enable opt-out

16.
Older people more likely to as for
informed consent and opt-out

17.
N=1002, US population,
poll conducted by JMIR Publications with Google Consumer Surveys
Even for randomized design and
functionality tests only 10% “don’t
mind” to be involved
24% want to opt out
10% don’t mind
14% were not aware

18.
N=1003, US population,
poll conducted by JMIR Publications with Google Consumer Surveys
Companies and gov monitor tweets to
gather intelligence
27% want to opt out
9% didn’t know
5% agree if it’s for public health
5% agree if it’s for government
4% agree if it’s for companies

19.
Perhaps it's like undressing in front of an open window
and then being outraged that someone watched, but that
sense of outrage is real. Perhaps it is also time to revisit
our ethical frameworks, which largely date to the
predigital age, in the light of recent developments in data
collection and storage on the Internet.
Michael W. Ross, PhD, MD, MPH, is a professor of
behavioral sciences at the Center for Health Promotion
and Prevention Research in the School of Public Health at
the University of Texas. He is also a member of the APA
Committee on Human Research.

20.
Eysenbach & Till, BMJ 2001

21.
Eysenbach & Till, BMJ 2001

22.
Conway. J Med Internet Res 2014
http://www.jmir.org/2014/12/e290

23.
Conway M
Ethical Issues in Using Twitter for Public Health Surveillance and Research: Developing a
Taxonomy of Ethical Concepts From the Research Literature
J Med Internet Res 2014;16(12):e290
URL: http://www.jmir.org/2014/12/e290

24.
Cyberstudies / Public Health 2.0
• Passive Monitoring of
tweets, social media and
aggregated data monitoring
• Qualitative research of
Internet communities
• Intervention studies such as
altering the newsfeed
• Participatory Surveillance
Traditional Health Research
• Passive Monitoring of EMR,
OTC drug sales, and
aggregated data monitoring
• Qualitative research of
consumer behavior
• Intervention studies such as
behavior change studies
• Surveys
Explicit Informed Consent
Opt-out
Implicit Informed Consent
No Opt-out

25.
Some crazy ideas (1/2)
• Should there be an established voluntary
standards for disclosure of experiments on
websites
– For example, companies such as FB should have a
standard URL such as facebook.com/research
disclosing current research (A/B/ testing) and
providing opt-out options
• Should responsible companies and researchers in
this field agree on a code of conduct, provide
notice and choice (opt-out infrastructure)

26.
http://www.networkadvertising.org/choices/

27.
Some questions (2/2)
• Should the research community define and
honor a standard controlled vocabulary
(hashtags) so users can indicate if their
tweets/status updates can/should be used for
aggregate analysis and research

28.
Conclusions
• Only because information is “public”, or for
honorable purposes such as public health,
consumers may have issues with large-scale data
analysis, esp. older people & for sensitive topics
• It takes only one poorly framed study to create a
media/consumer backlash
• Consumer education as well as new “industry
standards”, collaboration among researchers (role
of funders?), and technical tools (opt-
out/disclosure infrastructure) may be part of the
answer

29.
Gunther
Eysenbach MD MPH
Gunther
Eysenbach MD MPH
@eysenbach@eysenbach
geysenba@gmail.com