ethics in infodemiology and public health 2.0

Gunther Eysenbach MD MPH

Gunther Eysenbach MD MPH

ProfessorInstitute for Health Policy, Management andEvaluation, University of Toronto;

Senior Scientist,Centre for Global eHealth Innovation,

Editor-in-chief, Journal of Medical Internet ResearchPublisher, JMIR PublicationsProducer, Medicine 2.0 Conference Series

Co-Director, Communication & Knowledge Translation, TechnaInstitute

Toronto General Hospital, Canada

Visiting Professor,Faculty of Behavioural SciencesUniversity of Twente, The Netherlands

Ethics in Infodemiology and Public Health 2.0

@eysenbach@eysenbach

Presented at#Epicrowd2015Recife, Brazil26 Mar 2015http://www.slideshare.net/eysen

www.jmir.org

JMIR has published >50 infodemiology studieshttp://www.jmir.org/themes/69

www.jmir.org

publichealth.jmir.org

An early paper on “infodemiology”: Internet searches correlate with Flu

Eysenbach, 2006

Eysenbach, Am J Prev Med 2011

Eysenbach, Am J Prev Med 2011

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

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

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

What about industry research?

Industry research committee

• Independent from researcher

• Preferably before research starts

• Not just rubberstamping but giving meaningful feedback

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 wrongdoingFB study pushed all the wrong buttons:

– “Alter emotional states”

– “Secret experiment” (no disclosure/informed consent)

– “Funded by the military”

– Privacy concerns

N=1006, US population, poll conducted by JMIR Publications with Google Consumer Surveys

68% say FB should inform users and enable opt-out

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

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

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 out9% didn’t know5% agree if it’s for public health5% agree if it’s for government4% agree if it’s for companies

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.

Eysenbach & Till, BMJ 2001

Eysenbach & Till, BMJ 2001

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

Conway MEthical Issues in Using Twitter for Public Health Surveillance and Research: Developing a

Taxonomy of Ethical Concepts From the Research LiteratureJ Med Internet Res 2014;16(12):e290

URL: http://www.jmir.org/2014/12/e290DOI: 10.2196/jmir.3617

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 ConsentOpt-out

Implicit Informed ConsentNo Opt-out

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)

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

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

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

Gunther Eysenbach MD MPH

Gunther Eysenbach MD MPH

@eysenbach@eysenbach

geysenba@gmail.com