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Impact of Social Media in Research: Human Subjects & Researchers Impact of Social Media in Research: Human Subjects & Researchers

Impact of Social Media in Research: Human Subjects & Researchers - PowerPoint Presentation

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Impact of Social Media in Research: Human Subjects & Researchers - PPT Presentation

March 24 2015 Lauren Solberg JD MTS Assistant Professor Program in Bioethics Law amp Medical Professionalism Department of Community Health and Family Medicine University of Florida College of Medicine ID: 738826

information social study research social information research study media data consent participants privacy amp facebook ethical site posted public

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Slide1

Impact of Social Media in Research: Human Subjects & Researchers

March 24, 2015

Lauren Solberg, JD, MTS

Assistant Professor

Program in Bioethics, Law & Medical

Professionalism

Department of Community Health and Family Medicine

University of Florida College of MedicineSlide2

DisclosuresAll views expressed are my own and not those of the University of Florida.I have no financial interests to disclose.Slide3

Session OverviewDescribe

ways in which research teams use social media to conduct their researchDifferentiate among these uses through examples of real research studies

Discuss ethical and regulatory issues associated with the use of social media to conduct researchSlide4

Some StatisticsFacebook: 1.39 billion

monthly active users, 890 million active daily usersInstagram: 300 million monthly active users, more than 75 million daily usersTwitter: 288 million monthly active users, 500 million tweets per dayPatientsLikeMe: 300,000 members, more than 2,300 conditions representedInspire: >500,000 members, >100 national patient organization partnershipsSlide5

Internet UsersSlide6

Social Media UsersSlide7

Why People Use Social MediaTypically…Connect with friends, new and old

Show support for an interest group Network with business connectionsShare photosGet news updatesSlide8

Other Uses for Social MediaEspecially with health-related sites…Share information about diseases/conditions

Get new information about diseases/conditionsShow (and get) support from communitiesGenerate research ideas/studiesSlide9

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/CorporateSee Janssens ACJW, Kraft P. Research conducted using data obtained through online communities: ethical implications of methodological limitations. PLoS Med. 2012; 9(10):e1001328. Slide10

“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.Slide11

“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).Slide12

“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.Slide13

Not Everyone Agrees Survey of Johns Hopkins School of Public Health faculty about their social media use181 respondents (20% response rate)54% reported having used YouTube

46% reported having used Facebook2/3 agreed social media is important for information disseminationBut 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).Slide14

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 mediaInformation 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.RedundancySome social media users use more than one siteInformation m/b posted in more than one placeSlide15

Reliability of Information on Social MediaConcern that online persona differs from actual

Online presence can be constructed carefully, over timeCommon 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?Slide16

Uses of Social Media in ResearchSome common uses:Recruitment

Delivery of interventions/interactionsObservation of usersData MiningFollow-up on participantsSlide17

Recruitment Slide18

Recruiting in Pregnancy Clinical TrialsSocial 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 methodsThe 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.Slide19

FB Ads for Health-Related SurveyFB 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 studyAds displayed more than 36 million times (to 450,000+ FB users), 8339 clicks (7940 unique users) on the ad, 551 indicated interest in the study278 completed survey (3.5% of those who clicked on ad)Cost – approx. 67 cents per click Slide20

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.Slide21

HPV Vaccine StudySame recruitment methodology as Australia study18-30 year olds, speak English, live in Twin Cities Metropolitan

AreaSurvey about HPV vaccination2079 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).Slide22

FB Ads to Achieve FDA Compliance2 UAB studies

:Cardiac arrest study: comparing 2 methods of delivering chest compressionsFB 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 shockFB 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)Slide23

FB Ads, FDA (cont’d)Over 5.1 million displays of cardiac study ad in approx. 1 month on display437 clicks

to go to study site (75% new visitors)Mostly female, ages 40-54Over 10.4 million displays of trauma study ad in approx. 3 months743 clicks to go to study site (66% new visitors)Mostly female, ages 40-54Cost approx. $1000 per study, low opt-out rate (only 1, in cardiac study)Slide24

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.Slide25

Ethical Considerations re: Recruitment Slide26

Found Through FacebookInterviews w/ 132 young adults about alcohol/substance use, mental healthParticipants 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 pageAs part of interview, participants asked how they felt about having been identified by Facebook pageStrongly 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.Slide27

Found Through FB ConsiderationsIf FB profiles visible, all is fairOK as long as no “bad” intentionsAll 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 wereMoreno, 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.Slide28

