Trust, Identity, Privacy, and Security Considerations For Designing a Peer Data Sharing Platform Between People Living With HIV

Resulting from treatment advances, the Human Immunodeficiency Virus(HIV) is now a long-term condition, and digital solutions are being developed to support people living with HIV in self-management. Sharing their health data with their peers may support self-management, but the trust, identity, privacy and security (TIPS) considerations of people living with HIV remain underexplored. Working with a peer researcher who is expert in the lived experience of HIV, we interviewed 26 people living with HIV in the United Kingdom (UK) to investigate how to design a peer data sharing platform. We also conducted rating activities with participants to capture their atitudes towards sharing personal data. Our mixed methods study showed that participants were highly sophisticated in their understanding of trust and in their requirements for robust privacy and security. Tey indicated willingness to share digital identity atributes, including gender, age, medical history, health and well-being data, but not details that could reveal their personal identity. Participants called for TIPS measures to foster and to sustain responsible data sharing within their community. Tese findings can inform the development of trustworthy and secure digital platforms that enable people living with HIV to share data with their peers and provide insights for researchers who wish to facilitate data sharing in other communities with stigmatised health conditions

Trust, Identity, Privacy, and Security Considerations for Designing a Peer Data Sharing Platform Between People Living With HIV

Resulting from treatment advances, the Human Immunodeficiency Virus (HIV) is now a long-term condition, and digital solutions are being developed to support people living with HIV in self-management. Sharing their health data with their peers may support self-management, but the trust, identity, privacy and security (TIPS) considerations of people living with HIV remain underexplored. Working with a peer researcher who is expert in the lived experience of HIV, we interviewed 26 people living with HIV in the United Kingdom (UK) to investigate how to design a peer data sharing platform. We also conducted rating activities with participants to capture their attitudes towards sharing personal data. Our mixed methods study showed that participants were highly sophisticated in their understanding of trust and in their requirements for robust privacy and security. They indicated willingness to share digital identity attributes, including gender, age, medical history, health and well-being data, but not details that could reveal their personal identity. Participants called for TIPS measures to foster and to sustain responsible data sharing within their community. These findings can inform the development of trustworthy and secure digital platforms that enable people living with HIV to share data with their peers and provide insights for researchers who wish to facilitate data sharing in other communities with stigmatised health conditions

Changing my life one step at a time – using the Twelve Step program as design inspiration for long term lifestyle change

To explore how people manage and maintain life style change, we conducted interviews with eight members of different Twelve Step Fellowships with 2-23 years of recovery about how they maintain and develop their recovery in everyday life. They reported how identification, sharing, and routines are keys to recovery. Our lessons for design concerns how these concepts support recovery in a long term perspective: Sharing to contribute in a broader sense to the fellowship and to serve as an example for fellow members created motivation even after 20 years of recovery; reflecting over routines in recovery was essential since life is constantly changing and routines need to fit into everyday life; concrete gestures were helpful for some of the abstract parts of the recovery work, such as letting go of troubling issues. Design aimed to support maintenance of lifestyle change needs to open up for ways of sharing that allow users to contribute their experiences in ways that create motivation, and support users in reflecting over their routines rather than prompting them on what to do

A Social Ecological Approach Towards Empowering Foster Youth to be Safer Online

Teens in foster care are some of the most vulnerable youth to encounter serious offline risks, such as sex trafficking. Research shows that children who are vulnerable offline are more likely to be vulnerable online. Therefore, it is important to understand how the internet plays a role in how foster youth are exposed to these risks, so that we may develop effective interventions that empower foster youth against becoming victims of these online risks. A comprehensive review of the literature (Chapter 2) emphasized the unique sets of characteristics and challenges of foster youth that create substantial nuance and require a deeper understanding beyond that of the general population. As such, my dissertation takes on a social ecological approach to adolescent online safety for foster youth by including the following three studies: 1) an interview study with 32 caseworkers that investigates how case managers work with foster families to address concerns of online safety (Chapter 3), 2) an interview study with 29 foster parents that examines how they mediate foster teens\u27 (ages 13-17) technology use at home and the types of risks the teens encounter online (Chapter 4), and 3) co-design sessions with 20 youth and semi-structured interviews with 13 parents to develop best practices for conducting research related to adolescent online risk behaviors, specifically those sexual in nature (Chapter 5). Our findings confirmed that online safety is a great challenge within foster families, particularly as it relates to sexual risks (e.g., unsafe sexual interactions with strangers). Further, case managers and foster parents do not receive the necessary training or guidance to handle situations related to online safety which prevents them from providing the appropriate resources to foster youth. Finally, our research highlighted the importance of focusing ethical practices beyond risk mitigation to protecting youth (e.g., providing help resources, like national crisis hotlines, during our studies could help teens navigate online risks independently)

Supporting Relationships with Video Chat

Video chat is often called the “closest thing to being there”, but anyone who has used video chat to maintain personal relationships or collaborate with others knows that video chat is not the same as face-to-face interaction. In this thesis, I focus on understanding how video chat can be most effectively designed and used to support relationships, helping to bridge the communication gap for distance separated people. An important difference between video chat and face-to-face interaction is potential effects of seeing oneself. In this thesis, I present two studies exploring this important caveat to supporting relationships remotely. The first study shows that the dominant interface design (which shows one’s own video feed) has measurable effects on people’s experiences and conversations in VMC. The second study focuses on a specific group of people—those with social anxiety—who may be particularly affected by self-view in video chat interfaces. This study shows that interfaces that focus on content (much like the media sharing system presented in this thesis) have the potential to minimize effects of feedback in video chat. Another key difference between video chat and face-to-face interaction is the difficulty of engaging in shared activities. Colocated friends or family members can easily share activities such as walks, movies, or board games; distance separated people have a much harder time doing the same. The work presented in this thesis introduces a synchronous media sharing system that can serve as a powerful tool for maintaining relationships. Building on this work, I show that synchronous media sharing is also useful for creating new relationships as well. Together, the system and studies presented in this thesis provide valuable new insights and techniques for the development of video chat tools that support new and sustained relationships over a distance

