impact of social media in research: human subjects & researchers march 24, 2015 lauren solberg,...
TRANSCRIPT
Impact of Social Media in Research: Human Subjects & Researchers
March 24, 2015
Lauren Solberg, JD, MTSAssistant Professor
Program in Bioethics, Law & Medical ProfessionalismDepartment of Community Health and Family Medicine
University of Florida College of Medicine
Disclosures
All views expressed are my own and not those of the University of Florida.
I have no financial interests to disclose.
Session Overview
Describe ways in which research teams use social media to conduct their research
Differentiate among these uses through examples of real research studies
Discuss ethical and regulatory issues associated with the use of social media to conduct research
Some Statistics
Facebook: 1.39 billion monthly active users, 890 million active daily users
Instagram: 300 million monthly active users, more than 75 million daily users
Twitter: 288 million monthly active users, 500 million tweets per day
PatientsLikeMe: 300,000 members, more than 2,300 conditions represented
Inspire: >500,000 members, >100 national patient organization partnerships
Internet Users
Social Media Users
Why People Use Social Media
Typically…
Connect with friends, new and old
Show support for an interest group
Network with business connections
Share photos
Get news updates
Other Uses for Social Media
Especially with health-related sites…
Share information about diseases/conditions
Get new information about diseases/conditions
Show (and get) support from communities
Generate research ideas/studies
Help Us Help You!
“[P]atients like you have the opportunity to share both personal stories and health data about your conditions to help uncover great ideas and new knowledge.”
**Use of star system to reward disclosure
http://www.patientslikeme.com/help/faq/Corporate
See Janssens ACJW, Kraft P. Research conducted using data obtained through online communities: ethical implications of methodological limitations. PLoS Med. 2012; 9(10):e1001328.
“All the SCAD Ladies Put Your Hands Up!”
Tweet, M. S., Gulati, R., Aase, L. A., & Hayes, S. N. (2011, September). Spontaneous coronary artery dissection: a disease-specific, social networking community-initiated study. In Mayo Clinic Proceedings (Vol. 86, No. 9, pp. 845-850). Elsevier.
“Electronically-collected patient-reported outcomes (PROs) research is arguably one of the promising areas for future growth in clinical research.”
Park, K. T., Harris, M., Khavari, N., & Khosla, C. (2014). Rationale for Using Social Media to Collect Patient-Reported Outcomes in Patients with Celiac Disease. Journal of gastrointestinal & digestive system, 4(1).
“Even if you don’t care about dating,”...“it’s a really nice laboratory for looking at human interactions generally.”
- Stanford University political economist, in Boston Globe article about use of OKCupid (and other dating sites) for academic research purposes
Courtney Humphries, Data Mining the Heart, THE BOSTON GLOBE, Aug. 22, 2010.
Not Everyone Agrees
Survey of Johns Hopkins School of Public Health faculty about their social media use
181 respondents (20% response rate)– 54% reported having used YouTube– 46% reported having used Facebook– 2/3 agreed social media is important for
information dissemination– But only 30% said social media is useful for
their researchKeller, B., Labrique, A., Jain, K. M., Pekosz, A., & Levine, O. (2014). Mind the gap: social media engagement by public health researchers. Journal of medical Internet research, 16(1).
Some Limitations of Data Collection Using Social MediaSelection bias– “Study population does not represent the target or
sampling population”– Some people don’t use Internet, social media
Information bias– “Any systematic error in the collection of data”– Self-report may be unreliableJanssens ACJW, Kraft P. Research conducted using data obtained through online communities: ethical implications of methodological limitations. PLoS Med. 2012; 9(10):e1001328.
Redundancy– Some social media users use more than one site– Information m/b posted in more than one place
Reliability of Information on Social Media
Concern that online persona differs from actual– Online presence can be constructed carefully, over time– Common complaint about dating sites!
Research shows perceptions of people are similar, whether based on real-world interactions or exposure to their social media presence
Weisbuch, M., Ivcevic, Z., & Ambady, N. (2009). On being liked on the web and in the "real world": Consistency in first impressions across personal webpages and spontaneous behavior. Journal of Experimental Social Psychology, 45, 573-576.
Also shows people show true personality on social media, not idealized version of themselves
Back MD, et al.: Facebook profiles reflect actual personality, not self-idealization. Psychol Sci 2011, 21(3):372-374.)
