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Towards understanding users' motivation to share health information on Facebook Torabi, Sadegh 2016

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Towards Understanding Users’ Motivation toShare Health Information on FacebookbySadegh TorabiB.Sc. in Computer Engineering, Kuwait University, 2005M.Sc. in Computer Engineering, Kuwait University, 2009A THESIS SUBMITTED IN PARTIAL FULFILLMENTOF THE REQUIREMENTS FOR THE DEGREE OFMaster of Applied ScienceinTHE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES(Electrical and Computer Engineering)The University of British Columbia(Vancouver)April 2016c© Sadegh Torabi, 2016AbstractMotivated by the two-way benefits, people have used a variety of web-basedservices to share health information (HI) online. Among these services, Face-book, which enjoys the largest population of active subscribers, has become acommon place for sharing various types of HI. At the same time, Facebook wasshown to be vulnerable to various attacks, resulting in unintended informationdisclosure, privacy invasion, and information misuse. As such, Facebook usersface the dilemma of benefiting from HI sharing and risking their privacy.In this work, we investigate HI sharing practices, preferences, and riskperceptions among Facebook users. Our exploration focused on two maingoals: (1) to identify the key factors that influenced users’ motivation to shareHI on Facebook, and (2) to highlight a number of features that could motivatepeople toward engaging in effective HI sharing on Facebook.To achieve these goals, we first surveyed 166 active Facebook users abouttheir HI sharing practices and risk perceptions. We quantified HI sharing prac-tices and confirmed that it has become a common practice among users. More-over, we found that the type of the shared HI and its recipients, can highlyiiinfluence users’ perceived privacy risks when sharing HI. Following our pre-liminary survey, we interviewed 21 participants with chronic health conditionsto identify the key factors that influence users’ motivation to share HI on Face-book. Then, we conducted an online survey with 492 Facebook users in orderto validate, refine, and extend our findings.The results suggest that the gained benefits from prior HI sharing experi-ences, and users’ overall attitudes toward privacy, correlate with their motiva-tion to disclose HI. Furthermore, we identify other factors, specifically users’perceived health and the audience of the shared HI, that appear to be linkedwith users’ motivation to share HI. Finally, we suggest design improvements—such as anonymous identity as well as search and recommendation features—for facilitating HI sharing on Facebook and similar sites.iiiPrefaceThe author of this thesis conducted all the presented user studies (Chapters 4–6). He was responsible for collecting and analyzing the data. He also au-thored the corresponding publication(s) under the supervision of Dr. Kon-stantin Beznosov, who provided feedback and guidance throughout the re-search. The preliminary user study presented in chapter 4 of this thesis waspresented in the 2013 USENIX Workshop on Health Information Technologies(HealthTech’13):S. Torabi and K. Beznosov. Privacy Aspects of Health Related InformationSharing in Online Social Networks. In USENIX Workshop on Health Informa-tion Technologies (HealthTech’13). USENIX Association, August 2013.All three user studies presented in this work were reviewed by the Univer-sity of British Columbia’s Behavioural Research Ethic Board (BREB). Three hu-man ethics applications were submitted with the BREB numbers H13-00370,H13-03277, and H15-02520 for chapters 4 to 6 respectively. The approvalcertificate are available in Appendices A to C.ivTable of ContentsAbstract . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . iiPreface . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ivTable of Contents . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . vList of Tables . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xList of Figures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xiiAcknowledgments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xivDedication . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xv1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12 Background and Related Work . . . . . . . . . . . . . . . . . . . . . . 52.1 Social networking sites (SNSs) . . . . . . . . . . . . . . . . . . . . . 52.2 Sharing HI on SNSs . . . . . . . . . . . . . . . . . . . . . . . . . . . . 62.2.1 Perceived benefits . . . . . . . . . . . . . . . . . . . . . . . . 7v2.2.2 Perceived health status . . . . . . . . . . . . . . . . . . . . . 82.2.3 Perceived privacy . . . . . . . . . . . . . . . . . . . . . . . . 83 Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 113.1 Preliminary study: privacy perceptions and risk-mitigating be-haviors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 113.2 Exploratory study: interviews . . . . . . . . . . . . . . . . . . . . . 123.3 Confirmatory study: online survey . . . . . . . . . . . . . . . . . . 133.4 Limitations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 143.5 Ethical considerations . . . . . . . . . . . . . . . . . . . . . . . . . . 154 Preliminary Study: Privacy Perceptions and Risk-Mitigating Be-haviors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 174.1 Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 174.1.1 Participant recruitment . . . . . . . . . . . . . . . . . . . . . 184.1.2 Data collection . . . . . . . . . . . . . . . . . . . . . . . . . . 194.1.3 Survey items . . . . . . . . . . . . . . . . . . . . . . . . . . . 194.2 Results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 214.2.1 Participant demographics and SNS usage . . . . . . . . . . 214.2.2 HI sharing practices . . . . . . . . . . . . . . . . . . . . . . . 214.2.3 Perceived privacy risks . . . . . . . . . . . . . . . . . . . . . 264.2.4 Risk-mitigation behaviors . . . . . . . . . . . . . . . . . . . 324.2.5 Results summary . . . . . . . . . . . . . . . . . . . . . . . . . 334.3 Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34vi5 Exploratory Study: Interviews . . . . . . . . . . . . . . . . . . . . . . 375.1 Methodology and research questions . . . . . . . . . . . . . . . . . 375.1.1 Sampling and participants recruitment . . . . . . . . . . . 385.1.2 Data collection . . . . . . . . . . . . . . . . . . . . . . . . . . 395.1.3 Analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 415.2 Results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 425.2.1 HI sharing practices on SNSs . . . . . . . . . . . . . . . . . 425.2.2 Perceived benefits . . . . . . . . . . . . . . . . . . . . . . . . 435.2.3 The recipients of the shared HI . . . . . . . . . . . . . . . . 435.2.4 Perceived health status . . . . . . . . . . . . . . . . . . . . . 455.2.5 Perceived privacy . . . . . . . . . . . . . . . . . . . . . . . . 465.2.6 HI Sharing preferences . . . . . . . . . . . . . . . . . . . . . 515.2.7 Results summary . . . . . . . . . . . . . . . . . . . . . . . . . 536 Confirmatory Study: Online Survey . . . . . . . . . . . . . . . . . . . 546.1 Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 546.1.1 Why Facebook? . . . . . . . . . . . . . . . . . . . . . . . . . . 546.1.2 Participants recruitment . . . . . . . . . . . . . . . . . . . . 556.1.3 Data collection . . . . . . . . . . . . . . . . . . . . . . . . . . 556.1.4 Data analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . 566.1.5 Survey items . . . . . . . . . . . . . . . . . . . . . . . . . . . 576.2 Results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 596.2.1 Demographics . . . . . . . . . . . . . . . . . . . . . . . . . . 59vii6.2.2 Perceived health status . . . . . . . . . . . . . . . . . . . . . 616.2.3 Attitudes toward privacy . . . . . . . . . . . . . . . . . . . . 656.2.4 HI sharing experiences . . . . . . . . . . . . . . . . . . . . . 666.2.5 Motivation to share HI on Facebook . . . . . . . . . . . . . 686.2.6 Preferred recipients of the shared HI . . . . . . . . . . . . 716.2.7 Willingness to search for specific users . . . . . . . . . . . 736.2.8 Anonymous identity . . . . . . . . . . . . . . . . . . . . . . . 746.2.9 Willingness to trust SNSs with HI . . . . . . . . . . . . . . 807 Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 827.1 Motivating factors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 827.2 Implications for design . . . . . . . . . . . . . . . . . . . . . . . . . . 857.2.1 Search features . . . . . . . . . . . . . . . . . . . . . . . . . . 857.2.2 Anonymous online identity . . . . . . . . . . . . . . . . . . 857.2.3 Trusted SNS providers . . . . . . . . . . . . . . . . . . . . . 868 Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 889 Future Work . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 90Bibliography . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 91A Supplementary Materials for the Preliminary User Study . . . . . 98A.1 Survey Questions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 101A.1.1 Questions About Participants’ Demographics . . . . . . . . 101viiiA.1.2 Questions About SNS Usage . . . . . . . . . . . . . . . . . . 102A.1.3 Questions About HI Sharing Behaviours in SNSs . . . . . 103A.1.4 Questions About Privacy Risk Perceptions and BehaviouralResponses . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 105A.2 Categorization of HI examples . . . . . . . . . . . . . . . . . . . . . 107B Supplementary Materials for the Exploratory Study (Interviews) 109B.1 Interview guide and questions . . . . . . . . . . . . . . . . . . . . . 114B.1.1 Health condition background . . . . . . . . . . . . . . . . . 114B.1.2 Health management . . . . . . . . . . . . . . . . . . . . . . . 115B.1.3 SNS usage and background . . . . . . . . . . . . . . . . . . 115B.1.4 HI sharing on SNSs . . . . . . . . . . . . . . . . . . . . . . . 115B.1.5 A specialized SNSs for managing health conditions . . . 116B.1.6 Study related feedback . . . . . . . . . . . . . . . . . . . . . 116B.2 Supplementary results . . . . . . . . . . . . . . . . . . . . . . . . . . 116C Supplementary Materials for the Confirmatory Study (Online Sur-vey) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 119C.1 Survey questionnaire . . . . . . . . . . . . . . . . . . . . . . . . . . . 123C.2 Supplementary results: Online survey . . . . . . . . . . . . . . . . 136ixList of TablesTable 4.1 Participants demographics (N = 166). . . . . . . . . . . . . . . 23Table 4.2 Reasons for sharing HI online. . . . . . . . . . . . . . . . . . . . 25Table 4.3 Reasons against sharing HI online. . . . . . . . . . . . . . . . . . 26Table 5.1 Participants demographics. . . . . . . . . . . . . . . . . . . . . . 39Table 6.1 Participants demographics (N = 492). . . . . . . . . . . . . . . 61Table 6.2 PCA results for different personal information items. Thelast column represents the percentage of participants whowere likely to hide each information item. . . . . . . . . . . . . 79Table A.1 HI categories and examples. . . . . . . . . . . . . . . . . . . . . 108Table B.1 Participants demographics and health conditions. The firstcolumn represents participants’ ID. . . . . . . . . . . . . . . . . 118Table C.1 Health-related sites used by participants that are not consid-ered as SNSs. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 139xTable C.2 Positive HI sharing experience. The first two columns repre-sent the coded category and related sub-categories. The lasttwo columns represent the total number/percentage of pos-itive coded events under each category (272 total references).141Table C.3 Negative HI sharing experience. The first two columns rep-resent the coded category and related sub-categories. Thelast two columns represent the total number/percentage ofnegative coded events under each category (86 total refer-ences). . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 142xiList of FiguresFigure 4.1 Frequency of sharing different types of HI on SNSs. . . . . . 24Figure 4.2 Factors that might influence participants’ perceived privacyrisks when sharing HI on SNSs. . . . . . . . . . . . . . . . . . . 28Figure 4.3 Perceived privacy risks when sharing HI with select individuals. 29Figure 4.4 Perceived privacy risks when sharing HI with select groups. . 30Figure 4.5 Perceived privacy risks when sharing HI with entire contactlist. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30Figure 4.6 Perceived privacy risks when sharing HI with all SNS users. . 31Figure 4.7 Participants’ preferred risk-mitigating behaviors at differentrisk levels. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33Figure 5.1 Data analysis and theoretical saturation (21 interviews and123 unique codes). . . . . . . . . . . . . . . . . . . . . . . . . . 40Figure 6.1 Health conditions cumulative percentage frequency (95%). 63Figure 6.2 Perceived health status and the number of reported healthconditions. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 64xiiFigure 6.3 Categorizing participants according to their perceived healthstatus and the number of health conditions. . . . . . . . . . . 64Figure 6.4 Attitudes toward privacy (Westin Privacy Index). . . . . . . . 66Figure 6.5 Percentage of participants who shared details of their HIwith other user groups on Facebook (n= 253). . . . . . . . . 67Figure 6.6 HI sharing experience evaluation (n= 250). . . . . . . . . . . 68Figure 6.7 Willingness to disclose HI to different recipients on Facebook. 72Figure 6.8 Willingness to “search” for specific recipients on Facebook. . 74Figure 6.9 Willingness to use an “anonymous” identity for sharing HIon Facebook. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 75Figure 6.10 Willingness to hide different information pieces when cre-ating an “anonymous” identity for the purpose of sharingHI on Facebook. . . . . . . . . . . . . . . . . . . . . . . . . . . . 77Figure 6.11 Willingness to trust different SNS providers. . . . . . . . . . . 81Figure C.1 Participants’ age distribution. . . . . . . . . . . . . . . . . . . . 137Figure C.2 Participants’ employment categories distribution. . . . . . . . 138xiiiAcknowledgmentsFirst, I would like to thank my kind advisor, Konstantin Beznosov, for patientlyguiding me through this journey. Second, I would like to thank all membersof LERSSE for their feedback and constructive discussions. I am greatly thank-ful to Yazan Boshmaf, Ildar Muslukhov, Pooya Jaferian, San-Tsai Sun, HootanRashtian, Primal Wijesekera, Ivan Cherapau, and Ahmad Mahfouz. Also, Iwould like to thank Hyoungshick Kim and Primal Asanka for their guidanceand feedback during different stages of the research. Third, I would like tothank NSERC Internetworked Systems Security Network (ISSNet), for theirpartial funding and support of the research. Last but not least, I would like tothank my beloved family, especially my parents, my wife, and all those whoshowed endless support and compassion through my journey.xivDedicationTo my beloved parents, my dearwife, and all my family memberswho never stopped supporting me.xvChapter 1IntroductionPatients with chronic health condition(s) can benefit from sharing their healthinformation (HI)1 on SNSs in different ways: seeking or providing socialsupport, learning from the shared experiences, and self-management educa-tion [43, 48, 56]. Furthermore, sharing HI on SNSs was shown to be ben-eficial not only to the individuals themselves, but also to their online socialpeers. Motivated by the two-way benefits, a variety of web-based serviceshave been used by patients to share their HI with other people (e.g., Blogs,emails). Among these services, Facebook, which have attracted the largestnumber of active online users, have emerged as a common place for sharingdifferent types of personal information, including HI [22, 46].A variety of methodological approaches were used to understand patients’HI sharing practices and the benefits of sharing HI among different patient1Any type of information related to the health of an individual including personal healthinformation (PHI), electronic health records (EHRs), and personal health records (PHRs)1groups (e.g., breast cancer patients) [43, 48]. Despite the benefits, revealingHI to other people was always associated with privacy concerns. In addition,an implicit consensus among people was noted toward the idea that their HIshould be considered as “personal” and “private” information [42, 48]. Be-sides that, Facebook was shown to be vulnerable toward different attacks,resulting in unintended information disclosure, privacy invasion, and medicaldata misuse [10, 25, 55]. One can argue that the general attitude towarddisclosing HI on Facebook might be influenced by the perceived privacy risksand the gained benefits (privacy calculus) [40]. Moreover, while a numberof studies brought attention to the benefits and the privacy concerns relatedto HI sharing on Facebook, there has been little done to understand the mainfactors that influence patients’ motivation to engage in effective HI sharingon Facebook [39, 43, 44]. In addition, given that existing SNSs’ security andprivacy features were not designed to support patients’ privacy requirementswhile sharing HI on SNSs, it is important to design new features that enablepatients to communicate their HI effectively and without any concerns. This,however, demands building a better understanding of patients’ practices andpreferences when sharing HI on SNSs.In this study, we bridge the knowledge gap by answering the general re-search questions: Why, how, and with whom patients share their HI on Face-book? Following a series of qualitative and quantitative studies, we exploredFacebook users’ HI sharing practices and risk perceptions. We started by con-ducting a preliminary online survey to collect quantitative data from a broad2number of active Facebook users. The survey aimed at corroborating priorfindings while removing the uncertainties that were caused by the limitedrelated work. After that, we adopted a grounded theory approach to inter-view individuals with chronic health conditions [12]. We focused on exploringusers’ practices, preferences, and risk perceptions when sharing HI on SNSs.The interviews helped us in developing a better understanding of the reason-ing behind patients’ behaviors and privacy perceptions, while identifying thekey factors that influenced patients’ motivation to share HI on SNSs. We con-ducted an online survey in order to confirm and extend upon our findings. Theonline survey provided the opportunity to recruit a more representative sam-ple of Facebook users. Moreover, analyzing the quantitative data resulted gen-eralizable findings that characterized the main factors that influenced users’motivation to share HI.The results showed that participants who previously shared their HI onFacebook, especially those who gained some benefits, were more willing toshare their HI. On the other hand, despite the perceived benefits, participantswho had strong privacy concerns (privacy Fundamentalists) were always un-likely to share their HI, as compared to others who showed more flexibility inthe presence of different motivating factors (privacy Pragmatists and Uncon-cerned). Along with the aforementioned factors, we also showed how partici-pants’ perceived health status could influence their motivation toward sharingHI with other social peers, especially strangers. Furthermore, we showed thatthe recipients of the shared HI, and the type of the shared HI, could also play3a major role in motivating participants toward sharing their HI. Other thanthe factors that influenced HI sharing motivation, our results highlighted anumber of features that could motivate users toward engaging in effective HIsharing on Favebook (e.g., anonymous identity, search and recommendationfeatures). Armed with such an understanding, new privacy-preserving fea-tures could be developed that might be more effective in practice. Ultimately,while optimizing the gained benefits, these features would improve Facebook’sprivacy and make it less vulnerable toward privacy threats.The rest of the thesis is structured as following: we summarized back-ground and related work in Chapter 2. We presented the overall methodologyin Chapter 3. Details of the conducted user studies are presented in Chap-ters 4, 5, and 6 respectively. The main findings of the research were discussedin Chapter 7. Finally, we concluded the thesis by presenting conclusions andfuture work (Chapters 8 and 9).4Chapter 2Background and Related Work2.1 Social networking sites (SNSs)Social networking sites (SNSs) are web-based services that allow their usersto create visible profiles within the site, maintain connections with a list ofonline users (including strangers), and interact with other users through thecreated connections [8]. SNSs are classified as Web 2.0 sites that incorporatestrong social components (e.g., maintaining friends lists), and encourage shar-ing user-generated contents (e.g., photos, comments) [15]. While a variety ofadditional services are provided by different SNSs (e.g., online gaming), theyare mainly used to facilitate maintaining social relationships. Also, SNSs pro-vide their users with the opportunity to establish new relationships with otherswho share common interests or background [39]. It is important to recognizethat a