Considerations re: Social Media AdsInformation is likely transmitted back to social media site (e.g. FB) when people click on recruitment adsAppropriate 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 guidancehttp://meetinglibrary.asco.org/content/11400101-144#EdBookAM201434e101-table1Slide29

UAB FB AdsNot 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 notDo FB users understand the information presented?Slide30

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?Slide31

Delivery of InterventionsSlide32

A Facebook Intervention For STI Prevention – Just/UsStudy conducted through CO School of Public Health

2 FB study pages – intervention, controlControl page – news/info unrelated to sexual healthIntervention page – 8 weeks, 8 topics, with videos/quizzes/games/discussions (w/ pre and post assessments at 2 mos., 6 mos.)Slide33

Just/Us (cont’d)Participants instructed to “Like” page for assigned groupStudy 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 termBull 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=1Slide34

FITNET Study at UNCFor young adult cancer survivors, comparing FB-based intervention to increase physical activity with FB self-help comparison groupComparison 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 toolsSlide35

FITNET – Additional InfoFB group for comparison group included unmoderated discussionFor 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 study77% 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.Slide36

Facebook and Emotional ContagionNewsfeed of almost 700,000 users manipulated over course of a week

Some saw more positive posts, some saw more negativeStudied whether seeing more positive or negative content led to more positive or negative postingsMore than 3 million posts analyzed, found people who viewed positive content were more positive, who viewed negative content were more negativeKramer, 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.Slide37

Ethical Considerations re: Delivery of InterventionsSlide38

General ConsiderationsHow generalizable are the results if eligibility criteria includes use of Internet/social media?Security concernsSlide39

Just/Us – Ethical ConsiderationsConsent sought from all participants

Willingness to “Like” page was part of inclusion criteriaFB friends may know when a user “Likes” a pageControlled through Privacy settingsAre participants ok with friends knowing they liked this type of page?Important to note this in consent processSlide40

FITNET – Ethical ConsiderationsFB 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 timeCoordinator communicating with participants in view of other participants, on FB serverSatisfaction rates were high, both groups increased their physical activitySlide41

Facebook Emotional Contagion Concerns No consent obtained specifically for this study

Consent presumed based on acceptance of FB Terms of UseFB worked with researchers from CornellNo IRB approval from CornellIRB said not HSR because Cornell only involved in designing study and writing paperPNAS published correctionConcern 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?Slide42

ObservationSlide43

Patient Registry +Univ. of Chicago monogenic diabetes registry studyNeonatal Diabetes Registry & Maturity Onset Diabetes of the Young Registry

Included private Facebook discussion group for Neonatal Diabetes Registry participants46% of NDR registry participants or parent representatives joined FB groupGreeley 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.Slide44

https://registration.monogenicdiabetes.uchicago.edu/registry/neonatal-registry/discussion-groupSlide45

Ethical Considerations re: Observation Slide46

Registry Study – Ethical Issues To ConsiderSeparate consent form for web-based discussion

http://www.kovlerdiabetescenter.org/assets/documents/Registry%20Consent%20Forms/BNDMRDiscussionGroupConsentRev072809.pdfPrivacy:FB group only open to registry participantsParticipants need not post, can read onlyPosts may be linked by researchers to study informationReminder that posts will be read by other participants

Researchers may quote post in publication, but steps will be taken to try to protect confidentialityReminder to consult physician before making any changes to medical care/treatmentFeedback about discussion groups – very positive!Slide47

Participant Follow-UpSlide48

Longitudinal Study of Drug Users1999-2001, initial interviews conducted

2001-2004, follow-up interviews conducted2009-2011 – 2nd set of f/u interviews, some participants located through Facebook48/551 participants contacted through FB11/48 completed final interview2 others responded to contact but did not complete final interview

Bolanos 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.Slide49

Longitudinal Literacy StudyIntervention 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 interventionReported 61.7% retention rate in studyWould have been 45.8% if they had not used Facebook to locate participantsIf only had used phone, snail mail,

emailMychasiuk, R., &

Benzies, K. (2012). Facebook: an effective tool for participant retention in longitudinal research. Child: care, health and development, 38(5), 753-756.Slide50

Puff City StudyOnline asthma education/management programRCT 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 mailRedialing defunct phone # on weekly basis***FB outreach (research staff initiated friend request)

Assistance from school administration51 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.Slide51