Different from other self-report methods?
Uses of Social Media in Research
Some common uses:
Recruitment
Delivery of interventions/interactions
Observation of users
Data Mining
Follow-up on participants
Recruitment
Recruiting in Pregnancy Clinical Trials
Social media recruitment done as second phase of recruitment (after more traditional methods implemented) for study about folic acid intake
Ads on sponsor web site, Craigslist, discussion forums, ads posted on FB and Twitter (mostly on women’s health, pregnancy pages)
Rate of recruitment increased 12-fold when social media combined with traditional methods
The role of social media in recruiting for clinical trials in pregnancy. Shere M, Zhao XY, Koren G.PLoS One. 2014 Mar 26;9(3):e92744.
FB Ads for Health-Related Survey
FB ads placed to recruit females, ages 16-25, in Victoria, Australia to study
Ads appeared for approx. 4 months, users clicked and directed to site with more info about study
Ads displayed more than 36 million times (to 450,000+ FB users), 8339 clicks (7940 unique users) on the ad, 551 indicated interest in the study– 278 completed survey (3.5% of those who clicked on
ad)– Cost – approx. 67 cents per click
Fenner, Y., Garland, S. M., Moore, E. E., Jayasinghe, Y., Fletcher, A., Tabrizi, S. N., ... & Wark, J. D. (2012). Web-based recruiting for health research using a social networking site: an exploratory study. Journal of Medical Internet Research, 14(1), e20.
HPV Vaccine StudySame recruitment methodology as Australia study– 18-30 year olds, speak English, live in Twin Cities
Metropolitan Area– Survey about HPV vaccination
2079 people visited study web site by clicking on ad, 1003 completed survey
Nelson, E. J., Hughes, J., Oakes, J. M., Pankow, J. S., & Kulasingam, S. L. (2014). Estimation of geographic variation in human papillomavirus vaccine uptake in men and women: An online survey using facebook recruitment. Journal of medical Internet research, 16(9).
FB Ads to Achieve FDA Compliance
2 UAB studies:– Cardiac arrest study: comparing 2 methods of delivering
chest compressions
FB ads targeted people >40 w/i 50 miles of B’ham, AL (where EMS would be comparing 2 methods)
– Major trauma trial: comparing 2 methods of fluid resuscitation in people experiencing hemorrhagic shock
FB ads targeted people ages 15-44 w/i 50 miles of B’ham, AL (where EMS would be comparing 2 methods)
Randomized studies where subjects could opt out (goal: to comply with FDA exceptions for IC)
FB Ads, FDA (cont’d)Over 5.1 million displays of cardiac study ad in approx. 1 month on display– 437 clicks to go to study site (75% new visitors)
Mostly female, ages 40-54
Over 10.4 million displays of trauma study ad in approx. 3 months– 743 clicks to go to study site (66% new visitors)
Mostly female, ages 40-54
Cost approx. $1000 per study, low opt-out rate (only 1, in cardiac study)
Stephens, S. W., Williams, C., Gray, R., Kerby, J. D., & Wang, H. E. (2013). Preliminary experience with social media for community consultation and public disclosure in exception from informed consent trials. Circulation, 128(3), 267-270.
Ethical Considerations re: Recruitment
Found Through Facebook
Interviews w/ 132 young adults about alcohol/substance use, mental health
Participants identified through Facebook– 416 pages evaluated – eligibility = age 18-19, evidence of
FB use in past 30 days, c/b contacted via phone/email in university directory or on FB page
As part of interview, participants asked how they felt about having been identified by Facebook page– Strongly like: 19.7%; Somewhat like: 36.4%, Neutral:
28.8%, Somewhat dislike: 9.1%, Strongly dislike: 6.1%
Moreno, M. A., Grant, A., Kacvinsky, L., Moreno, P., & Fleming, M. (2012). Older adolescents' views regarding participation in Facebook research. Journal of Adolescent Health, 51(5), 439-444.
Found Through FB Considerations
If FB profiles visible, all is fair
OK as long as no “bad” intentions
All in strongly dislike and most in somewhat dislike category expressed concerns about privacy – Used terms like “weird”, “creepy”, “scary”
Confusion about privacy settings, what their own privacy settings were
Moreno, M. A., Grant, A., Kacvinsky, L., Moreno, P., & Fleming, M. (2012). Older adolescents' views regarding participation in Facebook research. Journal of Adolescent Health, 51(5), 439-444.