number of web-based services might also incorporate properties similar5to SNSs, where they allow limited profile creation and collaborative communi-cations among members of the site (e.g., blogs, discussion forums). However,despite the similarities in terms of the implementation of social components,there has been uncertainty about classifying these online services as SNSs dueto the adopted user interface technology and architecture [8, 15].2.2 Sharing HI on SNSsSNSs have been developed and used for a variety of purposes, including butnot limited to: socializing and content sharing (e.g., Facebook, Twitter), net-working and maintaining professional profiles (e.g., LinkedIn), and peer-to-peer communication (e.g., Skype). The highly inter-connected nature of ex-isting SNSs, and the increasing number of users have encouraged people toactively engage in sharing different types of information on SNSs. Severalstudies have indicated that HI sharing is becoming a leading habit among aconsiderable number of SNSs users [22, 41, 49]. The results of the Pew In-ternet survey [21] indicate that a considerable number internet users in theUS went online to follow their friends’ personal health experience, with a no-ticeable increase when compared to the previous reports. Meanwhile, 16% ofthe surveyed participants reported going online to find others who had sim-ilar health concerns [22]. Moreover, people with health concerns have beenshown to visit their SNSs to seek support from other online peers [46].Despite their practices, users’ motivation to share HI on SNSs was shownto be influenced by a number of factors:62.2.1 Perceived benefitsThe benefits of using SNSs for HI sharing has been discussed in a number ofstudies [42, 43, 56]. Lederman et al. [38] discussed the benefits of addressingsocio-technical needs by utilizing SNSs and developing engaging therapeuticsolutions for mentally ill patients. Following a user-centered design approach,Skeels [48] captured breast cancer patients’ HI sharing requirements and de-signed an online interactive technology to facilitate HI sharing and manage-ment. Kamal [30] also used a similar approach to design a SNS prototypefor promoting healthy behavior changes. Despite the reported benefits forpatients, literature reviews showed that only a small number of studies havefocused on the effects of using SNSs on patients’ health management. For in-stance, Merolli et al. [43] reviewed the literature and found that among all theidentified studies (N=19), only five studies focused on SNSs (classified as web2.0 sites). For them, this was a clear indication that research on SNSs usage inchronic disease management was still in its early stage. Moreover, Moorheadet al. [44] surveyed primary research and identified the lack of informationabout the uses, benefits, and limitations of social media for health communi-cation among the general public, patients, and health professionals. Similarconclusions were also drawn by Lefebvre and Bornkessel [39]. Furthermore,they suggested addressing a number of general research questions in order tobetter understand how SNSs can be effectively and efficiently used to improvehealth across the population.72.2.2 Perceived health statusPatients’ motivation to engage in protective health behaviors was shown to beinfluenced by the severity and the likelihood of their health conditions [52]. Inthe context of HI sharing on SNSs, a number of studies have shown that peoplewho suffered from chronic health conditions were likely to visit SNSs to seekor share their HI with other social peers [21, 46]. There are different waysto asses one’s overall health status and the severity of the health conditions.The self-reported perceived health status was used as a reliable measurementof patients’ overall health status in a number of studies [28, 54]. Also, theyfound a correlation between the perceived health status and the number ofhealth conditions, with patients who had “poor” health to have more healthconditions. Nevertheless, the subjective assessment of the health conditionsmight not always accurately describe the overall health status. For instance,one might suffer from a number of severe health conditions and yet considerhis health to be stable or good, while another person might have a minorhealth issue and feels completely devastated by his health issues.2.2.3 Perceived privacyThe nature of SNSs can lead to the diffusion of personal information beyondits intended targets, while resulting in the lack of subsequent control overits exposure [10, 27, 44]. In general, information revelation in SNSs wasshown to be influenced by the raised privacy concerns due to both the per-sonal experiences and the negative reports in the media [55]. In the context8of SNSs, privacy concerns have been always associated with sharing HI amongusers [16, 51]. A survey of 1060 US adults found that 63% raised concernsrelated to publicly sharing their HI on SNSs, while 57% were concerned thattheir HI might be hacked or leaked from the SNSs [3]. Morris et al. [45]surveyed different types of questions that SNSs users asked their social peersabout and found that “health” was a type of topic that people tend to considertoo personal. Moreover, SNSs were considered as inappropriate places for dis-cussing overly personal information such as information related to individual’shealth [16, 45].It has been shown that internet users’ privacy concerns and their attitudestoward privacy could highly influence their motivation to disclose personalinformation to online sites [11, 16, 49]. The Westin privacy index was intro-duced as a way to meaningfully classify internet users based on their attitudestoward privacy and their motivations to disclose personal information on theinternet [33]. According to the Westin privacy index, internet users could bedivided into three groups: (1) Privacy Fundamentalists, who highly value pri-vacy and feel very strongly about it; (2) Privacy Pragmatists, who have strongfeelings about privacy but can also see the benefits from surrendering someprivacy in situations where they believe they can prevent the misuse of theirinformation; and (3) Privacy Unconcerned, who have no real concerns aboutprivacy or about how other people and organizations use their information.A number of studies showed that the Westin privacy index could be used as areasonable indicator of internet users’ attitudes toward privacy and their moti-9vation to disclose personal information online [11, 14, 33, 34]. Nevertheless,Woodruff et al. [53] argued that the prescribed classification of internet usersusing the Westin privacy index might not always correlate with their motiva-tion to disclosure information online. Despite their argument, we found thatthe literature provides sufficient evidence to reflect on the overall correlationsbetween internet users’ privacy attitudes and their motivation to disclose per-sonal information online.10Chapter 3MethodologyThe research was conducted following a three steps methodology: (1) a broadsurvey of active SNS users HI sharing practices and risk perceptions in order tocorroborate prior findings and identify important research directions; (2) in-depth interviews to explore patients’ motivation to share HI on SNSs; and (3)a confirmatory survey in order to test our previous findings and identify themain factors that influenced HI sharing motivations on SNSs. In what follows,we provide more details about the methodology used for each conducted userstudy:3.1 Preliminary study: privacy perceptions andrisk-mitigating behaviorsThe goal of the initial study was to address the uncertainties with respect tofindings from literature (Chapter 4). In early stages of this research, we ex-11plored SNS users’ privacy perceptions and risk-mitigating behaviors. To thebest of our knowledge, previous studies were either limited to niche demo-graphics (e.g., teenage patients, elderly patients, mothers with children incustody) [26, 47, 48, 51], or focused on non-SNS users [19, 22, 42, 56]. Inaddition, while the literature on “information sharing security and privacy”was quite rich in content, it lacked the quantitative data on active SNS users’practices and privacy perceptions when sharing HI on SNSs. Therefore, build-ing upon the partial knowledge gained from literature, we employed an onlinesurvey as the first step toward exploring HI sharing practices and risk percep-tions. We used the online survey to quantify HI sharing practices and riskperceptions. Furthermore, the online survey was used to corroborate priorfindings by reaching a broad number of active SNS users, while highlightingimportant research directions.3.2 Exploratory study: interviewsIn an effort to develop a better understanding of users’ motivation to shareHI on SNSs, 21 chronically ill patients were interviewed about their moti-vation to share HI on SNSs (Chapter 5). Following a qualitative approach,we explored participants’ HI sharing practices, perceptions, and preferences.Our main objective was to understand how patients, who were also activeSNSs users, shared instances of their HI with other peers on SNSs. We useda grounded theory approach to guide our sampling, data collection, and dataanalysis [12]. The grounded theory approach was adopted in order to avoid12any prejudices, presuppositions or previous knowledge of the subject area, thatis, we concentrate on finding new information, ideas and themes in the datawe collect. Our investigation started with semi-structured interviews, with theflexibility to add new questions during the interviews when new and interest-ing inputs were captured. The iterative data collection and analysis procedurehelped us in developing a deep understanding of patients’ perceived privacyrisks while identifying the main factors that influenced their motivation toshare HI on SNSs.3.3 Confirmatory study: online surveyFollowing our exploratory interviews, we conducted a confirmatory study ina form of online survey. The online survey consisted of a mixture of close-and open-ended questions, where the questionnaire was designed to collectdata for the purpose of testing prior findings along with investigating newinsights on HI sharing motivation on SNSs. The goal of the online surveywas to provide quantitative data from a representative sample of SNS usersin order to confirm and extend our findings from the exploratory study. Thequantitative data was used to describe SNS users’ practices, perceptions andmotivations. The data was also used to perform inferential statistical analysisthat helped in identifying the main factors that influenced users’ motivation toshare HI on SNSs. Further details on sampling, data collection, and analysis ispresented in Chapter 6.133.4 LimitationsWhile individual interviews can lead to better understanding of user behav-ior, they have few limitations. First, the interview results are limited by par-ticipants’ prior experiences. Second, participants might indicate behavioralpreferences that they may not necessarily practice in real life [6]. Third, inter-views are hard to scale in terms of the number of participants, and therefore,their findings are not generalizable. Finally, the interview results might beinfluenced by the interviewer biases [29]. To overcome the limitations, werestricted the participation to patients who were also active SNSs users, withat least one SNS account that they used regularly. To minimize the secondlimitation, we tried to infer privacy preferences from participants’ previous HIsharing practices. To address generalizability, we conducted a followup surveyto confirm our findings from the interview study. Finally, to avoid imposingbiases on the responses of participants, we asked open-ended questions andtried to probe the participants to tell their story from their own perspectives.The main limitation of the online survey was in the self-reported natureof the data, which was hard to validate without violating participants’ pri-vacy. For instance, participants reported a number of health conditions thatwere difficult to confirm in real life. Therefore, we used the self-reported dataas our ground truth throughout the study. Nevertheless, to minimize threatsto validity, the survey questionnaire and responses were reviewed and testedprior to conducting the study. Whenever necessary, the survey questionnaire14was modified by incorporating participants’ comments and feedback in orderto ensure unique understanding and avoid confusion. Finally, a crowdsourc-ing tool (MTurk) was used to reach a broad range of participants and recruita representative sample of SNS users.3.5 Ethical considerationsThis work consisted of two online surveys and an interview study. All stud-ies were reviewed by the University of British Columbia’s Behavioural Re-search Ethic Board (BREB). The study related materials are available in Ap-pendices A–C. We minimized risk to participants by excluding any personallyidentifiable information from the collected data, generated results, and pub-lished reports. Participation in all studies were completely voluntarily, andparticipants were able to withdraw from the study at anytime.For the online surveys, we used Amazon Mechanical Turk (MTurk) to re-cruit participants. For each survey, we posted a task on MTurk that containeda link to the survey website, where participants reviewed the study descrip-tion and policies before consenting to participate in the study (Appendix Aand C). To guarantee compensation by MTurk, participants were required toprove survey submission by entering a unique 7-digit alpha-numeric code thatwas assigned to them upon survey completion.For the interview study, participants were recruited through media ad-vertisements. An informed consent was obtained prior to interviewing eachparticipant in order to ensure complete awareness about the nature of the15study and the collected data (Appendix B). All recorded media, transcripts,and consent forms were identified by codes. To ensure complete anonymity,pseudonyms (false names) were substituted for participants’ real names andthe names of anyone else mentioned during the interviews. Furthermore, theinvestigators and the transcriptionists were the only people that were allowedto hear the recorded interviews and/or see the transcripts.16Chapter 4Preliminary Study: PrivacyPerceptions and Risk-MitigatingBehaviorsBy employing an online survey on a broad number of active SNS users, weaimed at confirming our partial knowledge on HI sharing practices and riskperceptions. We also aimed at identifying important research directions byexploring several broad aspects of HI sharing on SNSs.4.1 MethodologyWe surveyed active SNS users’ HI sharing practices and privacy perceptions.The online survey gave us the opportunity to reach a broad range of activeSNS users. By answering the following research questions (RQs), we aimed at17providing descriptive statistics that quantify HI sharing practices while high-lighting users’ privacy concerns and risk-mitigating behaviors:RQ1. What types of HI is being shared on existing SNSs?RQ2. What are the main reasons for/against sharing HI on SNSs?RQ3. How does SNS user’s risk perceptions changes when sharing differenttypes of HI with various SNS users?RQ4. What are the preferred risk-mitigating behaviors that SNS userswould adopt when sharing HI on SNSs?4.1.1 Participant recruitmentWe recruited Amazon MTurk [2] workers through CrowdFlower [1], a crowd-sourcing website that provides different labour channels. MTurk workers, whowere shown to be more educated and younger than the general population,can be considered as a reliable source of high-quality data for research involv-ing human-subjects [50]. We recruited “trusted” MTurk workers, who wereidentified by CrowdFlower according to different factors (e.g., their prior com-pleted jobs and reported activities). The posted recruitment ad title did notmention privacy, while in the instructions, participants were requested to com-plete an online survey about their HI sharing practices, perceived privacy risks,and corresponding behavioral responses (Apppendix A). The survey was de-signed to take less than 30 minutes to be completed. Participants were alsocompensated with $1 (US) through CrowdFlower for successfully completingthe job.184.1.2 Data collectionOn April 4th, 2013, 191 participants successfully completed the survey. Theconstructed online survey was administered on Enterprise Feedback Manage-ment (EFM), which is a Canadian-hosted survey solution complying with theFreedom of Information and Protection of Privacy Act of British Columbia.1Out of the all participants, two did not consent to the study, and thereforewere removed from further analysis. The majority of participants were fromthe US (87.8%), followed by India (9.5%). We also received a single submis-sion from participants residing in each of the following countries: Australia,Philippines, Romania, Canada, and UK. We decided to minimize the effect ofcultural differences in our analysis by discarding submissions made by partic-ipants residing outside of the US [5]. The remaining 166 submissions wereincluded in further analysis throughout the study.4.1.3 Survey itemsThe survey questionnaire consisted of the following sections (Appendix A.1):SNS usageWe asked participants about the total number of active SNS accounts theymaintained, and, for each active SNS account, we asked the following: (i)name of the SNS; (2) how often the SNS account was used; and (3) the pre-ferred device for connecting to that SNS account (e.g., smartphone, laptop,1This enterprise-level survey tool represents a comparable alternative to the US-based Sur-vey Monkey.19tablet).HI sharing practicesAs shown in Appendix A.2, we grouped different HI examples found in theliterature into eight HI categories [21, 22, 48]. For each category, we askedparticipants to rate the likelihood of sharing information from never to alwayson a 5-point Likert scale. We also asked participants to specify all reasonsfor/against sharing HI by selecting all that applied from a list of given reasons.Perceived privacy risksWe identified several factors that influenced the perceived privacy risks (HIrecipients, HI category, used SNSs, and current health conditions). We askedparticipants to identify how much each factor contributed to their perceivedprivacy risks by rating their responses on a 5-point Likert scale from does notaffect at all to strongly affects. We also asked participants to rate their per-ceived privacy risks when sharing different HI with the following users: selectindividuals, select groups, entire contacts, and all other SNS users (responsesvaried on a 5-point Likert scale from very low or no risks to extreme risks).Risk-mitigating behaviorsIn a hypothetical situation, we asked participants to indicate their preferredrisk-mitigating behavior(s) when sharing HI on SNSs at different assumed pri-vacy risk levels (very low or no risks–extreme risks). Participants selected theirpreferred risk-mitigating behaviors from a given list of options (Appendix A.1).204.2 Results4.2.1 Participant demographics and SNS usageA total of 166 participants successfully completed the survey. Participants rep-resented SNS users from 39 different states. Submissions were made by anequal number of male (49.4%) and female (50.6%) participants, with an agerange of 19–70 years old (mean= 30.4, σ= 10). A summary of participantsage ranges, completed education, and employment categories is presented inTable 4.1. About 39% of all participants indicated having only one active SNSaccount, while 35.5% indicated using two SNSs. The remaining participantsindicated using 3 or more SNSs on regular basis. A total of 140 participantsindicated using their SNS account(s) on daily basis, among which the majority(96.4%) were active Facebook users.4.2.2 HI sharing practicesTo investigate HI sharing practices, we categorized different examples of HIthat people often shared online into eight HI categories (refer to Appendix A.2for further details). We asked participants to indicate on a 5-point Likertscale how regularly they shared information from each HI category. As shownin Figure 4.1, about 85% of participants never or rarely shared informationabout their medical health records on SNSs (e.g., x-rays, treatments, nameand address, insurance policy number). Slightly above 70% of participantsnever/rarely shared HI of people in their custody (e.g., children and elderly21parents), while about 65% of participants never/rarely shared other people’shealth related experience. Among all participants, only 7 participants nevershared any types of HI on SNSs, while the vast majority of participants (about96%) indicated sharing different types of HI on their SNSs. On the otherhand, about 40% of participants frequently or always shared useful found in-formation on SNSs (Figure 4.1). Furthermore, while about 25% of partici-pants frequently/always shared information related to their mental and emo-tional health conditions, slightly less than 25% of participants frequently/al-ways shared information related to their physical health conditions. About22% of participants frequently/always shared information related to their “ownexperiences” and “health living” categories. Finally, less than 10% of partici-pants reported frequently/always sharing information related to “experience ofsomebody else”, “HI of people in their