Special Edition HD Explorer: Health Data at CSCW 2016
HDE Team Member Matthew Bietz just returned from the ACM Conference on Computer-Supported Cooperative Work and Social Computing, where he came across many great papers relevant to the work that the HDE Project is conducting, and relevant to the Network (many of them are authored by Network members). Citations and abstracts for most of them are included below.
For those who aren’t familiar with CSCW, its papers are considered equivalent to journal publications. All papers go through a full review process with multiple reviewers and a revision cycle. The final acceptance rate this year was 25%.
Balestra, M., et al. (2016). The Effect of Exposure to Social Annotation on Online Informed Consent Beliefs and Behavior. Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing. San Francisco, California, USA, ACM: 900-912. DOI: http://dx.doi.org/10.1145/2818048.2820012
- In this study we explore the impact of exposure to social annotation, embedded in online consent forms, on individuals’ beliefs and decisions in the context of informed consent. In this controlled between-subjects experiment, participants were presented with an online consent form for a personal genomics study. Individuals were randomly assigned to either a social annotation condition that exposed them to previous users’ comments on-screen, or to a traditional consent form without social input. We compared participants’ perceptions about their consent decision, their trust in the organization seeking the consent, and their actual consent across conditions. While no significant difference was observed between actual consent rates, we found that on average individuals exposed to social annotation felt that their decision was more informed, and furthermore, that the effect of the exposure to social annotation was stronger among users characterized by relatively lower levels of prior privacy preserving behaviors.
- Bisafar, F. I. and A. G. Parker (2016). Confidence & Control: Examining Adolescent Preferences for Technologies that Promote Wellness. Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing. San Francisco, California, USA, ACM: 160-171. DOI: http://dx.doi.org/10.1145/2818048.2820028
- Our work contributes to the growing body of CSCW research examining how technology can encourage wellness. In a 10-week participatory design study, we examined how technology can help teens overcome intra-personal and social barriers to healthy eating and positive relationships (the wellness topics of greatest interest to our participants). Our findings revealed teens’ desire for expressive technology that helps them initiate dialogue, negotiate conflicts, and restrict communication with family, and their desired degree of engagement with tools promoting healthy eating (passively to actively involved in behavior change). Our analysis further yielded crosscutting themes: the importance of examining issues of self-efficacy, locus of control, and socio-ecological context in the design of health technology. We use our findings to contribute new directions for CSCW research: developing a nuanced perspective on the psychology of change, designing for varying levels of self-efficacy and locus of control, and problematizing the persuasive technology research agenda.
- Chancellor, S., et al. (2016). Quantifying and Predicting Mental Illness Severity in Online Pro-Eating Disorder Communities. Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing. San Francisco, California, USA, ACM: 1171-1184. DOI: http://dx.doi.org/10.1145/2818048.2819973
- Social media sites have struggled with the presence of emotional and physical self-injury content. Individuals who share such content are often challenged with severe mental illnesses like eating disorders. We present the first study quantifying levels of mental illness severity (MIS) in social media. We examine a set of users on Instagram who post content on pro-eating disorder tags (26M posts from 100K users). Our novel statistical methodology combines topic modeling and novice/clinician annotations to infer MIS in a user’s content. Alarmingly, we find that proportion of users whose content expresses high MIS have been on the rise since 2012 (13%/year increase). Previous MIS in a user’s content over seven months can predict future risk with 81% accuracy. Our model can also forecast MIS levels up to eight months in the future with performance better than baseline. We discuss the health outcomes and design implications as well as ethical considerations of this line of research.
- Chancellor, S., et al. (2016). #thyghgapp: Instagram Content Moderation and Lexical Variation in Pro-Eating Disorder Communities. Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing. San Francisco, California, USA, ACM: 1201-1213. DOI: http://dx.doi.org/10.1145/2818048.2819963
- Pro-eating disorder (pro-ED) communities on social media encourage the adoption and maintenance of disordered eating habits as acceptable alternative lifestyles rather than threats to health. In particular, the social networking site Instagram has reacted by banning searches on several pro-ED tags and issuing content advisories on others. We pre-sent the first large-scale quantitative study investigating pro-ED communities on Instagram in the aftermath of moderation — our dataset contains 2.5M posts between 2011 and 2014. We find that the pro-ED community has adopted non-standard lexical variations of moderated tags to circumvent these restrictions. In fact, increasingly complex lexical variants have emerged over time. Communities that use lexical variants show increased participation and support of pro-ED (15-30%). Finally, the tags associated with content on these variants express more toxic, self-harm, and vulnerable content. Despite Instagram’s moderation strategies, pro-ED communities are active and thriving. We discuss the effectiveness of content moderation as an intervention for communities of deviant behavior.