Considerations re: Social Media Ads
Information is likely transmitted back to social media site (e.g. FB) when people click on recruitment ads– Appropriate for FB or other companies to have
information about prospective participants?
Will study sponsor allow it?
Could it be considered advertising? – 2014 Draft FDA Guidance about advertising
online in character limited settings, other draft guidance
http://meetinglibrary.asco.org/content/11400101-144#EdBookAM201434e101-table1
UAB FB Ads
Not everyone in community is social media user, so other means of outreach may be necessary– Are you really engaging the community when
there are known demographics who are not using social media?
Face to face sessions (like town hall meetings) allow for conversation, FB ads do not– Do FB users understand the information
presented?
Ad on FB pageIs someone managing this ad in case a potential participant posts a comment?
Some people will “like” this post – is that ok?
Delivery of Interventions
A Facebook Intervention For STI Prevention – Just/Us
Study conducted through CO School of Public Health
2 FB study pages – intervention, control
Control page – news/info unrelated to sexual health
Intervention page – 8 weeks, 8 topics, with videos/quizzes/games/discussions (w/ pre and post assessments at 2 mos., 6 mos.)
Just/Us (cont’d)
Participants instructed to “Like” page for assigned group
Study showed “social media can be used to facilitate prevention of declines in condom use among high-risk youth in short term”
Good short term retention, less retention in longer term
Bull SS, Levine DL, Black SR, Schmiege S, Santelli J. Social media-delivered sexual health intervention: a cluster randomized controlled trial. Am J Prev Med 2012; 43(5): 467-474.
http://clinicaltrials.gov/ct2/show/NCT00725959?term=NCT00725959&rank=1
FITNET Study at UNCFor young adult cancer survivors, comparing FB-based intervention to increase physical activity with FB self-help comparison group– Comparison group had similar, but fewer activities
(e.g. no web site w/ diary to record steps, activity type)
Each cohort had its own FB group where info about physical activity was posted, including links and other resources– “Experimental” group had additional password-
protected study web site with additional tools
FITNET – Additional Info
FB group for comparison group included unmoderated discussion
For experimental group, study coordinator posted prompts on wall like links, discussion questions, reminders, and answered questions posted by participants
Number of FB wall posts collected during study
77% of participants completed study
Valle, C. G., Tate, D. F., Mayer, D. K., Allicock, M., & Cai, J. (2013). A randomized trial of a Facebook-based physical activity intervention for young adult cancer survivors. Journal of Cancer Survivorship, 7(3), 355-368.
Facebook and Emotional Contagion
Newsfeed of almost 700,000 users manipulated over course of a week– Some saw more positive posts, some saw more
negative
Studied whether seeing more positive or negative content led to more positive or negative postings
More than 3 million posts analyzed, found people who viewed positive content were more positive, who viewed negative content were more negative
Kramer, A. D., Guillory, J. E., & Hancock, J. T. (2014). Experimental evidence of massive-scale emotional contagion through social networks. Proceedings of the National Academy of Sciences, 111(24), 8788-8790.
Ethical Considerations re: Delivery of Interventions
General Considerations
How generalizable are the results if eligibility criteria includes use of Internet/social media?
Security concerns
Just/Us – Ethical Considerations
Consent sought from all participants
Willingness to “Like” page was part of inclusion criteria
FB friends may know when a user “Likes” a page– Controlled through Privacy settings– Are participants ok with friends knowing they
liked this type of page?– Important to note this in consent process
FITNET – Ethical Considerations
FB groups were “private” – by invitation, not searchable on FB, information posted in groups only viewable to group members
Participants can see each other’s posts on group FB wall– > ½ of participants never posted or posted only 1 time
Coordinator communicating with participants in view of other participants, on FB server
Satisfaction rates were high, both groups increased their physical activity
Facebook Emotional Contagion Concerns
No consent obtained specifically for this study– Consent presumed based on acceptance of FB Terms
of Use
FB worked with researchers from Cornell– No IRB approval from Cornell– IRB said not HSR because Cornell only involved in
designing study and writing paper
PNAS published correction– Concern practices “not fully consistent with the
principles of obtaining informed consent and allowing participants to opt out”
Are terms of use sufficient for research consent?