custody”, or “medical health records”.22Table 4.1: Participants demographics (N = 166).Demographic Category Count (%)Gender Female 84 50.6Male 82 49.4Age range 19–29 90 59.0(19–70) 30–39 41 24.740–49 14 8.450+ 13 7.8Completed Undergraduate University (Bachelor’s) 66 39.8Education Some college/university courses 11 6.6Graduate University (Masters’s/PhD) 17 10.2High School 42 25.3Diploma (post-secondary courses) 21 12.7Other 9 5.4Employment Education/Academic 17 10.2Categories IT/Computer 16 9.6(Top 5) Medical/Health 14 8.4Sales (e.g., retail, wholesale) 13 7.8Banking/Financial 11 6.6230%	   20%	   40%	   60%	   80%	   100%	  Medical	  health	  records	  HI	  of	  people	  in	  your	  custody	  Experience	  of	  somebody	  else	  Mental	  and	  emo@onal	  health	  condi@ons	  Healthy	  living	  Own	  Experience	  Physical	  health	  condi@ons	  Useful	  found	  informa@on	  Never	   Rarely	   Some@mes	   Frequently	   Always	  Figure 4.1: Frequency of sharing different types of HI on SNSs.Reasons for sharing HI on SNSsTo identify the reasons for/agains sharing HI on SNSs, participants selected allthat applied from a list of common reasons obtained from the literature [21,22, 48]. The provided list of reasons, both for and against sharing HI representgeneral sharing motivation and are not related to any specific HI category. Assummarized in Table 4.2, more than half of participants (66.9%) shared theirhealth related knowledge and experience to “help others” in their social net-work, while about half of participants sought “social support” or “beneficialfeedback” from online social peers (51.8% and 48.2% respectively). It is in-24teresting to see that about 44% of participants shared their HI on SNSs inorder to initiate online interactions and discussions, while about 38% of par-ticipants used it as a way to alleviate their anxiety or promote healthy living(Tables 4.2).Table 4.2: Reasons for sharing HI online.Reasons for sharing HI Participants (%)Help others by sharing personal experience and knowl-edge66.9Seek help or social support 51.8Get benefits by receiving useful feedback from onlinecontacts48.2Seek online interactions and make discussions 44.0Alleviate anxiety 38.6Promote healthy living 37.3Other reasons 6.6Reasons against sharing HI on SNSsOn the other hand, for the HI that participants did not share on their SNSs, ap-proximately half of them (49.4%) indicated not sharing HI due to the existenceof different people among their SNS contacts (Table 4.3). In addition, 43.4%of all participants considered their HI to be “personal” and did not want toshare it with anyone on their SNSs. About 40% of participants avoided shar-ing their HI on SNSs because they did not want to be treated as “the sick”person by their online peers. Moreover, about 35% of participants did not25want others to worry about them, and therefore, tried not to share their HIonline. It is interesting to see that about half of the participants did not shareHI on SNSs due to its personal nature and due to the existence of differentpeople within their social contacts.Table 4.3: Reasons against sharing HI online.Reasons against sharing HI Participants (%)I have different people in my online contact list and Iprefer not to share my HI with all of them49.4My HI is personal and I do not share it with anyone 43.4I do not want to be treated as “the sick” person by myonline contacts39.2I do not want my online contacts to worry about me byreceiving bad news about my health34.9I do not want my online contacts to know about my HI 34.9I prefer to share my HI with my doctor 30.1I prefer to share my HI offline 22.3My online contacts are not interested in my HI 20.5Other reasons Perceived privacy risksIn the context of HI sharing on SNSs, a number of factors were thought toinfluence participants’ perceived privacy risks: (1) recipients of the sharedHI; (2) HI type and category; (3) SNS where the HI is shared; and (4) exist-ing health conditions. We asked participants to rate on a 5-point Likert scale26how much each of the above four factors would affect their perceived privacyrisks (responses varied between does not affect to strongly affect). As shown inFigure 4.2, only a small number of participants indicated that the “recipientsof the shared HI” and the “HI type/category” does not affect their perceivedprivacy risks (< 7%). Relatively more number of participants (about 13%)indicated that their “existing health conditions” and/or the “SNS where theHI is shared” do not affect their perceived privacy risks. On the other hand,about 60% of participants indicated that the shared “HI type/category” wouldsomewhat or strongly affect their perceived privacy risks (Figure 4.2). Approx-imately 55% of participants considered the “recipients of the shared HI” tobe somewhat or strongly affecting their perceived privacy risks. Furthermore,about 43% of all participants indicated that their “existing health conditions”and/or the “SNS where they share their HI on” would somewhat or stronglyaffect their perceived privacy risks.270%	   20%	   40%	   60%	   80%	   100%	  The	  recipients	  of	  the	  shared	  HI	  HI	  type	  and	  category	  The	  SNS	  where	  the	  HI	  is	  shared	  Exis@ng	  health	  condi@ons	  Does	  not	  affect	   Might	  affect	   Slightly	  affect	   Somewhat	  affect	   Strongly	  affect	  Figure 4.2: Factors that might influence participants’ perceived privacyrisks when sharing HI on SNSs.We also asked participants to rate their perceived privacy risks on a 5-pointLikert scale (with responses varying from very low or no risk to extreme risk),when sharing different types of HI with the following user groups on SNSs:select individual(s); select group(s); entire contact list; and all SNS users. Asshown in Figure 4.3, the majority of participants (about 95%) reported havingvery low or acceptable privacy concerns when sharing information related to“healthy living” or “useful found information” with select individuals. About85% reported very low or acceptable concerns when sharing information re-lated to their “physical health conditions” and/or their “own experiences” withselect individuals. Furthermore, while between 65% to 75% of participantshad no concerns with sharing “experience of somebody else” or their “men-tal/emotional health conditions” with select individuals, slightly over half of28participants (52%) raised similar concerns with respect to sharing “HI of peo-ple in their custody” with select individuals. Finally, when sharing informationrelated to “medical health records” with select individuals, approximately 43%of all participants raised very low or acceptable privacy concerns. On the otherhand, it was interesting to see that about 30% of participants raised high/ex-treme privacy concerns even when sharing information related to their “med-ical health records” or “HI of people in their custody” with select individuals.0%	   20%	   40%	   60%	   80%	   100%	  Healthy	  living	  Useful	  found	  informa<on	  Own	  Experience	  Physical	  health	  condi<ons	  Mental	  and	  emo<onal	  health	  condi<ons	  Experience	  of	  somebody	  else	  HI	  of	  people	  in	  your	  custody	  Medical	  health	  records	  Very	  low	  or	  none	   Acceptable	   Moderate	   High	   Extreme	  Figure 4.3: Perceived privacy risks when sharing HI with select individu-als.290%	   20%	   40%	   60%	   80%	   100%	  Healthy	  living	  Useful	  found	  informa<on	  Own	  Experience	  Physical	  health	  condi<ons	  Mental	  and	  emo<onal	  health	  condi<ons	  Experience	  of	  somebody	  else	  HI	  of	  people	  in	  your	  custody	  Medical	  health	  records	  Very	  low	  or	  none	   Acceptable	   Moderate	   High	   Extreme	  Figure 4.4: Perceived privacy risks when sharing HI with select groups.0%	   20%	   40%	   60%	   80%	   100%	  Useful	  found	  informa6on	  Healthy	  living	  Physical	  health	  condi6ons	  Own	  Experience	  Mental	  and	  emo6onal	  health	  condi6ons	  Experience	  of	  somebody	  else	  HI	  of	  people	  in	  your	  custody	  Medical	  health	  records	  Very	  low	  or	  none	   Acceptable	   Moderate	   High	   Extreme	  Figure 4.5: Perceived privacy risks when sharing HI with entire contactlist.300%	   20%	   40%	   60%	   80%	   100%	  Useful	  found	  informa6on	  Healthy	  living	  Physical	  health	  condi6ons	  Own	  Experience	  Mental	  and	  emo6onal	  health	  condi6ons	  Experience	  of	  somebody	  else	  HI	  of	  people	  in	  your	  custody	  Medical	  health	  records	  Very	  low	  or	  none	   Acceptable	   Moderate	   High	   Extreme	  Figure 4.6: Perceived privacy risks when sharing HI with all SNS users.As shown in Figures 4.3 to 4.6, the percentage of participants who raisedhigh/extreme privacy concerns when sharing different types of HI increasedwhile expanding the number of recipients from select individuals to all SNSusers. Furthermore, when sharing HI with different user groups, “medicalhealth records” and “HI of people in custody”, resulted the highest privacyconcerns as compared to other HI categories. To find out if there was sig-nificant differences in participants’ perceived privacy risks when sharing HIwith different user groups, we performed Friedman rank sum tests followedby a series of post-hoc Wilcoxon tests over all participants’ responses (withBonferroni adjustment). For “healthy living” and “useful found information”categories, we did not find statistically significant differences in participants’perceived privacy risks when sharing HI among entire contact list and all SNS31users (p> 0.0083). Moreover, no statistically significant difference was foundin participants’ perceived privacy risks when sharing “useful found informa-tion” with select individuals and select groups. All remaining pair-wise compar-isons resulted in statistically significant differences in participants’ perceivedprivacy risks when sharing HI among different recipients (p< 0.0083).4.2.4 Risk-mitigation behaviorsWe assumed that participants could avoid privacy risks by not sharing their HI(risks avoidance), or cope with the risks by manipulating the shared HI, filterits recipients, or changing the SNS [9, 37]. We also assumed that participantswere always able to share HI without taking any preemptive risk-mitigatingactions. While assuming variable risk levels, we asked participants to selecttheir preferred risk-mitigating behaviors when sharing their HI on SNSs.As shown in Figure 4.7, our results showed a diverse range of preferredbehaviors. At very low assumed risks, around 35% of participants preferred tominimize the risks by manipulating the shared HI, filtering the recipients, orchanging the SNS. Also, at the same risk levels, while less than 15% of partic-ipants preferred to accept the risks and share their HI, about 40% preferred toavoid the risks by not sharing their HI on the SNS. It is interesting to see thatat acceptable risks levels, over half of participants preferred to cope with therisks by either manipulating their shared HI or filtering its recipients. Further-more, we noticed a significant decrease in the percentage of participants whopreferred to minimize the perceived risks by manipulating the shared HI or32filtering its recipients at higher risk levels. On the other hand, while the per-ceived risk levels increased, we noticed a significant increase in the number ofparticipants who preferred not to share their HI on SNS, with about 58% ofparticipants choosing not to share HI at extreme risk levels (Figure 4.7).0%	  10%	  20%	  30%	  40%	  50%	  60%	  Minimize	  risks	  by	  manipula9ng	  the	  shared	  HI	  Minimize	  risks	  by	  filtering	  the	  recipients	  Minimize	  risks	  by	  changing	  the	  SNS	  Accept	  risks	  and	  share	  HI	  Avoid	  risks	  by	  not	  sharing	  HI	  Percentage	  of	  par9cipants	  Very	  low	  or	  none	   Acceptable	   Moderate	   High	   Extreme	  Figure 4.7: Participants’ preferred risk-mitigating behaviors at differentrisk levels.4.2.5 Results summaryWe constructed an online survey to investigate existing practices of sharing HIon SNSs. We recruited 166 active SNS users through Amazon Mechanical Turk(MTurk) [2]. We explored users’ privacy risks perceptions and risk-mitigatingbehaviors. Our results indicated that the majority of participants (95.8%)33shared some HI on SNSs. Reasons for sharing varied with “helping others”and “seeking help and social support” identified as the top reasons (66.9%and 51.8% respectively). On the other hand, about half of the participants(49%) preferred not to share their HI because of they had different peopleamong their SNS contacts, whom they did not want to share their HI with.In addition, the majority of participants (about 93%) considered the HI typeand its recipients to be the most significant factors influencing their perceivedprivacy risks. Finally, our results indicated that participants perceived lowerprivacy risks when sharing HI with select individuals or select groups, whiletheir risk perceptions increased with the expansion of the receiver base toinclude entire contacts and all SNS users respectively.4.3 DiscussionOur results contribute to better understanding of HI practices in SNS, per-ceived privacy risks, and preferred risk-mitigating behavior. We found thatmost active SNS users (about 96%), who indicated using their SNS account(s)on a daily basis, had shared some HI in the past. The influence of “infor-mation recipient” and “HI type and category” factors were clearly observedin increasing participants’ perceived privacy risks when sharing HI on SNSs(Section 4.2.3). As shown in Figures 4.3–4.6, for almost all HI categories, theperceived privacy risks of sharing HI on SNSs increased toward higher risklevels, with respect to the expansion of the recipient base. In addition, whensharing “healthy living” and “useful found information” categories with differ-34ent user groups, the results showed less granularity in participants’ perceivedprivacy risks. Therefore, while different recipient groups influenced partici-pants’ perceived privacy risks, the type of the shared HI was also shown to beinfluential in determining participants’ perceived privacy risks.Medical health records may include personally identifiable informationalong with information that is directly related to an individual’s health, andtherefore, participants’ concerns regarding sharing such information was justi-fiable. However, “HI of people in custody” had received considerable attentionfrom participants as well. We believe that people handle HI of other individu-als in their custody with extra care and with a sense of responsibility towardprotecting them against privacy threats. Moreover, the category “HI of peo-ple in custody” represents an abstract view of all HI related to a person incustody, including their medical health records. Therefore, participants mighthave considered an overall risk perception with respect to the most sensitiveHI categories, such as medical records of people in their custody, and as aresult, indicated high privacy concerns when sharing such HI.We explored participants’ preferred risk-mitigating behaviors at differentrisk levels. We found that even at extreme risk levels, about 41% of the partic-ipants shared HI, while minimizing risks using different techniques (manipu-late shared HI, filter recipients, and change the SNS). Furthermore, at accept-able risk levels, more than half of participants preferred to mitigate privacyrisks by manipulating and filtering shared HI and its recipients respectively.Meanwhile, about 19% of participants were extra cautious and preferred to35avoid risks by not sharing their HI, even at acceptable risk levels. A study ofEuropeans’ perception, behavior, and attitude toward sharing HI on the inter-net identified three sharing profiles: self-revealing (aware of risks but revealsinformation to gain benefits), indifferent, and cautious [42]. We believe thatour participants’ behavior could be profiled similarly, classifying participantswho shared HI regardless of the perceived risk levels as “indifferent,” whereas“self-revealing” participants to be those who were motivated to share their HIbut preferred to minimize risks by adopting available methods, and finally,“cautious” participants, who refused to share HI under any circumstances.36Chapter 5Exploratory Study: InterviewsIn an effort to develop a better understanding of users’ motivation to shareHI on SNSs, we explored participants’ HI sharing practices, perceptions, andpreferences.5.1 Methodology and research questionsFollowing a grounded theory approach [12], we interviewed 21 chronicallyill patients to explore their HI sharing experiences on SNSs. We aimed atidentifying the main factors that influenced participants’ motivation to shareHI on SNSs by answering the following research questions (RQs):RQ1. Why patients share their HI on SNSs?RQ2. How patients share their HI on SNSs?RQ3. With whom do patients share their HI on SNSs?375.1.1 Sampling and participants recruitmentFollowing a theoretical sampling approach [12], individuals with chronic healthcondition(s) were recruited through media advertisements. Potential partici-pants were invited to visit the study webpage, where they viewed details of thestudy, along with the consent form. To be eligible for the study, participantswere required to be: 19 years of age or older, living in greater Vancouver area,maintaining at least one active account on an SNS that they visited regularly,and having at least one chronic health condition. Participants were compen-sated with the amount of $25 (CAD) for taking part in the study.A total of 21 patients were interviewed throughout the study. The purpo-sive sampling of patients who had chronic health condition(s) assured partici-pants’ involvement in HI sharing practices. The sample included 7 women and14 men, ranging in age between 21 and 68 years old. Participants came fromdiverse ethnic backgrounds but all were speaking English fluently. A summaryof participant demographics is given in Table 5.1. Participants also came withdifferent health issues, including physical, mental, or both physical and men-tal health issues. Details about participants’ health conditions are presented inAppendix B.2.38Table 5.1: Participants demographics.Demographic CategoryCount(N=21)Gender Male 14Female 7Age range (21-68) 19-30 231-40 941-50 550+ 5Completed Education High School 3Some college/university 6Post secondary diploma 7University (BSc., MSc.) 5Health Condition Type Physical 14Mental 3Physical and Mental 4Health Conditions Single condition 14Count Two or more conditions 75.1.2 Data collectionData collection was done by means of audio recorded interviews. The semi-structured interviews lasted approximately sixty minutes each, and were con-ducted in different locations. An interview guide was developed to help inmanaging the interview flow and assuring purposeful data collection (Ap-pendix B.1). However, participants were always invited to tell their stories39according to their style and conventions. Data collection was directed by atheoretical sampling approach, where new data was collected and analyzed toelaborate and refine the identified themes respectively [12]. After analyzing17 interviews, the total number of identified unique codes reached a plateauwhere analyzing further interviews did not result new findings (Figure 5.1).Data collection was stopped after conducting 21 interviews, whereas “theoret-ical saturation” was achieved in the analysis.0	  10	  20	  30	  40	  50	  60	  70	  80	  90	  100	  110	  120	  130	  1	   3	   5	   7	   9	   11	   13	   15	   17	   19	   21	  Total	  number	  of	  unique	  codes	  Number	  of	  interviews	  Figure 5.1: Data analysis and theoretical saturation (21 interviews and123 unique codes).405.1.3 AnalysisThe analysis process started immediately after transcribing the first interviewand continued concurrently with the data collection process. The recordedinterviews were transcribed verbatim by professional transcriptionists. Inter-view transcripts were anonymized by removing identifiable information (e.g.,names). NVivo (Version 10.1) was used as the main qualitative data analysistool for coding and analyzing the transcripts.Constant comparison of coding and analyzing data through several itera-tive stages of open, axial, and selective coding were applied [12]. Open codingwas initially used to identify, describe, and categorize interesting phenomenathat were found in the data. The first set of transcripts were read line by lineand coded accordingly, resulting in 90 unique codes after analyzing 8 inter-views. At that point, we also started to look at interrelated codes that formedmeaningful categories (axial coding). The identified categories were as fol-lowing: perceived privacy, perceived benefits, the recipients of the shared HI,used technologies, prior HI sharing experiences, HI sharing motivation, trustedentities, anonymous communication, HI sharing preferences, and health status.We identified participants’ Motivation to share HI on SNSs as the core category(selective coding). We also identified the following sub-categories: perceivedprivacy, perceived health status, the recipients of the shared HI, prior HI sharingexperiences, and health status. The transcripts were further analyzed by selec-tively coding new data that was related to the core category until theoreticalsaturation was reached.41The analysis resulted in a total of 2,521 coded excerpts, with an average of120 coded excerpts per interview. The quality and consistency of the analysiswas checked by a second researcher, who reviewed and coded a total of 100randomly selected excerpts using our generated codes. Finally, memoing wasused frequently to describe coded events, explain observed concepts and theirrelations.5.2 Results5.2.1 HI sharing practices on SNSsWhile participants used a variety of SNSs, all participants were active userson Facebook. Considering the fact that more than 71% of North Americaninternet users are on Facebook,1 it is not an anomaly to have the majority ofparticipants to be Facebook users. Participants indicated going on their SNSson regular basis. Moreover, participants indicated using a variety of sites toshare or seek HI online (e.g., SNSs, blogs). Despite the fact that the identifiedsites were not designed to support HI among social peers, the majority of par-ticipants recalled sharing HI instances on them in the past:“I’ve got a lot of pictures on Facebook of when I was in hospital. I had picturesof myself, my scar, and everything else. All of those are on my Facebook.”