THE DEVELOPMENT OF GUIDELINES FOR DESIGNING DIGITAL MEDIA TO ENGAGE VISITORS WITH NON-VISIBLE OUTDOOR HERITAGE

This PhD investigates the role of digital media in optimising visitor engagement with non-visible outdoor heritage. Motivated by concerns that digital media products developed for the heritage sector might not be reaching their potential to enrich the visit experience and concerned about a lack of clarity as to what constitutes visitor engagement; this thesis proposes guidance for the production of interpretive digital media and a framework for visitor engagement. Cultural heritage sites featured in this study are characteristically outdoor locations; frequently non-stewarded with very little tangible evidence of the historical or cultural relevance of the site. The unique potential of digital media products to address the specific challenges of engaging visitors with invisible heritage in these locations is discussed within this thesis. The practice of interpreting heritage is investigated to identify the processes, stages, experiences and behavioural states associated with a high level of engagement. Visitor engagement is defined in this study as being a transformational experience in which the visitor’s emotional and/or cognitive relationship with the heritage is altered. This is achieved when the visitor sufficiently experiences appropriate states of engagement across all stages of the visitor engagement framework. This study proposes guidance to advise and support heritage professionals and their associated designers in the design, development and implementation of interpretive digital media products. Within this guide sits the engagement framework which proposes a framework for engagement, defining the stages (process) and the states (experiences and behaviours) of visitor engagement with cultural heritage. In using this resource the cultural heritage practitioner can be confident of their capacity to run and deliver interpretive digital media projects regardless of their expertise in design or technology. This thesis proposes that well designed interpretive digital media can optimise the engagement of visitors in ways which cannot be achieved by any other single method of interpretation. This PhD contributes a design guide and an engagement framework to the existing field of knowledge regarding interpretive digital design

Self-Organizing Teams in Online Work Settings

As the volume and complexity of distributed online work increases, the collaboration among people who have never worked together in the past is becoming increasingly necessary. Recent research has proposed algorithms to maximize the performance of such teams by grouping workers according to a set of predefined decision criteria. This approach micro-manages workers, who have no say in the team formation process. Depriving users of control over who they will work with stifles creativity, causes psychological discomfort and results in less-than-optimal collaboration results. In this work, we propose an alternative model, called Self-Organizing Teams (SOTs), which relies on the crowd of online workers itself to organize into effective teams. Supported but not guided by an algorithm, SOTs are a new human-centered computational structure, which enables participants to control, correct and guide the output of their collaboration as a collective. Experimental results, comparing SOTs to two benchmarks that do not offer user agency over the collaboration, reveal that participants in the SOTs condition produce results of higher quality and report higher teamwork satisfaction. We also find that, similarly to machine learning-based self-organization, human SOTs exhibit emergent collective properties, including the presence of an objective function and the tendency to form more distinct clusters of compatible teammates

Virtual smarts - optimizing the coalescing of people for collective action within urban communities

Despite the importance of individuals coming together for social group-activities (e.g., pick-up volleyball), the process by which such groups coalesce is poorly understood, and as a consequence is poorly supported by technology. This is despite the emergence of Event-Based Social Network (EBSN) technologies that are specifically designed to assist group coalescing for social activities. Existing theories focus on group development in terms of norms and types, rather than the processes involved in initial group coalescence. This dissertation addresses this gap in the literature through four studies focusing on understanding the coalescing process for interest-based group activities within urban environments and a design of a mobile user interface aimed at increasing collective action initiation. Study One examined how well people\u27s needs for social group activity engagement are being met in the context of an urban university. The analysis of 60 interviews highlighted how participants considered activity leadership a burden, where it took too much time and was difficult to find others. Study Two (a mixed methods study of 763 Meetup.com groups in the NY/NJ/CT Tri-State) and Study Three (A survey of 511 students at an urban university) corroborated results that attendance and participation at the first meeting determined long-term success by giving the organizer belief that their group would be successful. Study Four involved the design and testing of a mobile group coalescing user-interface (UI) that featured several lightweight coalescing features hypothesized to reduce the challenges to organizing. Results from the 2000 participant study indicated that the UI increased the likelihood non-leaders would initiate collective action. The models generated from the study data suggested that a new theory is required to understand the role of critical mass in collective action. The combination of these investigations into interest-based group activity coalescing uncovered important gaps in the current knowledge of interest-based group activity coalescing and collective action initiation. This work extends our knowledge about how to improve coalescing support and encourage non-leaders to initiate activity coalescing, which will lead to a greater number of activities forming. Finally, this research uncovers the need to redefine collective action and critical mass models to include motivation to organize and its moderators

A Content Analysis: Examining Facebook Comments on News Media Posts For Echo Chambers

Social media serves as a way for people to connect. People can choose who they connect with, this can cause echo chambers to appear online and can also cause in/out groups to become present. This thesis will examine echo chambers and in/out groups using a content analysis of comments on news media posts on Facebook. The two issues being examined are abortion and immigration. We will be looking at three news media pages: Fox News, MSNBC, and ABC News. What the content analysis will seek out to find is that the partisan news sources Fox News and MSNBC will have echo chambers of information and will attack a person of the out-group if they comment. These echo chambers and in/out-group behaviors could lead to other problems such as polarization