- Cho, H. and A. Filippova (2016). Networked Privacy Management in Facebook: A Mixed-Methods and Multinational Study. Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing. San Francisco, California, USA, ACM: 503-514. DOI: http://dx.doi.org/10.1145/2818048.2819996
- Users of social network services (SNSs) have to cope with a new set of privacy challenges because personal information on an SNS is often co-owned and co-managed by various distributed social ties. Using a multi-methods and multinational approach, we investigated Facebook users’ privacy behavior by focusing on how they co-manage private information. Our findings from focus-group interviews (n = 28) and online surveys (n = 299) suggest that Facebook users primarily apply four different practices of privacy management: collaborative strategies, corrective strategies, preventive strategies, and information control. The four dimensions of privacy management display selective relationships with theoretical antecedents (e.g., self-efficacy, collective-efficacy, attitudes, privacy concern), indicating that each behavior is motivated by a different combination of conditions. Implications for research and practice are discussed.
- Choudhury, M. D., et al. (2016). Characterizing Dietary Choices, Nutrition, and Language in Food Deserts via Social Media. Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing. San Francisco, California, USA, ACM: 1157-1170. DOI: http://dx.doi.org/10.1145/2818048.2819956
- Social media has emerged as a promising source of data for public health. This paper examines how these platforms can provide empirical quantitative evidence for understanding dietary choices and nutritional challenges in “food deserts” — Census tracts characterized by poor access to healthy and affordable food. We present a study of 3 million food related posts shared on Instagram, and observe that content from food deserts indicate consumption of food high in fat, cholesterol and sugar; a rate higher by 5-17% compared to non-food desert areas. Further, a topic model analysis reveals the ingestion language of food deserts to bear distinct attributes. Finally, we investigate to what extent Instagram ingestion language is able to infer whether a tract is a food desert. We find that a predictive model that uses ingestion topics, socio-economic and food deprivation status attributes yields high accuracy (>80%) and improves over baseline methods by 6-14%. We discuss the role of social media in helping address inequalities in food access and health.
- Chung, C.-F., et al. (2016). Boundary Negotiating Artifacts in Personal Informatics: Patient-Provider Collaboration with Patient-Generated Data. Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing. San Francisco, California, USA, ACM: 770-786. DOI: http://dx.doi.org/10.1145/2818048.2819926
- Patient-generated data is increasingly common in chronic disease care management. Smartphone applications and wearable sensors help patients more easily collect health information. However, current commercial tools often do not effectively support patients and providers in collaboration surrounding these data. This paper examines patient expectations and current collaboration practices around patient-generated data. We survey 211 patients, interview 18 patients, and re-analyze a dataset of 21 provider interviews. We find that collaboration occurs in every stage of self- tracking and that patients and providers create boundary negotiating artifacts to support the collaboration. Building upon current practices with patient-generated data, we use these theories of patient and provider collaboration to analyze misunderstandings and privacy concerns as well as identify opportunities to better support these collaborations. We reflect on the social nature of patient-provider collaboration to suggest future development of the stage-based model of personal informatics and the theory of boundary negotiating artifacts.
- Gorm, N. and I. Shklovski (2016). Steps, Choices and Moral Accounting: Observations from a Step-Counting Campaign in the Workplace. Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing. San Francisco, California, USA, ACM: 148-159. DOI: http://dx.doi.org/10.1145/2818048.2819944
- Sedentary work is a contributing factor to growing obesity levels worldwide. Research shows that step-counters can offer a way to motivate greater physical mobility. We present an in-situ study of a nation-wide workplace step-counting campaign. Our findings show that in the context of the workplace steps are a socially negotiated quantity and that participation in the campaign has an impact on those who volunteer to participate and those who opt-out. We highlight that specific health promotion initiatives do not operate in a vacuum, but are experienced as one out of many efforts offered to the employees. Using a social ecology lens we illustrate how conceptualizing a step-counting campaign as a health promotion rather than a behavior change effort can have implications for what is construed as success.