–P2 (M,59, fractured back and defective knee)1 Perceived benefitsFrom simply sharing how a person feels at a specific moment, to detailed in-formation about treatments, participants experienced sharing HI with selectindividuals or groups in the past. Participants shared their HI with othersfor the sake of getting benefits. The benefits of sharing HI include but notlimited to: learning from the shared experience; initiating conversations withonline peers; justifying specific behaviors; reaching out to others who had sim-ilar health conditions; and engaging in social support. Moreover, participantsshowed interest in helping other people by providing social support, empa-thy, and experience-related feedback. It was also interesting to see how someparticipants felt relieved simply by talking about their problems with others,regardless of the expected reactions and responses:“I feel better letting them know. Whether they understand or not, I feel re-lieved telling them.”–P15 (M, 37, bipolar depression/anxiety)5.2.3 The recipients of the shared HIA number of participants (5/21) shared detailed HI with select family mem-bers and/or close friends via online services (e.g., email, SNSs). For instance,P21 (F, 35, herniated disks at L4-L5) used Facebook occasionally to communi-43cate her health issues with a friend, who was an experienced therapists, andtried to ask for her opinion and advice. Generally speaking, while partici-pants preferred to have in-person discussions of their health issues with otherfriends and family members, the online services have provided them with aconvenient way of communication, especially when physically distanced fromfriends and/or family members:“I do [talk about health on Facebook], and especially with my wife [she livesin a different province]. Because my wife is a nurse so, rather than going to adoctor, she would be somebody that I would talk to first.”–P12 (M, 59, degener-ative disc disease and brain injury)In addition to close friends and family members, participants shared theirHI with other people who had been through similar health experiences. Infact, they believed that their mutual experiences helped them in understand-ing each other and communicate with less effort:“I talk about all kinds of things I’d never talk to my able-bodied friends about,because these people know what our lives are like. Our lives are all different butthey have a commonality that doesn’t exist with able-bodied people.”–P4 (F, 68,C4-C5 quadriplegic)445.2.4 Perceived health statusParticipants developed an overall perception of their health status based ontheir knowledge and perceived control over their health conditions. For in-stance, P19, who suffered from HIV, considered his health condition as yetanother manageable disease that required only few tweaks to his life style.This was mainly because he was completely aware of his condition, its compli-cations, and the necessary ways to control it. Interestingly, participants whoperceived their health status to be “manageable” were found to be less mo-tivated to engage in sharing their HI on SNSs. Moreover, participants whosuffered from chronic pain due to physical injuries and/or arthritis (9/21),considered their health status to be stable and “manageable.” Therefore, theyshowed less interest in using SNSs for sharing their HI with other people. Onthe other hand, P9, who suffered from a rare disease called Neuromyelitis Op-tica (NMO), was heavily engaged in sharing her HI on blogs and SNSs (e.g.,MS society of Canada, Twitter, Facebook). She described a number of reasonsfor her enthusiasm toward sharing her HI online, including but not limited to:helping newly diagnosed patients; finding new information about the disease;and participating in research. Overall, the insufficient scientific knowledgeabout her condition, and the relatively small population of diagnosed patientswith similar condition were also among the reasons that motivated her to ac-tively engage in sharing her HI on SNSs.455.2.5 Perceived privacyDespite their perceived benefits, users’ attitude toward disclosing HI on SNSswas also affected by their need to protect their privacy [32, 40]. By explor-ing users’ HI sharing practices and preferences, we tried to develop a betterunderstanding of the factors that shaped users’ perceived privacy risks whensharing HI on SNSs.The shared HITo minimize the privacy concerns when sharing HI on SNSs, the majority ofparticipants tried to keep their shared information very general, with the leastincluded details about their personal health. Moreover, participants alteredtheir HI sharing behaviors with respect to the audience in different SNSs.For instance, while P11 (M, 40, L3-L4 fusion) shared information about hisback injury/pain with a group of people who suffered from similar injuries onLinkedIn, he tried to maintain his professional image by not posting irrelevantand unprofessional details (e.g., feelings and emotions, certain drug usage).Some participants on the other hand, avoided talking about their health issueson their SNSs because their social peers had not experienced similar healthissues. They felt that their social peers might misread their situation and calljudgments:“I’m not the kind of guy that is just going to throw it out there [Facebook]and get responses from anyone on a medical issue. I think it’s just common sense46like, people judge. People rumour. You don’t want to throw out a bunch of stuffthat’s going to be misconstrued.”–P1 (M, 38, chronic sciatica).It was interesting to see that some participants considered the shared HIinstances to be mostly of abstract nature. Participants believed that the sharedHI contained no important details about them, and therefore, they did notmind sharing it with their social peers. For instance, P2 (M, 59, chronic back-/knee pain) did not mind sharing pictures of himself and his scar on Facebookwhile staying at the hospital after his surgery.Health conditions and associated stigmaParticipants shared general aspects of their health on different SNSs. Morespecifically, information related to physical health conditions (e.g., injuries,chronic pain, arthritis) were considered to be less sensitive than other typesof HI. Participants showed more discomfort when sharing information relatedto their mental health. In fact, the stigma associated with such health issuesstopped them from sharing their HI with specific audiences, especially withpeople whom they knew. Furthermore, we noticed that some male partici-pants were less motivated to talk about their health issues with friends andfamily members on SNSs. They believed that there was a stigma of men talk-ing about their health, especially mental health issues:“It’s just a stigma of men not talking about stuff like that. With you, you’re47a complete stranger and I’ll never see you again probably. So, it’s not that hardfor me to be candid and open about. But with friends, I’m always worried aboutbumping into people I’ve known.”–P20 (M, 50, depression/chronic neck pain)Few female participants were also concerns about sharing information re-lated to their mental health issues on their SNSs. For instance, P5 preferred touse an online website (reddit)2 to anonymously ask questions related to herdepression. She also tried to maintain her privacy by hiding her reddit namefrom her friends. Another way of avoiding the stigma associated with shar-ing information regarding mental health conditions was to engage in onlinediscussions and express feelings and health issues in an indirect manner. Forinstance, P15, who suffered from chronic depression, talked about his men-tal health issues by posting philosophical questions on his blog and Facebookpage. He used these questions as an indirect way to indicate his willingness totalk about his feelings and mental health issues.Anonymity and online identityDespite the concerns and stigma of sharing HI with known people, few partici-pants indicated that the physical distance between them and the people whomthey share their HI with through the SNS would provide them with some levelof privacy. P20 (M, 50, depression/chronic neck pain) for instance did notmind using Facebook to share his health issues with a couple of friends who2 not living in the same city where he lived in. For him, there was verylittle chance of running into those friends on a typical day. Similarly, P16 feltmore comfortable to communicate his health issues with physically distancedpeople through Facebook:“Even if I’m using my real name, it still feels kind of anonymous becausethey’re not right there beside me. I’m not looking at them while I’m talking tothem. They could be in Sydney, Australia.”–P16 (M, 48, post-traumatic stressdisorder)As described by P16, his anonymity was maintained by keeping himselfphysically unreachable. The importance of the physical proximity in defin-ing privacy in the online space was clearly present in participants’ responsesduring the interviews. Participants also raised huge concerns with regards torevealing their physical location in online environments. Regardless of theirhealths status, participants wanted their current and/or future location to bekept strictly confidential.SNSs vulnerabilities and HI misuseA number of participants perceived existing SNSs to be vulnerable to privacyand security exploits and therefore, risking the confidentiality of their infor-mation and increasing the chances of undesirable information disclosure. Ontop of that, few participants were also concerned about the probability of hav-49ing their HI being misused by insurance companies and some governmentalagencies. Participants recited several stories about themselves and other indi-viduals in their social networks that were victims of shared information mis-use. For instance, P7 (M, 54, quadriplegic) was overwhelmed by the attemptsmade by insurance companies towards cutting disability benefits from patientsby misusing their shared information on SNSs.Moreover, both P1 (M, 38, chronic sciatica) and P5 (F, 30, chronic de-pression) raised concerns with respect to sharing specific “risky” informationregarding their health on SNSs, especially if these behaviors were classified asillegal behaviors in different jurisdictions (e.g., licensed drug consumptions).Furthermore, P5 was worried about being denied access to the U.S. if sheshared information about being hospitalized for depression or bi-polar disor-ders. She mentioned knowing over a dozen of stories about people who wereturned away from the U.S. boarders just because they shared similar HI onFacebook.505.2.6 HI Sharing preferencesPreferred user groupsParticipants identified three main user groups, with whom they were willingto share their HI on SNSs:1. Doctors and health professionals. Almost all participants did not mindsharing their HI with their doctors through SNSs. Doctors are the source ofinformation, advice and medical care. Also, they have the knowledge, ex-perience, and the authority to initiate health management decisions [7]. Asa result, having them in any SNS that will be used for HI sharing might beessential for patients.2. Select friends and family members. Participants preferred to keep theirfamily members and friends updated about their overall health status. Moreimportantly, participants indicated their interest in sharing further details oftheir HI with select friends and family members. However, the nature and thelevel of details of the shared HI was totally dependent on the mutual healthrelated experiences and the closeness of their relationships. Participants werealso more open to discuss details of their health issues with those friends andfamily members who had expertise n the medical field.3. Others with similar health conditions and experiences. All partic-ipants valued the importance of having access to a pool of people who hadgone through similar health issues. Due to the mutual experiences, the per-ceived benefits were higher when communicating HI with others who had51gone through similar health experiences. It was also important for partici-pants to consider other mutual factors when deciding to share their HI withother people (e.g., age range, ethnicity, undergone treatments).The SNS environmentOther than the preferred involved user groups, participants also identified anumber of important features for any SNS that would be used for HI sharing.For the majority of participants, it was important to know who owns/operatesthe SNS. Most of the participants (20/21) considered the government and/ortheir doctors’ offices to be the most reliable and trusted entities with theirHI. Moreover, participants did not necessarily trust SNSs that were providedby private companies with their health records, unless recommended by theirdoctors. The ability to maintain an online version of their health records inthe SNS was essential to all participants as well. Nevertheless, participantsrequired to have their health records fully contained in the SNS environment.Participants preferred to keep their health records private and hidden fromother users. In addition, participants required adequate security measures forprotecting their stored data (e.g., using encryption).Communication and HI presentationTo maintain their boundaries while communicating HI with strangers, par-ticipants required having anonymous communication capabilities in the SNS.Anonymity does not necessarily mean hiding all personal information. In fact,the majority of participants did not mind revealing their first name and their52city of residence. However, the anonymity was necessary to maintain privacyby managing the identity and hiding some HI from other social peers. In gen-eral, participants preferred to perform one-to-one communications wheneverthey wanted to discuss details about their health with other social peers. Par-ticipants also indicated their need to maintain the way their HI was viewedby others. For instance, while participants did not want their social peers toview every detail of their HI, they did not mind sharing an aggregate view oftheir HI with those who had similar health conditions (e.g., viewing progressupdates during a course of treatment).5.2.7 Results summaryIn this study, we explored HI sharing practices and privacy preferences onSNSs. We asked chronically ill SNS users about their prior experiences withsharing HI on SNSs. We highlighted the perceived benefits, perceived privacyrisks, and perceived health status as the main factors that influenced users’motivation to share HI on SNSs. In addition, our results indicated that users’perceived benefits and perceived privacy risks were highly related to the recip-ients of the shared HI on SNSs. Moreover, we identified key characteristics ofthe preferred recipients of the shared HI on SNSs (medical expertise level, mu-tual health experiences, strength of social ties). Finally, we discussed generalrequirements for developing a trusted SNS environment that would facilitateHI sharing among social peers (e.g., anonymity, trusted owner/operator, HIcommunication/presentation).53Chapter 6Confirmatory Study: Online Survey6.1 MethodologyIn this user study, we conducted an online survey to confirm our findings fromthe exploratory study. The online survey consisted of a mixture of close- andopen-ended questions. The survey gave us the opportunity to reach a morerepresentative sample of SNSs users, which in return helped in achieving moregeneralizable findings.6.1.1 Why Facebook?Results of our exploratory study indicated that the majority of participantswere active Facebook users (Section 5.2). Facebook is the largest SNS today,consisting of more than a billion active users, with a huge active user popu-lation that goes on Facebook on daily basis.1 As of August 2015, Facebook1 by far the most popular SNS in the US, with 72% of online adultsto use Facebook (62% of all adults in the US) [17]. Furthermore, Facebook isone of the few SNSs that have been extensively studied by social and computerscientists, resulting in a good understanding of how it is generally used andfor what purposes [18, 35, 36].6.1.2 Participants recruitmentParticipants were recruited via Amazon Mechanical Turk (MTurk),2 which is acrowdsourcing website that provides a reliable source of high-quality data forresearch involving human-subjects [50]. A respondent was expected to finishthe survey in less than 30 minutes. To ensure quality data collection and anal-ysis, we used MTurk’s features to recruit highly qualified participants who hadsuccessfully completed 100 tasks or more on MTurk with a minimum approvalrate of 95%. Participants were limited to a single submission only. They werecompensated with $1 (US) through MTurk for successfully completing the sur-vey. To ensure successful compensation on MTurk, participants were requiredto submit a unique code, which was assigned to them after completing thesurvey.6.1.3 Data collectionA total of 537 participants accessed the online survey between October 16–23,2015. A single participant declined to take the survey while 18 other par-2www.mturk.com55ticipants submitted incomplete responses. The average completion time wasapproximately 10 minutes with an overall survey completion rate of 96.5%.Submissions were closely examined considering completion time. All submis-sions that lasted less than 4 minutes were fully examined to ensure quality andvalidity of the provided answers. Finally, to insure consistency of the sampleand avoid the effects of cultural differences, we excluded submissions madefrom people residing outside of the US. The remaining 492 submissions wereincluded in further analysis through the study.6.1.4 Data analysisThe survey was employed on UBC’s online survey tool.3 We used MS Exceland SPSS (Version 23.0) to perform statistical analysis on the data. We alsoused NVivo (Version 10.1) for coding and analyzing qualitative text responseswhenever required. Descriptive statistics were used to explain the underlyingproperties of the collected data (e.g., mean, SD), while a number of inferentialstatistic analysis were used to highlight correlations and significant differencesamong groups (e.g., person’s correlation). A series of between-subjects anal-ysis were used to explore participants’ motivations and perceptions. We usedKruskal-Wallis test for comparing k−independent samples, with post-hoc pair-wise comparisons using Mann-Whitney U tests. We also employed Friedman’stest and/or Wilcoxon signed-rank tests to check for significant differences inparticipants’ responses when repeated measurements were collected from the3www.survey.ubc.ca56same participants (within-subjects).6.1.5 Survey itemsThe survey questionnaire, which is presented in Appendix C.1, consists of thefollowing parts:Demographics and backgroundWe collected general demographic information that were used to characterizedifferent groups of participants (Q.1–Q.5). We also asked participants to iden-tify their IT background and computer experiences (Q.6). Finally, we collectedinformation about participants’ Facebook usage Facebook friends (Q.7–Q.11).Perceived health status and previous HI sharing experiencesWe asked participants’ about their health conditions (Q.12–Q.13). We alsoasked participants to indicate their health status from their point of view(Q.14). Furthermore, we asked participants to indicate their experiences withhealth-related SNSs (Q.15–Q.18). We also surveyed participants’ previous HIsharing experiences on Facebook (Q.19–Q.20). Furthermore, we asked partic-ipants to evaluate their previous HI sharing experiences on Facebook (Q.21–Q.22).Motivation to share HI on FacebookParticipants were asked to indicate their overall willingness to share their HIon Facebook by rating their choice on a 5-points Likert scale (Q.23). We also57asked participants to identify the factors that might motivate or stop themfrom sharing their HI on Facebook (Q.24–Q.25).Preferred recipients of the shared HIParticipants were asked to indicate their motivation to share their HI withdifferent user groups by rating their level of agreement on a 5-points Likertscale (Q.26). We also asked participants to indicate their willingness to use asearch feature to find certain users through Facebook (Q.27).Anonymous