Observation
Patient Registry +Univ. of Chicago monogenic diabetes registry study– Neonatal Diabetes Registry & Maturity Onset
Diabetes of the Young Registry
Included private Facebook discussion group for Neonatal Diabetes Registry participants
46% of NDR registry participants or parent representatives joined FB group
Greeley SAW, Naylor RN, Cook LS, et al., Creation of the Web-Based University of Chicago Monogenic Diabetes Registry: Using Technology to Facilitate Longitudinal Study of Rare Subtypes of Diabetes, J. Diabetes Sci Technol. 2011 July 5(4) 879-886.
https://registration.monogenicdiabetes.uchicago.edu/registry/neonatal-registry/discussion-group
Ethical Considerations re: Observation
Registry Study – Ethical Issues To Consider
Separate consent form for web-based discussion– http://www.kovlerdiabetescenter.org/assets/documents/Registry%20Consent%20Forms/BNDMRDiscussionGroupC
onsentRev072809.pdf
Privacy:– FB group only open to registry participants– Participants need not post, can read only– Posts may be linked by researchers to study information– Reminder that posts will be read by other participants– Researchers may quote post in publication, but steps will be
taken to try to protect confidentiality
Reminder to consult physician before making any changes to medical care/treatment
Feedback about discussion groups – very positive!
Participant Follow-Up
Longitudinal Study of Drug Users1999-2001, initial interviews conducted
2001-2004, follow-up interviews conducted
2009-2011 – 2nd set of f/u interviews, some participants located through Facebook
48/551 participants contacted through FB– 11/48 completed final interview– 2 others responded to contact but did not
complete final interviewBolanos F, Herbeck D, Christou D, Lovinger K, Pham A, Raihan A, Rodriguez L, Sheaff P, & Brecht M-L. (2012). Using facebook to maximize follow-up response rates in a longitudinal study of adults who use methamphetamine. Substance Abuse: Research and Treatment, 6: 1-11.
Longitudinal Literacy Study
Intervention promoting literacy, attempting to prevent developmental delay in children in at-risk families
Follow-up visits with children to take place several years after study enrollment and intervention
Reported 61.7% retention rate in study
Would have been 45.8% if they had not used Facebook to locate participants– If only had used phone, snail mail, email
Mychasiuk, R., & Benzies, K. (2012). Facebook: an effective tool for participant retention in longitudinal research. Child: care, health and development, 38(5), 753-756.
Puff City StudyOnline asthma education/management program– RCT comparing tailored online program to generic web
resources
422 subjects enrolled; 125 overdue for 12-month f/u survey and considered “unable to contact”
4 retention strategies for “unable to contact” group:– Reminder letter via snail mail– Redialing defunct phone # on weekly basis***– FB outreach (research staff initiated friend request)– Assistance from school administration
51 attempts to contact via FB, 47.1% success rate in recontacting participants
Ezell, J. M., Saltzgaber, J., Peterson, E., & Joseph, C. L. (2013). Reconnecting with urban youth enrolled in a randomized controlled trial and overdue for a 12-month follow-up survey. Clinical Trials, 1740774513498320.
Ethical Considerations re: Participant Follow-Up
Participant Follow-Up – Ethical Issues
Is the researcher contacting the right person?
What is the proper way to make contact with the participant?– Who might see the communication?– Is private message a possibility?– Is “friending” a participant appropriate?
What to say (especially if the researcher is unsure if it is the correct person)?
From Our Examples
Meth study received IRB approval for message content, limited the number of contacts made through FB, only contacted those whose identity they could verify
Asthma study did not limit number of times re-contact initiated, participants tracked for average of 98 days– FB not most successful method
But if effort is minimal to use this method and it makes results more complete, isn’t this better for research?
Data Mining
Data Mining Defined
“Data processing using sophisticated data search capabilities and statistical algorithms to discover patterns and correlations in large preexisting databases; a way to discover new meaning in data”
From WordNet: http://wordnetweb.princeton.edu/perl/webwn
Tastes, Ties, and Time
2008 – Harvard researchers made Facebook data set available to other investigators– “[M]achine-readable files of virtually all the
information posted on approximately 1,700 FB profiles by an entire cohort of students at an anonymous, northeastern American university”
– Data set started with information posted on students’ pages during first year of college
– Plans to update information from subsequent 3 years
Kevin Lewis et al, Tastes, Ties, and Time: A New Social Network Dataset Using Facebook.com, 30 SOC. NETWORKS 330 (2008).