- Miller, A. D., et al. (2016). Partners in Care: Design Considerations for Caregivers and Patients During a Hospital Stay. Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing. San Francisco, California, USA, ACM: 756-769. DOI: http://dx.doi.org/10.1145/2818048.2819983
- Informal caregivers, such as close friends and family, play an important role in a hospital patient’s care. Although CSCW researchers have shown the potential for social computing technologies to help patients and their caregivers manage chronic conditions and support health behavior change, few studies focus on caregivers’ role during a multi-day hospital stay. To explore this space, we conducted an interview and observation study of patients and caregivers in the inpatient setting. In this paper, we describe how caregivers and patients coordinate and collaborate to manage patients’ care and wellbeing during a hospital stay. We define and describe five roles caregivers adopt: companion, assistant, representative, navigator, and planner, and show how patients and caregivers negotiate these roles and responsibilities throughout a hospital stay. Finally, we identify key design considerations for technology to support patients and caregivers during a hospital stay.
- Park, K., et al. (2016). Persistent Sharing of Fitness App Status on Twitter. Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing. San Francisco, California, USA, ACM: 184-194. DOI: http://dx.doi.org/10.1145/2818048.2819921
- As the world becomes more digitized and interconnected, information that was once considered to be private such as one’s health status is now being shared publicly. To understand this new phenomenon better, it is crucial to study what types of health information are being shared on social media and why, as well as by whom. In this paper, we study the traits of users who share their personal health and fitness related information on social media by analyzing fitness status updates that MyFitnessPal users have shared via Twitter. We investigate how certain features like user profile, fitness activity, and fitness network in social media can potentially impact the long-term engagement of fitness app users. We also discuss implications of our findings to achieve a better retention of these users and to promote more sharing of their status updates.
- Pater, J. A., et al. (2016). “Hunger Hurts but Starving Works”: Characterizing the Presentation of Eating Disorders Online. Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing. San Francisco, California, USA, ACM: 1185-1200. DOI: http://dx.doi.org/10.1145/2818048.2820030
- Within the CSCW community, little has been done to systematically analyze online eating disorder (ED) user generated content. In this paper, we present the results of a cross-platform content analysis of ED-related posts. We analyze the way that hashtags are used in ad-hoc ED- focused networks and present a comprehensive corpus of ED-terminology that frequently accompanies ED activities online. We provide exemplars of the types of ED-related content found online. Through this characterization of activities, we draw attention to the increasingly important role that these platforms play and how they are used and misappropriated for negative health purposes. We also outline specific challenges associated with researching these types of networks online. CAUTION: This paper includes media that could potentially be a trigger to those dealing with an eating disorder or with other self-injury illnesses. Please use caution when reading, printing, or disseminating this paper.
- Schorch, M., et al. (2016). Designing for Those who are Overlooked: Insider Perspectives on Care Practices and Cooperative Work of Elderly Informal Caregivers. Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing. San Francisco, California, USA, ACM: 787-799. DOI: http://dx.doi.org/10.1145/2818048.2819999
- This paper focuses on the complex and intimate setting of domestic home care. The majority of care for chronically ill people is realized by non-professionals, the relatives, who are often overlooked. Many of these informal caregivers are also elderly and face multiple, seriously demanding challenges in the context of informal care 24/7. In order to support this increasing user group, their cooperative work and coordination adequately, it is essential to gain a better understanding of their care practices and needs. This paper is based on ethnography in ten households in Germany. It combines data from the analysis of participant observations over eight months, interviews and cultural probes. Besides detailed descriptions of two cases, the central features of informal care experience and implications for design are discussed: the self-concept of the caregivers as being care experts, the need for social support, timing issues and coordination with other actors in this field.
- Vitak, J., et al. (2016). Beyond the Belmont Principles: Ethical Challenges, Practices, and Beliefs in the Online Data Research Community. Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing. San Francisco, California, USA, ACM: 941-953. DOI: http://dx.doi.org/10.1145/2818048.2820078
- Pervasive information streams that document people and their routines have been a boon to social computing research. But the ethics of collecting and analyzing available-but potentially sensitive-online data present challenges to researchers. In response to increasing public and scholarly debate over the ethics of online data research, this paper analyzes the current state of practice among researchers using online data. Qualitative and quantitative responses from a survey of 263 online data researchers document beliefs and practices around which social computing researchers are converging, as well as areas of ongoing disagreement. The survey also reveals that these disagreements are not correlated with disciplinary, methodological, or workplace affiliations. The paper concludes by reflecting on changing ethical practices in the digital age, and discusses a set of emergent best practices for ethical social computing research.
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