online identityWe asked participants to consider an option for creating anonymous onlineidentities and indicate their willingness to use it whenever sharing their HIwith other Facebook users (Q.28–Q.29). Participants were also asked to iden-tify the information items that they were likely to hide if they were to createan anonymous online identity for the purpose of sharing HI on SNSs (Q.30).Trusted SNSs providersWe identified possible SNS providers and asked participants to identify theirlevel of trust in each SNS provider (Q.31). We also ask participants to indicatetheir level of trust in an SNS if it was recommended to them by either a closefriends/family member, friends who had medical expertise, friends who hadmutual health experiences, or their doctors (Q.32).58Attitudes toward privacyWe used the Westin Privacy Index to categorize our participants into threegroups: privacy Fundamentalists, privacy Pragmatists, or privacy Unconcerned.We asked participants to rate their level of agreement on a 4-points Likertscale for the given statements in Q.33 (Appendix C.1). Privacy Fundamental-ists were participants who agreed (strongly or somewhat) with the first state-ment and disagreed (strongly or somewhat) with the second and third state-ments. Privacy Unconcerned were those who disagreed with the first statementand agreed with the second and third statements. The remaining participantswere categorized as privacy Pragmatists [33]. Furthermore, we asked partici-pants to indicate the number of performed privacy-related actions on Facebook(Q.34).6.2 Results6.2.1 DemographicsWe analyzed responses from 492 participants residing in the US with agesranging between 19 and 74 years old (mean=34.7 and σ=10.8). A summaryof participant demographics is presented in Table 6.1. The sample consistedof almost equal number of male and female participants, with a wide rangeof employment categories including Students (32/492) and Unemployed par-ticipants (72/492). While about 75% of our participants were younger than40 years old, almost half of all participants were between 19 and 30 years of59age (46.1%). About 60% of participants completed a post-secondary degree(e.g., Diploma, Bachelor’s, Master’s, or PhD). Approximately 20% of partici-pants indicated having a degree and/or work experience in fields related toComputer/IT. Furthermore, the vast majority of participants (91.1%) spentmore than 2 hours on the Internet on daily basis (mean= 6.5 and σ= 3.4).These demographics reflect the nature of MTurk workers, who were shown tobe highly active internet users with higher education levels and younger agesthan the general population [50].We also asked participants to indicate their Facebook usage and back-ground. About 97% of participants have been on Facebook for at least 4years (mean= 7.7 and σ= 2.3). On average, participants had approximately289 Facebook friends (min = 0,max = 3165).4 The majority of participants(98.8%) were checking their Facebook accounts at least once a week, while84.6% of all participants checked their Facebook on daily basis. Participantswere asked to describe their Facebook friends by selecting all that applies froma list of categories. Family members and relatives, offline friends, colleagues/co-workers, and friends’ friends represented the top four categories as specifiedby participants. A comparison of participants’ Facebook usage frequency andfriends’ demographics with Pew research centre’s recent report shows that oursample is in fact representative of US Facebook users with slightly more activeparticipants, which is typical for MTurk worker [17].4A participant used Facebook only to view certain pages (no added friends).60Table 6.1: Participants demographics (N = 492).Demographic Category Count (%)Gender Male 246 50.0Female 245 49.8Unspecified 1 0.20Age range 19–30 227 46.1(19–74) 31–40 145 29.541–50 62 12.651+ 58 11.8Completed Undergraduate University 208 42.3Education Some college/university courses 136 27.6Graduate University 58 11.8High School 51 10.4Post-secondary diploma 33 6.70Less than High School 3 0.60Other 3 0.60Employment Business, management, or financial 65 13.2Categories Services 62 12.6(Top 5) Computer engineer, IT professional 41 8.30Administrative support 34 6.90Education 33 6.706.2.2 Perceived health statusWe asked participants about their overall health status and existing healthconditions. Only 73 participants (14.8%) did not have any chronic healthconditions while the remaining 419 participants (85.2%) reported 55 different61health conditions. Allergies, anxiety, depression, stress, arthritis and chronicpain, asthma, obesity, diabetes, heart disease, and cancer represented the mostfrequent health conditions reported by participants (Figure 6.1). About onethird of all participants (33.9%) suffered from one chronic health condition,while slightly over half of participants (51.2%) reported two or more chronichealth conditions. Among participants who reported having chronic healthconditions (n=419), the majority (96.9%) reported having the chronic healthcondition(s) for at least two years.Participants were asked to identify their perceived health status on a 4-point Likert scale (“poor”, “fair”, “good”, and “excellent”). A number of studiesshowed that the self-reported health status could be considered as a reason-able indicators of one’s overall health [28, 54]. Despite that, in Section 5.2.1of the exploratory study, we discussed that patients’ perceived health statuscould be influenced by their perceived control over their health conditions. Inline with our previous findings, we noticed that 253 of the online survey par-ticipants (about 51%) had one or more health conditions and yet perceivedtheir health status to be “good” or “excellent” (Figure 6.2). Furthermore, 13participants reported “fair” health status without having any health conditions.By combining the self-reported health status with the reported health con-ditions, we grouped participants into three groups: (1) Healthy (14.8%), indi-viduals who had no chronic health conditions; (2) Manageable (51.4%), indi-viduals who had at least one chronic health condition and perceived “good/ex-cellent” health status; and (3) Unhealthy (33.7%), individuals who had at62least one chronic health condition and perceived “fair/poor” health status (Fig-ure 6.3). We believe that these categories provide a better representation ofparticipants’ overall health, and therefore, we used them for further compari-son of participants’ behaviors according to their health status.36.8%	  34.8%	  28.0%	  18.1%	  14.6%	  13.8%	  11.8%	  4.1%	  3.0%	  2.6%	  1.4%	  1.4%	  1.0%	  0.8%	  0.8%	  0.8%	  0.6%	  0.6%	  0.6%	  0.6%	  0%	   10%	   20%	   30%	   40%	   50%	  Allergies	  Anxiety	  Depression	  Stress	  Arthri<s	  and	  chronic	  pain	  Asthma	  Obesity	  Diabetes	  Heart	  disease	  Cancer	  Ea<ng	  disorder	  Hypertension	  Irritable	  bowel	  syndrome	  Migraine	  Mul<ple	  Sclerosis	  Crohn's	  Autoimmune	  disorder	  COPD	  Chronic	  Fa<gue	  Sjogren's	  Syndrome	  %	  of	  par<cipants	  Figure 6.1: Health conditions cumulative percentage frequency (95%).630	  13	  37	  23	  22	  144	  226	  27	  0	  40	  80	  120	  160	  200	  240	  280	  Poor	   Fair	   Good	   Excellent	  Number	  of	  par?cipants	  No	  health	  condi?ons	   1	  or	  more	  condi?ons	  Figure 6.2: Perceived health status and the number of reported healthconditions.Healthy,	  14.8%	  Manageable,	  51.4%	  Unhealthy,	  33.7%	  Figure 6.3: Categorizing participants according to their perceived healthstatus and the number of health conditions.646.2.3 Attitudes toward privacyWe used the Westin Privacy Index to categorize participants based on theirprivacy attitudes [11, 14, 33]. As shown in Figure 6.4, about 54.3% of ourparticipants were Privacy Fundamentalists, 33.5% were Privacy Pragmatists,and 12.2% were Privacy Unconcerned. Our sampling resulted more PrivacyFundamentalists participants. This might be a result of sampling MTurk work-ers, who were shown to be more privacy-aware and tech-savvy as comparedto the general population [31].To verify the results of the Westin privacy index, we asked participants toreport the number privacy-preserving actions that they performed on Face-book. About 26% of participants performed 10 privacy-preserving actions onFacebook (mean=7.16 and σ=2.63). It was assumed that the privacy Funda-mentalists perform more privacy-preserving actions in the online environmentwhen compared to Pragmatists and Unconcerned. A Spearman’s rank-ordercorrelation showed a negative correlation between the number of performedprivacy-preserving actions and participants’ privacy attitudes, which was sta-tistically significant (r(490) =−0.176, p < 0.001). This however verifies theresults of the Westin privacy index, which identified relatively more numberof privacy fundamentalists in the sample.65Fundamentalists,	  54.3%	  Pragma6cs,	  33.5%	  Unconcerned,	  12.2%	  Figure 6.4: Attitudes toward privacy (Westin Privacy Index).6.2.4 HI sharing experiencesWe asked participants to indicate if they ever shared details of their healthinformation with other people on Facebook. As shown in Figure 6.5, abouthalf of participants (48.6%) never shared their HI with anyone on Facebook.Among the remaining participants, 71.1% indicated sharing their HI detailswith “some close friends or family members”, while 37.9% shared their HIdetails with “select friends who had medical expertise and/or mutual healthexperiences.”6671.1%	  37.9%	  32.8%	  11.5%	  0%	  10%	  20%	  30%	  40%	  50%	  60%	  70%	  80%	  Some	  close	  friends	  or	  family	  members	  Select	  friends	  who	  had	  medical	  experBse	  and/or	  mutual	  health	  experiences	  Everyone	  on	  my	  Facebook	  friends	  list	  Other	  Facebook	  users	  (Non-­‐friends)	  who	  had	  medical	  experBse	  and/or	  mutual	  health	  experiences	  %	  of	  parBcipants	  Figure 6.5: Percentage of participants who shared details of their HI withother user groups on Facebook (n= 253).Furthermore, we asked participants to evaluate their prior HI sharing expe-riences on Facebook (Positive, Negative, Both positive and negative, or Neitherpositive nor negative). Three participants did not provide an evaluation fortheir prior HI sharing experiences on Facebook. Among the remaining 250participants, more than half of them (57.7%) evaluated their prior HI sharingexperience to be Positive, while about 18.2% had Both positive and negativeexperiences. It is interesting to see that only eight participants (3.2%) in-dicated having only Negative experiences, while the remaining participants(19.8%) indicated Neither positive nor negative experiences. We also askedparticipants to explain in their own words why they thought that their experi-67ences were Positive or Negative. Detailed analysis of participants’ responses ispresented in Appendix C.2.57.7%	  19.8%	   18.2%	  3.2%	  0%	  10%	  20%	  30%	  40%	  50%	  60%	  70%	  Posi2ve	   Neither	  posi2ve	  nor	  nega2ve	  Both	  posi2ve	  and	  nega2ve	  Nega2ve	  %	  of	  par2cipants	  Figure 6.6: HI sharing experience evaluation (n= 250).6.2.5 Motivation to share HI on FacebookParticipants were asked to indicate the reasons that motivated them to sharetheir HI details on Facebook by selecting all that applies from a given listof reasons. About 41.7% of participants considered Facebook as a place forseeking social support from friends and family whenever necessary. Aboutthird of participants (33.5%) were motivated to share their HI on Facebookin an exchange for other people’s expertise and experiences. Furthermore,32.3% of participants were motivated to share their HI on Facebook due to68their previous positive experiences. It was also interesting to see that 28.9%of participants were passionate to help others by sharing their own health-related experiences on Facebook. This however conformed with the two-waynature of information sharing on SNSs where some people tend to generateand disseminate content for the rest of the population. Finally, the lack ofknowledge about the health conditions, and the fact that Facebook helpedparticipants in connecting to other people who had similar health issues, werealso among the motivating factors for about 20% of participants.Prior HI sharing experiences on FacebookThe results of the Mann-Whitney U tests showed a statistically significantdifference in participants’ willingness to share HI on Facebook when com-pared based on their prior HI sharing experiences, with mean ranks of 328.3and 160.0 for the two groups respectively (p < 0.001 and large effect sizer = 0.61). This indicates that those who had previously shared their HI onFacebook were more willing to share their HI on Facebook in the future. To in-vestigate further, we used participants’ evaluation of their prior HI sharing ex-periences to group them into the following categories: (1) Positive, those withonly positive experiences; (2) Negative, those with only negative experiences;(3) Both, those with both positive and negative experiences; and (4) Neither,those with neither positive nor negative. A Kruskal-Wallis test followed by a se-ries of pair-wise comparisons using Mann-Whitney U tests showed statisticallysignificant differences for all pair-wise comparisons except when comparing69Both and Neither groups. The results showed that having only positive experi-ences in the past would highly motivate participants to share HI in the future.In addition, participants who had only negative experiences were shown tobe less motivated to share their HI details on Facebook as compared to othergroups.Privacy attitudes and motivation to share HI on FacebookParticipants were grouped based on their privacy attitudes (Fundamentalists,Pragmatists, and Unconcerned). A Kruskal-Wallis test showed a statisticallysignificant difference in willingness to share HI details on Facebook betweenall groups (χ2(2) = 33.42, p < 0.001), with mean ranks of 218.4 for Funda-mentalists, 263.5 for Pragmatists, and 325.1 for Unconcernedparticipants. Thepair-wise comparisons using Mann-Whitney U tests showed significant differ-ences between all three groups, with p≤ 0.001 for all pair-wise comparisons(r1−2 = 0.168, r1−3 = 0.287, and r2−3 = 0.226). Conforming with prior find-ings, privacy Fundamentalists were shown to be less willing to share their HIdetails on Facebook as compared to privacy Pragmatists and privacy Uncon-cerned respectively.Health status and motivation to share HI on FacebookWe conducted a of Kruskal-Wallis test to investigate the effects of health status(Healthy, Manageable, and Unhealthy) on the motivation to share HI on Face-book. The test showed a statistically significant difference in the motivationto share HI details on Facebook among the three groups (χ2(2) = 8.11, p <700.017), with mean ranks of 241.4, 242, and 267.4 respectively. Furthermore,the pair-wise comparisons using Mann-Whitney U tests showed significant dif-ferences in motivation to share HI details on Facebook between Healthy andUnhealthy groups only (p=0.007 and r1−3 =0.176). This conforms with priorfindings that associated online HI seeking/sharing activities with the overallhealth status and the number of health conditions [17, 23, 54]. Moreover, acloser look at the participants who were motivated to share their HI on Face-book showed that the majority of them (about 91%) were classified as eitherUnhealthy or Manageable, which was another good indication of the under-lying correlations between participants’ health status and their motivation toshare HI on Facebook.6.2.6 Preferred recipients of the shared HIWe asked participants to indicate their willingness to share their HI with differ-ent recipients on Facebook. As shown in Figure 6.7, about 67% of participantsconsidered sharing their HI with “some close friends and/or family members,”while about 65% considered sharing their HI with “friends and/or familymembers who had medical expertise and/or mutual health experiences.” Onthe other hand, about 73% of all participants did not consider sharing their HIwith “all their Facebook friends.” Furthermore, about 53% of participants didnot consider sharing their HI with strangers through Facebook, even if thosestrangers had “expertise in the medical field or mutual health experiences.”Within-subjects comparison of the repeated measures showed that partici-71pants were significantly more willing to share their HI with friends and familymembers who had strong social ties. Moreover, while the “closeness” and thestrength of the relationships among friends and family members were shownto influence their motivation to share HI with each other, the presence of “med-ical expertise and/or mutual health experiences” were also considered as im-portant motivating factors that encouraged them toward exchanging their HIon SNSs.0%	   20%	   40%	   60%	   80%	   100%	  All	  my	  Facebook	  friends	  Other	  Facebook	  users	  (Non-­‐friends)	  who	  might	  have	  medical	  experGse	  and/or	  mutual	  health	  experiences	  Friends	  and/or	  family	  members	  who	  might	  have	  medical	  experGse	  and/or	  mutual	  health	  experiences	  Some	  close	  friends	  and/or	  family	  members	  Strongly	  Disagree	   Disagree	  	  	  	   Neutral	  	  	  	  	   Agree	  	  	  	  	  	  	   Strongly	  Agree	  Figure 6.7: Willingness to disclose HI to different recipients on Facebook.To extend our investigation, we compared participants’ willingness to shareHI with different recipients on Facebook.5 For every recipient group, we found5The “All Facebook friends” group was excluded from the pair-wise comparisons since itwas not representing specific recipients.72statistically significant differences in participants’ willingness to share HI whencompared based on their prior HI sharing experiences and privacy attitudes.Our results conformed to participants’ overall motivation to share HI on Face-book. In addition, our test results indicated that Unhealthy participants weresignificantly more willing to share their HI with “non-friends” Facebook usersas compared to Healthy participants (p= 0.007 and r = 0.18). In other words,while participants’ health status was not a determining factor when sharingHI with friends and family members, it significantly influenced participants’motivation to share HI with non-friends Facebook users.6.2.7 Willingness to search for specific usersIn a hypothetical situation, participants were asked to indicate their willing-ness to use customized search features that could help them in finding otherFacebook users who had “mutual health experiences” or “expertise in the med-ical field.” Between 32-29% of all participants were “(Very) Likely” to searchfor Facebook users who had “mutual health experiences” or “medical exper-tise” respectively. On the other hand, about half of all participants were “(Very)Unlikely” to use the search feature for finding other Facebook users.Within-subjects comparison of participants’ willingness to use the searchfeatures for finding different users showed that participants were significantlymore willing to search for other Facebook users who had “mutual health ex-periences” as compared to users who had “expertise in the medical field”(p < 0.001 and r = 0.2). Moreover, the between-subjects tests showed that73participants’ who had positive experiences to be significantly more likely touse the search feature as compared to those who had neither positive nor neg-ative experiences. When comparing participants’ willingness to use the searchfeatures based on their privacy attitudes, we found statistically significant dif-ferences among all groups, with privacy Fundamentalists participants to besignificantly less likely to use the search features as compared to Pragmatistsand Unconcerned.0%	   20%	   40%	   60%	   80%	   100%	  People	  with	  exper4se	  in	  the	  medical	  field	  (e.g.,	  Doctors	  and	  health	  professionals)	  People	  with	  mutual	  health	  experiences	  (e.g.,	  mutual	  health	  condi4ons)	  Very	  Unlikely	   Unlikely	  	  	  	   Neutral	  	  	  	  	   Likely	  	  	  	  	  	   Very	  Likely	  Figure 6.8: Willingness to “search” for specific recipients on Facebook.6.2.8 Anonymous identityWe asked participants to indicate their willingness to use an anonymous on-line identity for sharing their HI on Facebook. About 47% of participants were“(Very) Unlikely” to use an anonymous identity when sharing their HI on Face-book. On the other hand, about 36% of participants were “(Very) Likely” touse an anonymous identity when sharing their HI on Facebook.7424.8%	  22.6%	  16.9%	  25.4%	  10.4%	  0%	  5%	  10%	  15%	  20%	  25%	  30%	  Very	  Unlikely	   Unlikely	   Neutral	   Likely	   Very	  Likely	  %	  of	  par>cipants	  Figure 6.9: Willingness to use an “anonymous” identity for sharing HI onFacebook.A between-subjects comparison of participants’ willingness to use anony-mous identities for sharing HI on Facebook showed that participants who hadIT/Computer knowledge were significantly more willing to use anonymousidentities on Facebook as compared to those who had no IT/Computer knowl-edge (p = 0.036 and small effect size r = 0.1). Furthermore, our results in-dicated that privacy Pragmatists were significantly more willing to use anony-mous identities for sharing their HI on Facebook as compared to Fundamental-ists and Unconcerned participants (p= 0.016 and p= 0.015). Finally, we