Data Mining on PatientsLikeMe
Study comparing physicians’ perceptions of efficacy of treatments for ALS symptoms to patients’ perceptions
Responses to 2003 national survey compared to information posted on ALS patient PatientsLikeMe profiles– Site asks patients to track their symptoms
Nakamura C, Bromberg M, Bhargava S, Wicks P, Zeng-Treitler Q. Mining Online Social Network Data for Biomedical Research: A Comparison of Clinicians’ and Patients’ Perceptions About Amyotrophic Lateral Sclerosis Treatments. J Med Internet Res 2012; 14(3):e90.
Mining for Adverse Drug ReactionsResearchers mined social networking sites to find mentions of drug interactions, adverse drug reactions – Goal: identify problems more quickly than traditional
reports from drs, patients to FDA have allowed
Collected social media data about 46 drugs with FDA drug alerts for adverse drug events from 1/12-9/12 – Used Twitter and “search query data”
In some cases, were able to predict potential adverse events more than 2.5 years before FDA alert issued (ex: Lipitor)
Adjeroh, D., Beal, R., Abbasi, A., Zheng, W., Abate, M., and Ross, A. "Signal Fusion for Social Media Analysis of Adverse Drug Events," IEEE Intelligent Systems, 29(2), 2014, pp. 74-80.
Another Emotional Contagion Study
Researchers looked at how rainfall affects emotional expression on Facebook posts, and resulting changes in users’ friends posts– Goal: examine impact of emotional expression on
others in social network
Data collected over 3 years
Positive posts decreased negative posts by friends, negative posts decreased number of friends’ positive posts
Published shortly before Cornell studyCoviello, L., Sohn, Y., Kramer, A. D., Marlow, C., Franceschetti, M., Christakis, N. A., & Fowler, J. H. (2014). Detecting emotional contagion in massive social networks. PloS one, 9(3), e90315.
Ethical Issues re: Data Mining
Data Mining In General
Often done without consent of those whose posted information is mined– If done without consent, is there a violation of
site users’ expectations of privacy?– Does it matter that most information is posted
without restrictions (e.g. “public” posts)?
Is this an invasion of privacy?
Expectations of privacy may not be reasonable, but still are ethical obligations to not misuse information
Harvard Data Set ProblemsInformation collected without consent of students– Instead, by research assistants w/ prior access
Researchers claimed data de-identified, claim weak– University easily identifiable b/c:
Size, general location of institution known
Unique names of majors were included in data set
Some student housing info provided by school
Then could identify individual students– Home states included – Demographic info included
Data set no longer available to other researchersSee Michael Zimmer, But the Data is Already Public, 12 ETHICS & INF. TECH. 313 (2010); “Harvard Researchers Accused of Breaching Students’ Privacy,” Chronicle of Higher Education (July 10, 2011).
FB Emotional ContagionStudy approved by UCSD IRB– Participant consent waived
“Researchers” did not view FB users’ names or words posted
“[A]ll analysis of identified data took place in the same secure location on servers where Facebook currently keeps users’ data.” – FB employees included as article authors
*How does this compare to controversial PNAS emotional contagion study?
Is Data Mining HSR?
Isn’t this just collection of public information?
If HSR, IRB review is required (or designation of exemption required)
If not HSR, out of IRB’s purview
Research that is not HSR should still be conducted ethically
But many reasons IRB should refrain from acting outside its purview
Financial resource limitations
Human resource limitations
Delays in research
What is a Human Subject?
“A living individual about whom an investigator (whether professional or student) conducting research obtains
(1) Data through intervention or interaction with the individual, or
(2) Identifiable private information.”
45 C.F.R. 46 §46.102(f)
Intervention & Interaction“Intervention includes both physical procedures by which data are gathered (for example, venipuncture) and manipulations of the subject or the subject's environment that are performed for research purposes.” (45 C.F.R. 46.102(f))
“Interaction includes communication or interpersonal contact between investigator and subject.” (45 C.F.R. 46.102(f))
What Does This Mean?