Ethical Considerations re: Participant Follow-UpSlide52

Participant Follow-Up – Ethical IssuesIs 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)?Slide53

From Our ExamplesMeth study received IRB approval for message content, limited the number of contacts made through FB, only contacted those whose identity they could verifyAsthma 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? Slide54

Data MiningSlide55

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 Slide56

Tastes, Ties, and Time2008 – 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 collegePlans 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).Slide57

Data Mining on PatientsLikeMeStudy 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 profilesSite asks patients to track their symptomsNakamura 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.Slide58

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 allowedCollected 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.Slide59

Another Emotional Contagion StudyResearchers 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 yearsPositive posts decreased negative posts by friends, negative posts decreased number of friends’ positive posts Published shortly before Cornell study

Coviello, 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.Slide60

Ethical Issues re: Data MiningSlide61

Data Mining In GeneralOften done without consent of those whose posted information is minedIf 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 informationSlide62

Harvard Data Set ProblemsInformation collected without consent of

studentsInstead, by research assistants w/ prior accessResearchers claimed data de-identified, claim weakUniversity easily identifiable b/c:Size, general location of institution known

Unique names of majors were included in data setSome student housing info provided by schoolThen could identify individual studentsHome states included Demographic info includedData 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).Slide63

FB Emotional ContagionStudy approved by UCSD IRBParticipant 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?Slide64

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 purviewResearch that is not HSR should still be conducted ethicallyBut many reasons IRB should refrain from acting outside its purview

Financial resource limitationsHuman resource limitationsDelays in researchSlide65

What is a Human Subject?“A living individual about whom an investigator (whether professional or student) conducting research obtains

Data through intervention or interaction with the individual, or (2) Identifiable private information.”45 C.F.R. 46 §46.102(f)Slide66

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))Slide67

What Does This Mean?Communication

Imparting/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)Slide68

Data Mining on Social Media Unlikely Intervention/Interaction

Not intervening Only a “one-sided transaction”Site users need not know their pages were viewedResearcher 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?Slide69

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)Slide70

Don’t Privacy Settings Make the Information Private?Most social networking sites allow users to restrict who has access to information

postedAccount privacy settings can be managedSite itself is password protectedBut password does not protect information from being viewed by others

And on most sites, anyone over 13 can obtain username, passwordPrivacy settings do not protect against re-disclosure of posted informationPurpose of social media is to share informationCourts have said no social media privilegeSlide71

Common Themes Among All Research OnlineEthical (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 settingConcerns about when IRB approval is necessary (e.g. PNAS study)Slide72

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.Slide73

Are People Worried About Privacy?2005-2009 – decline in amount of information FB users shared publicly

But overall information posted on FB increasedCorresponded to increased privacy settingsConclusion: “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 informationEven 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.Slide74

Privacy and Young AdultsStudy of college-age females, focus groups in 2009 and 2012, asking about privacy on social media3 themes:

Facebook age limit of 13+ is appropriate because of safety and other concernsInformation 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 settingsMoreno

, 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.Slide75

Public BehaviorMany argue the Internet is a “public” forumCan there be a reasonable expectation of privacy while in public?Are all aspects of public behavior, including identity of actor, public?Slide76

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. Slide77

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?Slide78

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? Slide79

Consider the Following…Behind closed doors in bedroom at homeIn front of dining room window at homeShopping mall

Department store dressing roomFootball stadiumFootball stadium bathroomAA meetingInternetSlide80

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.”Slide81

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.” Slide82

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. S

ome of the information that Members provide about themselves may be shared with the PatientsLikeMe community, Partners, and others

. . .”Slide83

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, issueSlide84

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/termsSlide85

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_agreementSlide86

Ethical (and Practical) Implications of Obtaining ConsentSometimes, 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 teamBut 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”Slide87

Mechanisms for ConsentAre 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 userPrivate messageShould consent be active or passive (opt in vs. opt out)?How to ensure consent truly informed?E-consent, FDA draft guidance Mar. 2015Solberg, 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.Slide88

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-9155cdff659Slide89

A Side Effect of Social MediaFree flow of information on social media extends to research participantsEspecially 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 sharingVertex added provision to ICF directing participants not to discuss study participation onlineWhat 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.Slide90

ConclusionSocial media can be used in positive ways in researchResearch 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 projectsSlide91

Thank you!Lauren Solberg

University of Floridalbsolberg@ufl.edu352-273-5142