wereunable to find statistically significant difference in participants’ willingness touse an anonymous identity for sharing HI on Facebook when compared basedon their health status. This means that regardless of participants health status,75their motivation to use an anonymous online identity for sharing HI on Face-book was mainly influenced by their privacy attitudes and their IT/Computerknowledge and experience.Participants were also asked about their willingness to “hide” different in-formation items when creating their anonymous identity that would be usedfor sharing HI with strangers. As shown in Figure 6.10, about 95% of partici-pants were “(Very) Likely” to hide their residential address and phone number.Approximately 90% preferred to hide their current/future location informa-tion, identifiable profile picture, email address, and last name. On the otherhand, slightly over 60% of participants were “(Very) Unlikely” to hide theirgender. It was also interesting to see that about 50% of all participants were“(Very) Unlikely” to hide their health conditions when creating their anony-mous identities.In an effort to reduce the correlated information items presented in Fig-ure 6.10 into fewer meaningful items, we performed principle componentanalysis (PCA). The results of the component analysis indicated that about66% of the cumulative variance was described by selecting three components.We considered an information item to be a part of a component if it had afactor loading of at least 0.6 for the particular component and a factor load-ing under 0.4 for the other components. Moreover, the appropriateness ofthe component analysis was tested using KMO and Bartlett’s tests, which re-sulted statistically significant correlations that were appropriate for using PCA(KMO= 0.87, p< 0.001, d f = 91).760%	   20%	   40%	   60%	   80%	   100%	  Residen/al	  address	  Phone	  number	  Last	  name	  Future	  loca/on	  informa/on	  Email	  address	  Iden/fiable	  profile	  picture	  Current	  loca/on	  informa/on	  Occupa/on	  and	  employment	  City	  where	  I	  live	  First	  name	  Age	  and	  date	  of	  birth	  Hobbies	  and	  interests	  My	  health	  condi/on(s)	  Gender	  Very	  Likely	   Likely	  	  	  	  	  	   Neutral	   Unlikely	  	  	  	   Very	  Unlikely	  Figure 6.10: Willingness to hide different information pieces when cre-ating an “anonymous” identity for the purpose of sharing HI onFacebook.As shown in Table 6.2, twelve information items were grouped into threecomponents, while the remaining two items did not conform to any particularcomponent (occupation and employment, and city of residence). We namedthe identified components as following: (1) Contact and location information,which consisted of information that could be used to directly reach an individ-77ual (e.g., phone number, residential address); (2) Demographic information,which consisted of information that were not identifiable by themselves butcould be used to describe properties of an individual in real life (e.g., age,gender, hobbies); and (3) Identity information, which represented informa-tion that could lead to revealing one’s real identity (e.g., picture, first/lastname). We also created an index variable for each component by averagingparticipants’ rating for every information item within that component.The results in Table 6.2 indicates that considerably more participants were“(Very) Likely” to hide information related to their Contact and location andIdentity, with an average score of 91% and 81% respectively. Demographicinformation on the other hand resulted the least score among all components(average score of 38%), with statistically significantly less number of partici-pants who were likely to hide their demographic information on Facebook ascompared to identity, contact, or location information. It was also interestingto see that “health conditions” were categorized as Demographic information,with about 30% of participants who were likely to hide information related totheir health conditions on Facebook.78Table 6.2: PCA results for different personal information items. The lastcolumn represents the percentage of participants who were likely tohide each information item.ComponentFactorloadingAgreement(%)Contact and location information — 91Phone number 0.87 94Residential address 0.80 95Email address 0.74 89Future location information 0.73 89Current location information 0.72 86Demographic information — 38Gender 0.83 21My health condition(s) 0.80 30Hobbies and interests 0.69 38Age and date of birth 0.62 64Identity information — 81Identifiable profile picture 0.79 87Last name 0.75 89First name 0.72 66Information items that did notconform to any component — —Occupation and employment NA 76City where I live NA 7279Comparing participants based on their privacy attitudes, we found statisti-cally significant differences in participants motivation to hide different infor-mation items with the exception of the following two cases: (1) Pragmatistsand Unconcerned participants’ motivation to hide Contact and location infor-mation, which confirms the relatively higher level of concerns raised by allparticipants toward revealing their Contact and location information; and (2)Fundamentalists and Pragmatists participants’ motivation to hide Demographicinformation, which indicates less concerns toward revealing information re-lated to participants’ demographics. In addition, we found a statistically sig-nificant difference in participants’ motivation to hide Demographic informationwhen compared based on their prior HI sharing experiences (p = 0.003). Thetests results also indicated that participants with Positive experiences in thepast were more willing to reveal their Demographic information as comparedto participants with other experiences (e.g., Negative).6.2.9 Willingness to trust SNSs with HIWe asked participants to indicate their willingness to trust different SNS providerswith their submitted HI. About 27% of all participants trusted an SNS withtheir HI if it was provided by a governmental health authority, while slightlyless than 20% of participants trusted a governmental agency (non-health re-lated) and a recognized private company (Figure 6.11). On the other hand,about 58% of participants did not trust an SNS that was provided by a govern-mental agency (non-health related), which was relatively more than the per-80centage of participants who did not trust other SNS providers. Within-subjectscomparisons showed that significantly more number of participants were will-ing to trust an SNS with their HI if it was provided by a governmental healthagency as compared to other providers.0%	   20%	   40%	   60%	   80%	   100%	  A	  governmental	  agency	  (non-­‐health	  related)	  A	  recognized	  private	  company	  A	  governmental	  health	  authority	  	  (e.g.,	  city,	  state/province,	  federal/naDonal)	  Strongly	  Disagree	   Disagree	  	  	  	   Neutral	  	  	  	  	   Agree	  	  	  	  	  	  	   Strongly	  Agree	  Figure 6.11: Willingness to trust different SNS providers.We also asked participants to indicate their willingness to trust an SNSwith their HI if it was recommended by different people (doctors, friends withmutual health experiences, friends with medical expertise, and close friends/-family members). The results of a Friedman’s test and the post-hoc comparisonusing Wilcoxon signed-rank test showed statistically significant differences inparticipants willingness to trust an SNS with their HI if it was recommendedby their doctors as compared to other people. This however might indicatethe overriding influence of doctors’ recommendations on their patients’ over-all willingness to trust different SNS providers with their shared HI.81Chapter 7Discussion7.1 Motivating factorsOur results indicated that participants’ willingness to disclose HI on Facebookwas mainly influenced by the following factors: (1) prior HI sharing experi-ences; (2) privacy attitudes; (3) perceived health status; and (4) the preferredrecipients of the shared HI.We found that participants’ prior HI sharing experiences had a significantimpact on their willingness to share HI on Facebook, with participants whopreviously shared their HI on Facebook to be more willing to share their HIon Facebook in the future. Furthermore, participants who described theirprior HI sharing experiences to be Positive were significantly more likely todisclose their HI on Facebook as compared to participants who had Negativeexperiences. In addition, we found that Positive HI sharing experiences were82described as online communications with other social peers that resulted someform of benefits (e.g., positive support). Moreover, discussing HI on SNSs cre-ated an opportunity for some users to find other SNS users who had similarhealth experiences. On the other hand, Negative experiences were mainly ex-pressed due to the lack of gained benefits as a result of sharing HI on SNSs.However, participants were also intimidated by the loose control over theirshared HI in the semi-public SNS environments, which in times lead to un-foreseen consequences such as gossips, rumours, and judgments.We used participants’ attitudes toward privacy to classify them into privacyFundamentalists, privacy Pragmatists, and privacy Unconcerned groups [14,33]. Our results showed that privacy Fundamentalists participants performedrelatively more privacy-preserving actions on Facebook as compared to privacyPragmatists and Unconcerned participants. In addition, privacy Fundamental-ists participants were found to be significantly less likely to disclose their HIon Facebook as compared to participants who were classified as privacy Prag-matists or Unconcerned. Our results came in line with findings from previousstudies that discussed the influence of privacy attitudes on users’ overall will-ingness to disclose sensitive personal information to online websites [11, 40].The number of health conditions and the self-reported health status wereused to categorize participants into Healthy, Manageable, and Unhealthy groups.Conforming with previous findings [23, 28, 54], we showed that Unhealthyparticipants, who had one or more health conditions and perceived their healthto be poor/fair, were significantly more likely to disclose their HI on Face-83book as compared to Healthy participants (people with no health conditions).Furthermore, participants with Manageable health status, who had at leastone chronic health condition and perceived their health to be good/excellent,were shown to fall somewhere between Healthy and Manageable participantsin terms of their motivation to share HI on SNSs. In other words, patients’motivation to share HI on SNSs could highly depend on their confidence inthe level of control over their health conditions, with those who had highercontrol to be less motivated to discuss their HI issues with other social peersand vice versa.Our results indicated that despite participants’ health status, they weremore willing to disclose their HI to “friends and/or family members” as com-pared to other Facebook users (e.g., non-friends). Moreover, while the strengthof the relationship among friends and family members increased their willing-ness to share HI with each other, the presence of “medical expertise” or “mu-tual health experiences” were also considered as important motivating factorsthat encouraged them toward exchanging their HI on SNSs. Moreover, whileparticipants were generally less motivated to share their HI with non-friendFacebook users, Unhealthy participants were found to be significantly morewilling to share their HI with non-friend Facebook users who had “medical ex-pertise” or “mutual health experiences” as compared to Healthy participants.This however indicates that having poor health might encourage SNS usersto discuss their health issues with strangers, especially if those strangers hadexpertise in the medical field or if they had mutual health experiences.847.2 Implications for design7.2.1 Search featuresBy exploring participants’ motivation to use a hypothetical search feature forfinding different Facebook users, we found that participants were more willingto search for Facebook users who had mutual health experiences as comparedto users who had expertise in the medical field. Furthermore, while our resultsshowed that users with poor health status (Unhealthy) to be more willing toshare their HI with different user groups, we did not find statistically signifi-cant difference in their willingness to use the search features when comparedto other user groups (Healthy or Manageable). Despite the reasons behindparticipants’ motivation to use the search features, we believe that SNSs canutilize users’ shared HI in order to provide automatic recommendations thatcould facilitate finding the preferred user groups on behalf of users. In fact, ourresults indicated that users were less sensitive toward revealing their healthconditions when creating their online anonymous identity. Therefore, it wouldbe possible for SNSs to utilize such information to perform automatic searchesfor the purpose of recommending Facebook users who had mutual health ex-periences or medical expertise.7.2.2 Anonymous online identityUsing an anonymous online identity to share HI with strangers was consideredto be a preferable option for overcoming privacy concerns [4, 43]. Similarly85in our exploratory study (Section 5), patients considered using anonymousidentities to protect their privacy when talking about their health issues withonline users, especially strangers. We believe that providing the ability toanonymously communicate HI on SNS can encourage SNS users, especiallyprivacy Pragmatists users, to engage in active HI sharing by regaining someof the privacy that was surrendered when users disclosed their HI online. Inorder to maintain anonymity, it is important for users to be able to hide theircontact, location, and identity information from other users. Furthermore,we believe that SNSs can also benefit from patients’ low sensitivity towardsrevealing their health conditions in order to facilitate HI sharing among usersand increase their interactions by offering them an option to use anonymousonline identities whenever needed.7.2.3 Trusted SNS providersInternet users’ trust in web-based service was shown to influence their moti-vation to provide personal information to these online services [13, 24, 54].In the context of sharing HI on SNSs, we identified a number of trusted SNSproviders, among which a “governmental health authority” was identified asthe most trusted SNS provider by participants. Furthermore, we found thatregardless of the SNS provider, participants’ were more likely to trust an SNSwith their HI if it was recommended by their doctors. Keeping that in mind,we believe that SNSs providers, especially those specialized in HI sharing andmanagement, may benefit from doctors as intermediate channels for attract-86ing new users or increasing online interactions of existing users on their sites.This however will require incentivizing, educating, and motivating doctors,which might be a challenging but worthwhile process by itself.87Chapter 8ConclusionsIn this thesis, we quantified HI sharing practices on Facebook and showed thatdespite the raised concerns, a considerable number of users were in fact shar-ing their HI on SNSs. Furthermore, we employed qualitative and quantitativeinstruments to investigate users’ motivation to share HI on Facebook. Ourresults indicate that users’ prior HI sharing experiences, attitudes toward pri-vacy, and perceived health status, are linked to their motivation to share HI.In addition, we identified the key characteristics of the recipients that userspreferred to share their HI with. Armed with such an understanding, we dis-cussed the opportunities of utilizing existing features in order to optimize thegained benefits, while improving users’ privacy when sharing HI. Also, our re-sults indicate that users’ health conditions could be used to facilitate HI shar-ing on Facebook without compromising their online privacy. Finally, by hidingContact and location information, Facebook users’ can maintain some level of88anonymity and privacy when sharing HI with strangers.In summary, this work makes the following main contributions:• provide a better understanding of Facebook users’ HI sharing practices,preferences, and risk perceptions,• identify factors linked to users’ perceived privacy and motivation to shareHI on Facebook, and• suggest design features that could facilitate effective HI sharing amongFacebook users.89Chapter 9Future WorkAs part of future work, we believe that it would be necessary to capture users’actual HI sharing practices on Facebook while examining the influence of theidentified factors on users’ motivation to share HI. Furthermore, by imple-menting and testing the user preferred features (e.g., anonymous identity),we would like to enrich our understanding of the different factors that moti-vate Facebook users’ toward sharing their HI with their social peers. Finally, itis important to examine Facebook users’ HI sharing practices over a reasonableperiod of time in order to capture the influence of their HI sharing experienceson their privacy perceptions and motivation to share HI.90Bibliography[1] CrowdFlower. URL Accessed: April 5, 2016. →pages 18[2] Amazon Mechanical Turk. URL Accessed: April5, 2016. → pages 18, 33[3] Social media “likes” healthcare: From marketing to social business.PwC HRI Social Media Consumer Survey, 2012. URL→ pages 9[4] S. A. Adams. Revisiting the online health information reliability debatein the wake of “web 2.0”: an inter-disciplinary literature and websitereview. International journal of medical informatics, 79(6):391–400,2010. → pages 85[5] I. Altman. Privacy regulation: culturally universal or culturally specific?Journal of Social Issues, 33(3):66–84, 1977. → pages 19[6] S. B. Barnes. A privacy paradox: Social networking in the united states.First Monday, 11(9), 2006. → pages 14[7] T. Bodenheimer, K. 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URL+ → pages1, 7, 1297Appendix ASupplementary Materials for thePreliminary User StudyThe study was reviewed and approved by UBC’s BREB. Participants also re-viewed the recruitment ad before answering the questionnaire on the studywebpage. After reviewing the study related information, participants had tosubmit their information and consent to participate in the study. Note thatwhile the terms “health information” (HI) and “social networking sites” (SNSs)were used throughout the research, the terms “health related information”(HRI) and “online social networks” (OSNs) were used interchangeably to re-fer to the same terms in the first study only (as reflected in the supplementarymaterials in Appendix A).98!Sharing!Health!Related!Information!on!Online!Social!Networks:!Risk!Perceptions!and!Behavioural!Responses!!Introduction:!This!is!an!exploratory!study!to!understand!users’!privacy!risks!perceptions!when!sharing!health!related!information!(HRI)!on!online!social!networks!(OSNs).!Principal!Investigator:!The!principal!investigator!of!this!research!is!Dr.!Konstantin!Beznosov!from!the!Department!of!Electrical!and!Computer!Engineering!at!the!University!of!British!Columbia.!You!can!contact!him!at!!or!(604)!822!9181.!Co5Investigator(s):!Sadegh!Torabi,!Ph.D.!Student!! (!The!coXinvestigator!is!from!the!Department!of!Electrical!and!Computer!Engineering!at!UBC.!You!can!contact!him!at!604!827!3410.!Terms!and!definitions:!In!this!study,!you!will!encounter!a!number!of!terms!that!you!should!be!familiar!with!before!answering!the!questions:!• Health'related'information'(HRI):!It!is!a!general!term!that!refers!to!any!information!that!is!directly!or!indirectly!related!to!one’s!health.!This!information!includes!but!is!not!limited!to!the!following:!diet!related!information,!prescriptions,!exercise!routines,!symptoms,!healthier!life!choice/practices,!mental!or!physical!health!status,!and!chronic!disease!information.!!• Online'social'network'(OSN):!Online!social!networks!are!defined!as!webXbased!services!that!are!used!by!individuals!to!get!in!touch!with!other!online!peers.!The!common!features!of!every!OSN!are!the!ability!for!users!to:!(1)!create!and!maintain!a!profile,!(2)!add/delete!online!peers!and!finally,!(3)!interact!with!online!peers!through!existing!services.!Examples!of!wellXknown!OSNs!are:!Facebook,!Twitter,!LinkedIn,!PatientsLikeMe,!Yahoo!messenger,!Skype,!Instagram,!and!Google+.!!!• Active'OSN'user:!an!active!OSN!user!is!a!person!who!maintains!at!least!one!OSN!profile!and!uses!the!service!to!share/seek!information!with/from!online!peers!on!regular!basis.!!!!   ! ! T H E ! U N I V E R S I T Y ! O F ! B R I T I S H ! C O L U M B I A !!   99!Purpose:!The!purpose!of!the!study!is!to!investigate!OSN!users’!HRI!sharing!behaviour,!along!with!their!perceived!privacy!risks!and!triggered!behavioural!responses!in!the!presence!of!privacy!risks.!!Study!Procedures:!You!will!take!part!in!an!online!survey!about!your!OSN!information!sharing!behaviour,!perceived!privacy!risks!and!corresponding!behavioural!responses.!The!online!survey!will!take!approximately!30!minutes.!During!this!survey,!you!will!be!asked!questions!regarding!your!information!sharing!activities!on!OSNs.!Confidentiality:! !Your!identifiable!information!will!not!be!collected!and!therefore,!your!identity!will!remain!anonymous!throughout!the!study.!All!data!will!be!kept!confidential,!and!your!anonymity!will!be!protected!in!any!reports,!research!papers,!and!presentations!that!result!from!this!study.!Remuneration/Compensation:!We!would!like!to!thank!you!and!inform!you!that!as!a!result!of!participating!in!this!online!survey!study,!you!will!be!compensated!with!the!amount!of!