CommunicationImparting/exchanging of information (Oxford American Dictionary)
Expression/exchange of information by speech, writing, gestures (Black’s Law Dictionary)
Interpersonal ContactMeeting, communication, relationship with
someone (Oxford American Dictionary)
BetweenConnection or relationship involving at least 2
parties (Oxford American Dictionary)
Data Mining on Social Media Unlikely Intervention/Interaction
Not intervening
Only a “one-sided transaction”Site users need not know their pages were viewed
Researcher makes no active contact with site usersNo active conveyance of information by site user in
response to researcher
**Consider: Does a researcher conducting a retrospective review of medical records for research purposes “interact” with the patient participants?
Private Information
“Includes information about behavior that occurs in a context in which an individual can reasonably expect that no observation or recording is taking place, and information which has been provided for specific purposes by an individual and which the individual can reasonably expect will not be made public (for example, a medical record).”
45 C.F.R. 46 §46.102(f)
Don’t Privacy Settings Make the Information Private?
Most social networking sites allow users to restrict who has access to information posted Account privacy settings can be managed Site itself is password protected
But password does not protect information from being viewed by others And on most sites, anyone over 13 can obtain username,
password
Privacy settings do not protect against re-disclosure of posted information
Purpose of social media is to share information
Courts have said no social media privilege
Common Themes Among All Research Online
Ethical (and regulatory) obligation to protect privacy of people whose information is collected for research purposes
Potential need to obtain informed consent to use people’s information, intervene in the online setting
Concerns about when IRB approval is necessary (e.g. PNAS study)
Researchers Owe Their Subjects “More”
“It is the responsibility of researchers to protect study participants from unintended harm resulting from the research.”
Flicker S, Haans D, Skinner H. Ethical dilemmas in research on Internet communities. Qualitative Health Research 2004; 14:124–34.
Are People Worried About Privacy?
2005-2009 – decline in amount of information FB users shared publicly– But overall information posted on FB increased– Corresponded to increased privacy settings– Conclusion: “privately” shared info increasedStutzman, F., Gross, R., and Acquisti, A. (2012). Silent Listeners: The Evolution of Privacy and Disclosure on Facebook. Journal of Privacy and Confidentiality 4 (2), 7-41.
But greater control over dissemination of “private” information decreases privacy concerns, increases willingness to disseminate that information– Even if it may be accessed/used later, posing risk to themBrandimarte, Laura, Alessandro Acquisti, and George Loewenstein. "Misplaced confidences privacy and the control paradox." Social Psychological and Personality Science 4.3 (2013): 340-347.
Privacy and Young AdultsStudy of college-age females, focus groups in 2009 and 2012, asking about privacy on social media
3 themes:– Facebook age limit of 13+ is appropriate because
of safety and other concerns– Information posted online should be filtered for
safety, to present positive image, to avoid oversharing (and being annoying as result)
– Lots of incorrect info about who can access social media info in spite of privacy settings
Moreno, M. A., Kelleher, E., Ameenuddin, N., & Rastogi, S. (2014). Young Adult Females' Views Regarding Online Privacy Protection at Two Time Points.Journal of Adolescent Health, 55(3), 347-351.
Public Behavior
Many argue the Internet is a “public” forum
Can there be a reasonable expectation of privacy while in public?
Are all aspects of public behavior, including identity of actor, public?
Exempt – Observation of Public Behavior
45 C.F.R. 46.101(b)(2) – observation of public behavior is exempt unless – Information obtained is recorded in way that
subjects can be identified directly or through identifiers; AND
– Disclosure of subjects' responses outside the research could reasonably place subjects at risk of criminal or civil liability or be damaging to subjects' financial standing, employability, or reputation.
Is Research Exempt or Not HSR?
If behavior occurs in public, can that individual have reasonable expectation that no observation/recording is taking place?– Is observation of public behavior ever human
subjects research at all? – In what context can someone be in public and
still maintain an expectation of privacy?
What Contexts Are Those?
Is there such a context anymore?
How many of you have an iPhone, Android, etc?– And have used it to take a photo/video?– Post the photo/video?
Where might someone reasonably expect no observation/recording is taking place?– What might a person do in public and
reasonably maintain expectation of privacy?