$1!(USD)!through!Amazon!Mechanical!Turk.!Contact!for!information!about!the!study:!If!you!have!any!questions!or!require!further!information!about!the!project!you!may!contact!Sadegh!Torabi!at!+1!604!827!3410.!Contact!for!concerns!about!the!rights!of!research!subjects:!If!you!have!any!concerns!about!your!treatment!or!right!as!a!research!subject,!you!may!contact!the!Research!Subject!Information!Line!in!the!UBC!Office!of!Research!Services!at!604!822!8598!or!eXmail!!Consent:!Your!participation!in!this!study!is!entirely!voluntary!and!you!may!refuse!to!participate!or!withdraw!from!the!study!at!any!time.!By!selecting!the!“Agree”!option!below!you!indicate!the!following:!i) You!are!19!years!and!older,!!ii) You!are!an!Active!OSN!user!who!maintains!at!least!one!OSN!profile!and!uses!the!service!to!share/seek!information!and!connect!to!other!online!peers!regularly,!and!iii) You!have!read!and!understood!the!provided!information,!and!that!you!consent!to!participate!in!this!study![you!can!print!or!save!a!copy!of!this!consent!form!for!your!records].!!!!!Agree! Decline!100A.1 Survey QuestionsA.1.1 Questions About Participants’ Demographics1. Gender:• Male• Female2. How old are you?(19 to 99) years old3. What is your highest level of completed education?• Less than high school• High school (secondary school)• Diploma (post-secondary courses)• Undergraduate university degree (Bachelor’s)• Graduate university degree (Masters’s or PhD)• Community college or professional school (College degree)• Other (please specify)4. Employment category: [Select a category that best fits your current job]• A range of employment categories (e.g., Education, Business, Engi-neering, ...), or101• Other (please specify)5. Current country of residence?• Select from list, or• Other (please specify)A.1.2 Questions About SNS Usage1. How many active SNS profiles do you maintain? [Active accounts arethose which you regularly use to connect to people, share information,and perform online activities]• 1• 2• 3• 4• 5 or more2. For your most frequently used SNS account(s), provide the name of theSNS and specify how regularly do you log into your account. [Informa-tion for at least one SNS is required, you may skip the rest if does notapply]The following questions will be repeated for each specified active SNSaccount:102• SNS name [Select from list, or specify other SNS names]• How regularly do you log into your above SNS account?– Daily– Weekly– Monthly– Every few months– Other• Select the device that you use the most to connect to the specifiedSNS account.– Personal Computer/Laptop/Desktop– Tablet (e.g., iPad)– Smartphone (e.g., iPhone)– Other (please specify)A.1.3 Questions About HI Sharing Behaviours in SNSs1. For each HI category, how often do you share information in SNSs? [Thesurvey presented 8 HI categories with corresponding responses in theform of a 5-point Likert scale with anchor points specified as: never,sometimes, and always]• Refer to Table A.1 for HI categories.1032. Specify other types of HI that you share and do not appear in the abovelist.3. Why do you share your HI in SNSs? [Select all that apply]• Help others by sharing personal experience and knowledge• Get benefits by receiving useful feedback from online contacts• Seek help or social support• Alleviate anxiety (Sharing HI makes me feel better and less stressed)• Seek online interactions and make discussions• Promote healthy living• Other (please specify)4. For HI that you do not share in SNSs, describe your choice by selectingall reasons that apply from below.• I do not want to be treated as “the sick” person by my online con-tacts• I do not want my online contacts to worry about me by receivingbad news about my health• I have different people in my online contact list and I prefer not toshare my HI with all of them• My HI is personal and I do not share it with anyone• I prefer to share my HI with my doctor104• I do not want my online contacts to know about my HI• My online contacts are not interested in my HI• I prefer to share my HI offline• Other (please specify)A.1.4 Questions About Privacy Risk Perceptions andBehavioural Responses1. When sharing HI in SNSs, how much each of the following factors con-tribute to the increase of your perceived privacy risks: [Responses varyon a 5-point Likert scale with anchor points specified as: does not affect,slightly affects, and strongly affects]• The receiver(s) of the HI• HI type and category• The SNS platform where the HI is shared• Your current physical or mental health condition (e.g., depressed,healthy, suffer from chronic pain, etc.)2. For every HI category (Table A.1), how do you evaluate your perceivedprivacy risk level when sharing HI with the given four user categories:• Select individual(s)• Select group(s)• Your entire contact list105• All other SNS users[Select the perceived privacy risk level from a 5-point Likert scale withanchor points: very low (or none), moderate, and extreme]3. “Behavioural responses” refer to different actions undertaken by an in-dividual to mitigate the perceived privacy risks.Assume you want to share some HI in SNS: For each assumed privacyrisk level (very low, acceptable, moderate, high, extreme), what wouldbe your preferred behavioural response(s)? [select all that apply foreach risk level]• Avoid risks by not sharing HI• Minimize risks by manipulating shared HI (e.g., change or removepersonal and identifiable information)• Minimize risks by filtering recipients (e.g., share with specific indi-vidual(s) or group(s))• Minimize risks by changing the used SNS (e.g., share HI in othertrusted SNS)• Accept risks and share HI without any preemptive actions106A.2 Categorization of HI examplesPrior to conducting our survey, we reviewed the literature and found morethan 30 different examples of HI that people often shared online [20, 48].They include but not limited to the following: mental or physical conditions,healthy eating and dietary information, daily exercise routines, experiencewith a specific doctor, previous surgeries, symptoms and side effects, insur-ance company information, useful online articles, information about childrenand elderly family members. We categorized the identified examples of HIsharing according to their similarities and characteristics. To triangulate thecategorization, we used an online card sorting tool (OptimalSort)1 to run aclosed card sorting exercise, where we asked 11 participants, mostly friendsand colleagues, to group different HI examples into the predefined 8 cate-gories. Seven participants grouped over 75% of the HI examples into cate-gories similar to our predefined ones. Participants’ feedback was also incorpo-rated toward refining/rephrasing the HI categories and the given HI examplesin order to avoid further ambiguity in the survey questionnaire and study ma-terials. The finalized HI categories are presented in Table A.1.1www.optimalworkshop.com107Table A.1: HI categories and examples.Category HI ExamplesHealthy livingdietary and healthy eating, physical exercise,mental exerciseOwn experienceexperience with: previous surgeries, treat-ments, and symptomsUseful found information books, articles, websitesMental and emotionalhealth conditionsstressed, excited, depressedPhysical health conditions sick, injured, in good shapeMedical health recordspersonal information and address, physicianinformation, insurance policy, x-rays, reportsExperience of somebodyelseexperience with: previous surgeries, treat-ments, and symptomsHI of people in your custody parents, children, and others108Appendix BSupplementary Materials for theExploratory Study (Interviews)The study was reviewed and approved by UBC’s BREB. Participants also re-viewed the recruitment ad before sending their participation request throughthe study webpage. After reviewing the study related information, participantshad to submit their information and consent to participate in the study.109! Recruitment!page,!v1.2!!!!!29/11/2013!1! Sharing Health Related Information In Online Social Networks The purpose of this exploratory research is to investigate different aspects of sharing health related information (HRI) in online social networks (OSNs). While most people consider HRI to be private and personal in nature, recent studies showed increasing number of users who shared information about their health in OSNs (e.g., Facebook). In fact, sharing HRI is becoming a new application of OSNs. Whether if it is for the gained benefits of sharing HRI, or simply to help others and provide social support, there is a lack of understanding about different aspects of sharing HRI in OSNs. How to participate? Your participation is important for our research. You will be interviewed about your opinions, thoughts, and experiences when using OSNs (e.g., Facebook). If you have one or more chronic health condition(s) (e.g., spinal cord injury), or you are a caregiver who provides healthcare support to an individual with chronic health condition(s), then you can participate in this study by clicking on the “Participate” button below: Compensation: $25 per interview (approximately 1 hour)         * For further inquiries, email us at:  110! Study!Participation!Request!page,!v1.3!!!!!10/01/2014!1"!!Study Participation Request Please review the following information carefully and provide your consent by clicking on "Submit" button at the end of the page   Principal Investigator The principal investigator of this research is Dr. Konstantin Beznosov from the Department of Electrical and Computer Engineering at the University of British Columbia. You can contact him at or (604) 822 9181.  Co-Investigator Sadegh Torabi ( The co-investigator is a PhD student from the Department of Electrical and Computer Engineering at UBC. You can contact him at 604 827 3410.  Purpose The purpose of this exploratory user study is to address the lack of understanding about different aspects of health related information (HRI) in online social networks (OSNs). While most people consider HRI to be private and personal in nature, recent studies showed increasing number of users who shared information about their health in OSNs. In fact, sharing HRI is becoming a new application of OSNs. Whether if it is for the gained benefits of sharing HRI, or simply to help others and provide social support, there is a lack of understanding about the privacy aspects of sharing HRI in OSNs. We will interview individuals with similar health conditions (e.g., spinal cord injury patients) to identify privacy and usability requirements. We will eventually suggest a set of privacy-preserving guidelines that could be used by OSN designers and application developers to enhance HRI sharing experience in OSNs.  Study Procedures In this study, we will collect qualitative data by means of individual interviews. As a person with chronic health condition(s) (e.g., spinal cord injury), or a caregiver who is providing healthcare support for an individual with chronic health condition(s), you will take part in an individual interview about your OSN usage, online information sharing behaviours, health condition and health management activities, perceived privacy risks, and corresponding behavioural responses. The interview will be conducted in a mutually convenient time and location. It will last approximately 60 minutes, and with your permission, it will be audio-recorded and transcribed. The interview will also include the collection of some demographic 111! Study!Participation!Request!page,!v1.3!!!!!10/01/2014!2"information (e.g., age, gender, education, etc.) through a designated online form, or by completing a printed version of the form upon request. A follow-up telephone call or email communication may be necessary to clarify issues arising from the discussion.  Confidentiality      All information will be kept strictly confidential. To ensure complete anonymity, pseudonyms (false names) will be substituted for your real name and the names of anyone else mentioned in the interview discussion. All stored media, transcripts and consent forms will be identified by code and kept in a locked filing cabinet in the project office. The only people that will hear the recorded interviews and/or see the transcripts will be the Principal investigator (Dr. Konstantin Beznosov), the Co-Investigator (Sadegh Torabi), and the transcriptionist. The information gained from this research will be anonymized and written up in publications and/or reports and will be shared with interested parties. You may request copies of these publications or reports about the findings of the study. The recorded interviews will be destroyed 5 years after publication of the original analysis and findings.  Compensation, Benefits, and Potential Risks Your participation is important for our research. As a result of participating in this research, you will be compensated with the amount of $25 (CAD). Also, there might be some other benefits to you as a result of participating in this research, as discussion with others about your thoughts and experiences may help you to clarify your own thinking. Moreover, the outcomes of the study may help increase the awareness and gained knowledge about the studied topic. There might be some potential risks related to involvement in this research. It is possible that some topics discussed in the interview may raise new and/or previous emotional issues but you need only answer questions or express your views when you wish to do so. The investigator(s) will be respectful of your preferences. However, the investigator(s) are not equipped to provide counseling or professional advice.  Contact for information If you have any questions or require further information about the project, you may contact the co-investigator (Sadegh Torabi at +1 604 827 3410). If you have any concerns about your treatment or right as a research subject, you may contact the Research Subject Information Line in the UBC Office of Research Services at 604 822 8598 or e-mail    112! Study!Participation!Request!page,!v1.3!!!!!10/01/2014!3"  Consent It is very important that your participation in this study is entirely voluntary and based on clear understanding. Furthermore, you may refuse to participate or withdraw from the study at any time. By clicking on the “Submit” button below you accept to participate in this study and indicate the following: 1. You are 19 years and older, 2. You are living in the Greater Vancouver region, 3. You maintain at least one active OSN account that you use regularly, 4. You have one or more chronic health conditions (e.g., spinal cord injury), or you are a caregiver who provides healthcare support to an individual with chronic health condition(s), 5. Your participation in this study is entirely voluntary and you may refuse to participate or withdraw from the study at any time without giving a reason and without any negative impact on received benefits and compensation, and 6. You have read and understood the provided information, and you consent to participate in this study [you can print or save a copy of this consent form for your records]. Provide your Name and Contact information and submit your request [Required fields are marked with * ]  By clicking on "Submit" button below, you consent to participate in this study. Your contact information will be recorded and you will be contacted shortly. *"Name: " *"Email: " Phone: "   !113B.1 Interview guide and questionsWill collect qualitative data by means of semi-structured interviews. The inter-view lasted between 60-90 minutes, and were audio-recorded and transcribed.The interviews started by reviewing the consent form and the collection ofdemographic information (age, gender, education, etc.). Then, a number ofresearch-related questions were asked, as shown in the following subsections.A follow-up telephone call or email communication was made when neces-sary to clarify issues arising from the discussion. The interview questions arepresented as following:B.1.1 Health condition background• What is the health condition you have?• How/When did the health condition appeared or started the first time?• How does the health condition affect your daily life?• What are the challenges that you face due to the health condition youhave?• How does the health condition you have affect your social life?• Is there anything specific about your health condition that is of yourconcern?114B.1.2 Health management• How do you manage your health condition?• How others (if any) are involved in your health management process?• What is your relationship with doctors, physicians, and nurses?• Do you have any concerns regarding your health management?B.1.3 SNS usage and background• How many SNS accounts do you maintain?• How often do you log into your SNS accounts and what do you usuallydo there?• Who do you connect to using the SNSs? Who are your online friends?• What do the SNS environments mean to you (e.g., Facebook)?B.1.4 HI sharing on SNSs• Have you ever shared HI in your SNSs? Why?• Whom do you usually share your HI with?• How do you think sharing HI could be helpful/beneficial to you or othersin your social network?• When it comes to sharing HI, do you have specific preferences about thetype of the SNS where you share your HI in? Why?115• How do you think about existing privacy settings in SNSs?B.1.5 A specialized SNSs for managing health conditions• Have you ever considered using an SNS to manage, share, and seek HI?• What do you expect from a specialized SNS that is used to help youmanage your health conditions and get connected to others?• How do you define your privacy?B.1.6 Study related feedbackDo you have any comments, suggestions or concerns related to this study? Weappreciate your constructive feedback?B.2 Supplementary resultsParticipants came with different health issues. Nine participants suffered fromchronic pain and arthritis in different parts of their body. We interviewed twoquadriplegic participants with limited physical mobility, among whom one hadalso suffered from chronic lung and heart diseases. We also interviewed anHIV positive patient, who was infected as a results of an accidental needlepoke while doing his job as a paramedic. Finally, one participant had Neu-romyelitis Optica (NMO), which is a rare disease that attacks the central nervesystem and causes blindness, paralysis, and other health issues. The remainingparticipants suffered from a combination of mental and/or physical illnesses116(e.g., eating disorder and depression, arthritis and lung disease). More detailsabout participants’ health conditions are presented in Table B.1.117Table B.1: Participants demographics and health conditions. The firstcolumn represents participants’ ID.ID Gender Age Health condition(s)P1 M 38 chronic sciatica due to an accidentP2 M 59 back fracture and defective left kneeP3 M 31 severe arthritis in right hand due to a car accidentP4 F 68C4-C5 incomplete quadriplegic due to damagedneck in a sport accidentP5 F 30 chronic depressionP6 F 21 curved spine and chronic back painP7 M 54C5-C6 quadriplegic due to a motor accident, andchronic heart/lung diseaseP8 M 38 chronic back painP9 F 42Neuromyelitis optica (NMO), episodes of blindness,headaches, and fatigueP10 M 37 osteoarthritis (deformed leg) and defective kneeP11 M 40L3-L4 fusion due to a work-related accident andCOPD (lung problem)P12 M 59degenerative disk and brain injury (lost senses ofbalance, taste, and smell)P13 M 51 osteoarthritis in all jointsP14 F 39 eating disorder and post-traumatic stress disorderP15 M 37 bipolar depression and anxietyP16 M 48 post-traumatic stress disorderP17 M 48 arthritis in hands and kneesP18 F 38degenerative arthritis in foot and ankle, anemia,and depressionP19 M 50 HIV due to an accidental needle pokeP20 M 50 depression and chronic pain from broken neckP21 F 35 herniated disks (L4-L5) with chronic pain118Appendix CSupplementary Materials for theConfirmatory Study (OnlineSurvey)The study was reviewed by UBC’s BREB and a certificate of approval wasissued. To take part in the study, participants reviewed the recruitment adthrough MTurk and reviewed the study related information. Participants wererequired to consent to participate in the online survey before answering surveyquestions.119Online&recruitment&flyer&&Version&1&&&204Sept42015&&1& Sharing Health Information on Social Networking Sites  The Department of Electrical and Computer Engineering at University of British Columbia invites participants for a study on health information sharing behaviours on Facebook. We require volunteers to participate in our online survey that takes no more than 30 minutes. All participants will receive the amount of 1 US dollar through Amazon Mechanical Turk. The study requires the participant to satisfy the following conditions: (1) you must be 19 years and older; and (2) you must be an active Facebook user, that is a person who maintains a Facebook profile and uses the service to share/seek information with/from online contacts regularly.  