Consider the Following…
Behind closed doors in bedroom at home
In front of dining room window at home
Shopping mall
Department store dressing room
Football stadium
Football stadium bathroom
AA meeting
Internet
FB Policies“We conduct surveys and research, test features in development, and analyze the information we have to evaluate and improve products and services, develop new products or features, and conduct audits and troubleshooting activities.”
“We use the information we have to improve our advertising and measurement systems so we can show you relevant ads on and off our Services and measure the effectiveness and reach of ads and services.”
“Always think before you post. Just like anything else you post on the web or send in an email, information you share on Facebook can be copied or re-shared by anyone who can see it.”
But…
“We require applications to respect your privacy, and your agreement with that application will control how the application can use, store, and transfer that content and information.”
“We do not give your content or information to advertisers without your consent.”
“We work hard to protect your account using teams of engineers, automated systems, and advanced technology such as encryption and machine learning.”
PatientsLikeMe Policies“PatientsLikeMe uses Shared Data, Restricted Data, and Site Usage internally, as needed, for research, for maintenance and operation of the Site, and to create the best possible tools and functionality for patients.”
PatientsLikeMe provides Shared Data, in individual and aggregate format, to Partners and other third parties for use in scientific research and market research.
Some of the information that Members provide about themselves may be shared with the PatientsLikeMe community, Partners, and others . . .”
Where Does Consent Fit In?
Should consent be sought from individuals to collect information they posted?
Are a site’s terms of service sufficient to constitute consent?
What if the site isn’t involved in the research (like in UVA / WVU study)?
And what is the best way to obtain informed consent?
If research is not HSR, consent is strictly ethical, not regulatory, issue
Facebook & Consent“If you collect information from users, you will: obtain their consent, make it clear you (and not Facebook) are the one collecting their information, and post a privacy policy explaining what information you collect and how you will use it.”
https://www.facebook.com/legal/terms
PatientsLikeMe & Consent“You agree not to disclose to any person or entity personally identifiable information about other members that you encounter while using this Site (whether posted in the Member Area by a member or emailed to you by a member) without the express consent of such member. You may disclose information of a general nature (that could not identify the member who provided such information or whom such information is about) to third parties outside this Site, subject to the above restriction on non-commercial use.”http://www.patientslikeme.com/about/user_agreement
Ethical (and Practical) Implications of Obtaining Consent
Sometimes, getting consent is no problem– Especially the case if participants are recruited in-
person, if social media is used to deliver intervention, if participants make initial contact with research team
– But what if entire study is data mining? – Or if participants are located via social media site?
How do you contact the participant?
What are the risks of contacting the participant?
Value of some Internet research is “natural environment”
Mechanisms for Consent
Are these valid/useful/ethical?– Post message on user’s page/profile– Post message on researcher’s own page/profile
(social media or otherwise)– Email/call the user– Private message
Should consent be active or passive (opt in vs. opt out)?
How to ensure consent truly informed?– E-consent, FDA draft guidance Mar. 2015
Solberg, L. B. (2013). Complying with Facebook's Terms of Use in Academic Research: A Contractual and Ethical Perspective on Data Mining and Informed Consent. UMKC L. Rev., 82, 787.
From Michael Bernstein, professor of Comp. Sci. at Stanford U
“Hammering ethical protocols designed for laboratory studies onto internet experimentation is fundamentally misguided”
“If I expect Google’s search results to be changing under my feet every time I search, then you shouldn’t need informed consent to run a study that changes the search results”
https://medium.com/@msbernst/the-destructive-silence-of-social-computing-researchers-9155cdff659
A Side Effect of Social MediaFree flow of information on social media extends to research participants
Especially those who want to communicate with other study participants– Should I join the study? Withdraw from it?– Did I get the study drug or the placebo?
Shire created educational videos for participants about issues with sharing
Vertex added provision to ICF directing participants not to discuss study participation online
What are the ethical issues here?D.M. Amy. Too Much Information: Researchers Fret as Social Media Lift Veil on Drug Trials. Wall Street J. Jul. 30, 2014.
Conclusion
Social media can be used in positive ways in research
Research teams have ethical obligation to respect their study participants
Because of the vast amount of information social media provides – and the large number of people it reaches – research teams and institutions alike should work together so teams can incorporate this technology in their projects
Thank you!
Lauren Solberg
University of Florida
352-273-5142