If you would like to participate in this study, please follow the link below:     For further information, please contact us at         &!!The!University!of!British!Columbia! !120! Consent!Form!v2!!!!!!02.Oct.2015!1!Sharing(Health(Information(on(Social(Networking(Sites((University(of(British(Columbia(>(Department(of(Electrical(and(Computer(Engineering)((Introduction:(This( is( a( study( to( understand( users’( perceptions( when( sharing( health(information((HI)(in(social(networking(sites((SNSs).((Principal( Investigator:(The(principal( investigator(of( this( research( is(Dr.(Konstantin(Beznosov(from( the( Department( of( Electrical( and( Computer( Engineering( at( the( University( of( British(Columbia.(You(can(contact(him(at(>Investigator(s):( Sadegh( Torabi,( MSc.( Student( ( The( co>investigator( is(from(the(Department(of(Electrical(and(Computer(Engineering(at(UBC.(You(can(contact(him(at(604(827(3410.((Terms(and(definitions:(In(this(study,(you(will(encounter(a(number(of(terms(that(you(should(be(familiar(with(before(answering(the(questions:((((((Health(information((HI):(It(is(a(general(term(that(refers(to(any(information(that(is(directly(or(indirectly( related( to( one’s( health.( This( information( includes( but( is( not( limited( to( the(following:(diet(related(information,(prescriptions,(exercise(routines,(symptoms,(healthier(life(choice/practices,(mental(or(physical(health(status,(and(chronic(disease(information.((((((((Social(networking(sites((SNSs):(Social(networking(sites(are(defined(as(web>based(services(that(are(used(by(individuals(to(get(in(touch(with(other(online(peers.(The(common(features(of(every(SNSs(are(the(ability(for(users(to:((1)(create(and(maintain(a(profile,((2)(add/delete(online(peers(and(finally,((3)(interact(with(online(peers(through(existing(services.(Examples(of(well>known(SNSs(are:(Facebook,(Twitter,(LinkedIn,(PatientsLikeMe,(and(Google+.((((((((Active(SNS(user:(an(active(SNS(user( is(a(person(who(maintains(at( least(one(SNS(profile(and(uses(the(service(to(share/seek(information(with/from(online(peers(on(regular(basis.(((((Study(Purpose:(The(purpose(of( the(study( is( to( investigate(SNSs(users’(HI( sharing(behaviors,(perceived(benefits,(and(risk(perceptions.((Study( Procedures:( You(will( take( part( in( an( online( survey( about( health( information( sharing(behaviors(in(SNSs.(The(online(survey(will(take(approximately(30(minutes.(During(this(survey,(you( will( be( asked( questions( regarding( your( health( information( sharing( practices( and(preferences( in(SNSs.(You(will(be(also(asked(questions(about(your(health(status(while( listing(any(health(conditions(that(you(currently(have.((Confidentiality:( Your( identifiable( information( will( not( be( collected( and( therefore,( your(identity(will(remain(anonymous(throughout(the(study.(All(data(will(be(kept(confidential,(and(your( anonymity( will( be( protected( in( any( reports,( research( papers,( and( presentations( that(result( from( this( study.( Finally,( this( study( is( a( part( of( a( graduate( study( project( for( Sadegh(Torabi(and(the(results(might(be(used(in(his(final(graduate(thesis.(   ( ( T H E ( U N I V E R S I T Y ( O F ( B R I T I S H ( C O L U M B I A ((   121! Consent!Form!v2!!!!!!02.Oct.2015!2!(Remuneration/Compensation:(We(would(like(to(thank(you(and(inform(you(that(as(a(result(of(participating( in( this( online( survey( study,( you(will( be( compensated(with( the( amount( of( $1((USD)(through(Amazon(Mechanical(Turk.((Contact( for( information( about( the( study:( If( you( have( any( questions( or( require( further(information(about(the(project(you(may(contact(Sadegh(Torabi(at(+1(604(827(3410.((Contact( for( concerns( about( the( rights( of( research( subjects:( If( you( have( any( concerns( or(complaints( about( your( rights( as( a( research( participant( and/or( your( experiences( while(participating(in(this(study,(contact(the(Research(Participant(Complaint(Line(in(the(UBC(Office(of(Research(Ethics(at(604>822>8598(or(if(long(distance(e>mail(>877>822>8598.(!CONSENT(Your( participation( in( this( study( is( entirely( voluntary( and( you(may( refuse( to( participate( or(withdraw(from(the(study(at(any(time.(By(selecting(the(“Agree”(option(below(you(indicate(the(following:((((((• You(are(at(least(19(years(old,((((((• You(maintain(a(Facebook(account(that(you(use(regularly,(and((((• You(have(read(and(understood(the( information(provided(on(previous(page,(and(that(you(consent(to(participate(in(this(study([you(can(print(or(save(a(copy(of(this(consent(form(for(your(records].(! ! Agree!! Decline!(Exit!survey)!!122C.1 Survey questionnaireBy volunteering to take part in this study, participants declare that they are atleast 19 years old and that they maintain an active Facebook profile that theyvisit regularly. To complete the survey, participants were required to answerthe following questions:1. What is your gender?• Male• Female• Decline to answer2. How old are you: [Select from list between 19 and 99]3. What is your highest level of completed education?• Less than High School• High school (secondary school)• Some college/university courses• Diploma (post secondary courses)• Undergraduate University degree (Bachelor’s)• Graduate University degree (Masters’s or PhD)• Other (Please specify)1234. What is your employment category?• Administrative support (e.g., secretary, assistant)• Art, writing, or journalism (e.g., author, reporter)• Business, management, or financial (e.g., manager, accountant,banker)• Computer engineer or IT professional (e.g., systems administrator,programmer, IT consultant)• Education (e.g., teacher)• Engineer in other fields (e.g., civil engineer, bio-engineer)• Legal (e.g., lawyer, law clerk)• Medical (e.g., doctor, nurse, dentist)• Scientist (e.g., researcher, professor)• Service (e.g., retail clerks, server)• Skilled labor (e.g., electrician, plumber, carpenter)• Student• Unemployed• Other (Please specify)5. What is your current country of residence? [Select from the list]• United States of America124• Canada• Afghanistan• ... Additional choices hidden ...• Zimbabwe• Other6. Do you have a college degree or work experience in computer science,software development, web development or similar computer/IT relatedfields?• Yes• No• I don’t know7. Approximately how many hours do you spend on the Internet each day?[Select between 0 and 24 hours]8. When did you start using Facebook? [Select between 2004 and 2016]9. How often do you check your Facebook?• At least once a day• At least once a week• Every month• Less often than every month125• Don’t use it at all10. Please check your Facebook profile and tell us how many friends youhave on Facebook?11. How do you describe your Facebook friends? [Select all that applies]• Family members and relatives• Offline friends (e.g., childhood friends, school friends)• My friends’ friends (online and offline)• Colleagues and co-workers• People whom I met online for the first time (e.g., people with com-mon interests)• Celebrities and public figures• People with specific expertise/profession (e.g., lawyers, doctors,engineers)• Others (please specify)12. Do you currently suffer from any chronic health conditions? [Pleaseselect all that applies]• Allergies• AIDS/ HIV• Asthma126• Heart disease• Stroke• Cancer• Diabetes• Arthritis and chronic pain• Eating disorder• Obesity• Stress• Depression• Anxiety• None• Others (please specify)13. How long have you had the above mentioned health conditions (if any)?• I don’t have any chronic health conditions• Less than a year• About two years• About three years• About four years• More than four years12714. In general, would you say your health is:• Poor• Fair• Good• Excellent15. Have you ever joined health-related social networking sites?• Yes• No• I don’t know16. Why did you join the health-related social networking sites?17. Are you still using the health-related social networking sites?• Yes• No• I don’t know18. If you are not using the health-related social networking site anymore,then why did you decide to do so? [Type "NA" if you are still using thehealth-related social networking sites]12819. Have you ever shared details of your health information with anyone ofthe following people on Facebook? [Select all that applies]• Everyone on my Facebook friends list• Some close friends or family members• Select friends who had medical expertise and/or mutual health ex-periences• Other Facebook users (Non-friends) who had medical expertise and/ormutual health experiences• No one (Never shared my health information with others on Face-book)• Other people (Please specify)20. Why did you share (or didn’t share) your health information on Face-book?21. How do you evaluate your prior experience with sharing your healthinformation on Facebook?• Positive• Negative• Both positive and negative• Neither positive nor negative129• I don’t know or does not apply to me22. What was positive and/or negative about your prior experience of shar-ing your health information on Facebook? [Leave blank if does not applyto you]23. How likely would you share details of your health information with otherpeople on Facebook? [Participants are asked to rate their response on a5-points likert scale with responses varying from “Very Unlikely” to “VeryLikely”]24. What might motivate you to use Facebook for sharing your health infor-mation details with other people? [Please select all that applies]• My previous positive experiences• Lack of knowledge about my health issues (if any)• My passion to help others by sharing my health-related experienceswith them• The need to learn from other people’s expertise and experiences• Facebook provides me with the ability to hide my personal infor-mation and real identity from others• Seeking social support• Facebook can help me find other people with similar health issues130• Facebook helps me to communicate with other people without hav-ing to meet them in real life• Nothing motivates me to share my health information on Facebook• Other (Please specify)25. What might stop you from using Facebook to share your health informa-tion details with other people? [Please select all that applies]• My previous negative experiences• I don’t see any benefits of sharing my health information with oth-ers• I am a healthy person and I do not have anything to say about myhealth• My health issues are personal and I do not want to share them withother people on Facebook• Others don’t understand my health conditions• I don’t have any Facebook friends that have expertise and/or expe-riences in the medical field• I don’t want others to worry about my health• I have different people on my Facebook and I prefer not to talkabout my health to all of them• My health condition(s) are completely manageable131• I don’t like to cry for help or feel week, my friends might misunder-stand me• I don’t feel protected online, my shared information might be mis-used against me• Other (Please specify)26. I would consider sharing my health information details with the follow-ing Facebook users: [For each user group, participants must rate theirresponse on a 5-points likert scale with responses varying from “Stronglydisagree” to “Strongly agree”]• All my Facebook friends• Some close friends and/or family members• Friends and/or family members who might have medical expertiseand/or mutual health experiences• Other Facebook users (Non-friends) who might have medical ex-pertise and/or mutual health experiences27. Facebook provides a “search” feature that can help you in finding peoplewith specific interests, expertise, and/or experiences. Suppose that youhave a chronic health condition, how likely would you use the “search”feature to find people with: [For each user group, participants must ratetheir response on a 5-points likert scale with responses varying from“Very Unlikely” to “Very Likely”]132• Expertise in the medical field (e.g., Doctors, nurses, health profes-sionals)• Mutual health experiences (e.g., people with similar health condi-tions)28. Suppose that Facebook allows you to create an anonymous online iden-tity. How likely would you use an anonymous online identity if you wantto share your health information with other people on Facebook? [Par-ticipants are asked to rate their response on a 5-points likert scale withresponses varying from “Very Unlikely” to “Very Likely”]29. Why would you use (or not use) an anonymous online identity whensharing your health information on Facebook?30. Suppose you want to create an anonymous identity in order to shareyour health information with strangers on Facebook. How likely wouldyou “hide” each of the following personal information? [For each item,participants must rate their response on a 5-points likert scale with re-sponses varying from “Very Unlikely” to “Very Likely”]• First name• Last name• Identifiable profile picture• Residential address133• City where I live• Occupation and employment information• Hobbies and interests• Current location information (e.g., I am in "restaurant name" now)• Future location information (e.g., I will be in "restaurant name" at6 PM)• My health condition(s)• Email address• Phone number• Age and date of birth• Gender31. In general, I would trust a social networking site with my health infor-mation if it is operated/owned by: [For each provider, participants mustrate their response on a 5-points likert scale with responses varying from“Strongly disagree” to “Strongly agree”]• A governmental agency (non-health related)• A governmental health authority (e.g., city, state/province, feder-al/national)• A recognized private company13432. In general, I would trust a social networking site with my health in-formation if it is recommended by: [For each group, participants mustrate their response on a 5-points likert scale with responses varying from“Strongly disagree” to “Strongly agree”]• My close friends and/or family members• Friends who might have medical expertise• Friends who might have mutual health experiences• My doctor(s)33. Please rate your level of agreement with each given statement below [4-points likert scale with the given responses: “Strongly disagree”, “Some-what disagree”, “Somewhat agree”, and “Strongly agree”]• Internet users have lost all control over how personal informationis collected and used by social networking sites• Most social networking sites handle the personal information theycollect about consumers in a proper and confidential way• Existing laws and organizational practices provide a reasonablelevel of protection for internet users’ privacy today34. Have you ever performed any of the following actions on Facebook?[For each action, participants must answer with “Yes”, “No”, or “I don’tknow”]135• Modified the privacy settings to specify the people who can see yourphotos, likes, comments, and other posts• Deleted some shared photos, comments, and/or other posts• Changed profile visibility (profile information that others can see)• Hid your friends’ list from other Facebook friends• Modified the privacy settings to specify the people who can post onyour Timeline• Deleted and/or blocked friends• Refused to provide some profile information or used fake informa-tion because it was too personal or unnecessary• Modified the way people can search your information on Facebook• Hid a specific post from others and shared it only with select friends• Modified the privacy settings to specify the people who can com-ment on and/or like your postsC.2 Supplementary results: Online surveyParticipants’ age distribution and employment categories are presented in Fig-ures C.1 and C.2. Also, Table C.1 presents a list of health-related sites thatwere used by participants (note that these sites were not considered to beSNSs).1360%	  1%	  2%	  3%	  4%	  5%	  6%	  7%	  19	   21	   23	   25	   27	   29	   31	   33	   35	   37	   39	   41	   43	   45	   47	   49	   51	   53	   55	   57	   59	   61	   63	   65	   67	   69	   71	   73	  %	  of	  par1cipants	  Age	  (19-­‐74)	  Figure C.1: Participants’ age distribution.13713.2%	  12.6%	  8.3%	  6.9%	  6.7%	  6.5%	  5.3%	  5.1%	  3.9%	  2.6%	  2.2%	  1.2%	  0%	   5%	   10%	   15%	  Business,	  management,	  or	  financial	  (e.g.,	  manager,	  accountant,	  banker)	  Service	  (e.g.,	  retail	  clerks,	  server)	  Computer	  engineer	  or	  IT	  professional	  (e.g.,	  systems	  administrator,	  programmer,	  IT	  consultant)	  AdministraKve	  support	  (e.g.,	  secretary,	  assistant)	  EducaKon	  (e.g.,	  teacher)	  Student	  Medical	  (e.g.,	  doctor,	  nurse,	  denKst)	  Art,	  wriKng,	  or	  journalism	  (e.g.,	  author,	  reporter)	  Skilled	  labor	  (e.g.,	  electrician,	  plumber,	  carpenter)	  Engineer	  in	  other	  fields	  (e.g.,	  civil	  engineer,	  bio-­‐engineer)	  ScienKst	  (e.g.,	  researcher,	  professor)	  Legal	  (e.g.,	  lawyer,	  law	  clerk)	  %	  of	  par(cipants	  Figure C.2: Participants’ employment categories distribution.138Table C.1: Health-related sites used by participants that are not consid-ered as SNSs.Name/Description Name/DescriptionInsulin Pump forum( Hypothyroid traumatic stress self helpgroupJDRF (T1 Diabetes) (Kids learning)Wrongplanet Inspire ( support group Reddit communitiesWeight Watchers Healthy Brain NetworkIBS Groups ( MS Society ( World ( of Ireland lupus andme (Facebook group)enotalone ( MedHelp ( and negative experiencesWe asked participants to explain in their words why they think their experi-ences were Positive. As presented in Table C.2, a total of 272 text responseswere analyzed and coded to represent participants’ positive experiences. Pos-itive emotional and social support in the form of sympathy, empathy, and139prayers, were identified as the most common positive experiences among par-ticipants. Useful recommendations and advice came second in the list, withparticipants receiving feedback that positively helped them toward managingtheir health conditions. Participants also described their positive experiencesby indicating that Facebook was used as an effective communication channelfor broadcasting information related to their health, while receiving timelyfeedback from other social peers. Furthermore, participants benefitted fromtheir conversations with others in order to bring awareness to their health is-sues and justify their behaviors whenever necessary. By sharing their HI onFacebook, participants were able to find other social peers who had mutualhealth experiences. Communicating with these social peers provided partici-pants with valuable information/experiences while making them feel that theybelong to a group of understandable and easy to communicate people. Finally,the two-way benefits of sharing HI on SNSs was easy to identify by goingthrough participants’ positive experiences in trying to help other people when-ever possible.140Table C.2: Positive HI sharing experience. The first two columns repre-sent the coded category and related sub-categories. The last twocolumns represent the total number/percentage of positive codedevents under each category (272 total references).Category Sub-categoriesCodedevents(%)Positive supportsympathy, empathy, prayers, emotionaland social support107 39Useful recom-mendation andadvicenew medication, alternative medicine,health condition management tips,shared experiences and information re-sources74 27Communicationwith other peersstart conversations, quick/practical wayto broadcast health information, bringattention to health conditions, receivequick feedback, justify behaviors49 18Mutual experi-encesfinding others with similar health is-sues, easy communication, mutual un-derstanding, useful feedback and ad-vice, sense of belonging27 10Two-way bene-fitsothers helped me, I tried helping others 15 6As shown in Table C.3, participants identified a number of reasons for de-scribing their prior HI sharing experiences to be Negative. Participants werefrustrated by the responses they received from their social peers who over-reacted to their health problems and showed overwhelming and unnecessaryconcerns. Participants were also agitated by the social peers who used theirshared HI in order to make judgments, spread rumours, gossip, or partici-141pated in insulting discussions. Furthermore, participants raised some privacyconcerns with respect to discussing their health issues in a semi-public en-vironment lie Facebook, which occasionally led to oversharing their healthinformation without their permissions. Finally, while participants did not ap-preciate the impractical recommendations and advice given to them by somesocial peers, they felt lonely and unimportant when they received no support-/replies from other social peers.Table C.3: Negative HI sharing experience. The first two columns rep-resent the coded category and related sub-categories. The last twocolumns represent the total number/percentage of negative codedevents under each category (86 total references).Category Sub-categoriesCodedevents(%)People don’t un-derstandpeople overreact on health issues, feelpity, create unnecessary worry, provideresponses that may increase anxiety27 31Negative socialimpactgossips, rumours, insulting discussionsand trolls, judgements, condescendingresponses22 26Privacy concernspublic/open environment, people gettoo involved/nosy, over sharing one’shealth information, receive spam/junk17 20Impracticaladviceimpractical recommendations, advice,and information12 14Ignored postno replies to posts, no social support/in-teractions, feel lonely/unimportant8 9142


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