School of Communication and Information Faculty & Researcher Works

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https://hdl.handle.net/10125/63419

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Harmonizing Regulatory Regimes for the Governance of Patient-generated Health Data
(2022) Winter, Jenifer Sunrise; Davidson, Elizabeth
Patient-generated health data (PGHD), created and captured from patients via wearable devices and mobile apps, are proliferating outside of clinical settings. Examples include sleep trackers, fitness trackers, continuous glucose monitors, and RFID-enabled implants, with many additional biometric or health surveillance applications in development or envisioned. These data are included in growing stockpiles of personal health data (PHI) being mined for insight by health economists, policy analysts, researchers, and health system organizations. Dominant narratives position these highly personal data as valuable resources to transform healthcare, stimulate innovation in medical research, and engage individuals in their health and healthcare. Large tech companies are also increasingly implicated in these areas, through mobile health application sales and data acquisitions. Given the many possible uses and users for PGHD, ensuring privacy, security, and equity of benefits from PGHD will be challenging. This is due in part to disparate regulatory policies and practices across technology firms, health system organizations, and health researchers. Rapid developments with PGHD technologies and the lack of harmonization between regulatory regimes may render existing safeguards to preserve patient privacy and control over their PGHD ineffective, while also failing to guide PGHD-related innovation in socially desirable directions. Using a policy regime lens to explore these challenges, we examine three existing data protection regimes relevant to PGHD in the United States that are currently in tension with one another: federal and state health-sector laws, regulations on data use and reuse for research and innovation, and industry self-regulation of consumer privacy by large tech companies. We argue that harmonization of these regimes is necessary to meet the challenges of PGHD data governance. We next examine emerging governing instruments, identifying three types of structures (organizational, regulatory, technological/algorithmic), which synergistically could help enact needed regulatory oversight while limiting the friction and economic costs of regulation that may hinder innovation. This policy analysis provides a starting point for further discussions and negotiations among stakeholders and regulators to do so.
IT-based Regulation of Personal Health: Nudging, Mobile Health Apps and Personal Health Data
(2023) Davidson, Elizabeth; Winter, Jenifer Sunrise; Chiasson, Mike
Mobile health applications and devices (“mobile health apps”) are increasingly embedded in organizational programs to regulate the personal health behaviors of individuals and populations. In this paper, we draw on de Vaujany et al.’s (2018) framework for IT-based regulation systems to consider how regulatory outcomes can develop in such settings, in which individual actors have strong agency and regulation is indirect and voluntary. Through an instrumental case of a continuous glucose monitoring system used for self-regulation of diabetes, we examine how IT artifacts become embedded in self- regulation practices, how data generated by these apps are implicated in regulatory feedback loops, and how networks of individual, organizational and technological actors are mobilized in regulatory regimes. We examine how data about bodily states and IT features such as displays and alarms ‘nudge’ individuals towards compliance with expert rules materialized in the IT artifact. We then identify regulatory affordances of mobile health apps for predicting and surveilling personal health. We also theorize how multilevel networks of trifecta of rules, IT artifacts, and practices develop through regulatory episodes as a regulatory lattice, and how social regulation is realized as a result. We conclude by considering the theoretical and practical implications of this analytical approach to investigate IT-based regulation in the open, distributed, and indirect regulatory contexts.
STEM Educational Outreach and Indigenous Culture: (Re)Centering for Design Scholarship
(Taylor & Francis Group, 2021) Canevez, Richard; Maitland, Carleen; Ettayebi, Soundous; Shaw, James; Everson, Charlene
Integrating Indigenous culture into STEM education is a critical process in building pathways to justice and diversifying design. This process serves to (re)center our conceptions of STEM education by challenging strictly Western notions of STEM, representing an opportunity for learning not just in curricular design, but in technological design as well. Postcolonial computing scholars have critically examined design processes, highlighting the dominance of Western knowledge undergirding cross-cultural design. However, such efforts have yet to fully leverage insights from national curricular (re) centering initiatives. We take up this opportunity through a qualitative case study of an educational outreach organization in British Columbia, Canada, a subsidiary of a nation-wide effort in curricular integration of Indigenous and Western STEM material. Applying postcolonial computing thought, we offer enrichments to theory by providing an empirical basis for a) integrating resiliency, b) politicization in design, and c) arguments for (re)centering epistemological authority in computing. These contributions both enrich theory and enhance the practice of cross-cultural design by encouraging and exploring an Indigenous (re)centering of our understanding of both curricular and technological design.
Peace teams in the protest-repression nexus: A sociomaterial perspective of de-escalatory tactics
(Hawaii International Conference on System Sciences, 2022) Canevez, Richard; Winter, Jenifer
Peace teams work in the trenches of demonstration in liberal democracies. When situations between different parties can escalate to violence, they deploy various tactics and tools to de-escalate the situation. Their work navigates a web of institutions and actors, as well as tools that introduce their materiality into de-escalatory practices. Depicting this system stands to highlight how Peace Teams an maximize their capacities both socially and technologically. However, to date there is no cohesive social and material account of Peace Team work. This study adopts a sociomaterial perspective of demonstrations through the eyes of Peace Teams and their de-escalatory tactics, using semi-structured interview and focus groups. We provide theoretical insights about the sociomaterial nature of de-escalation as being a confluence of social and material intra-actions, and argue for bases o ftrust as an underlying mechanism to account for the configuration of particular sociomaterial assemblages as manifest in the protest-repression nexus.
The Expression of Power in ICT's Knowledge Enterprise: An Empirical Illustration of Computing's Colonial Impulse
(Association for Computing Machinery (ACM), 2020) Canevez, Richard; Maitland, Carleen; Ettayebi, Soundous; Shaw, James; Everson, Charlene; Rantanen, Matthew
ICT globalization continues to spread hardware, software, and accompanying technologies, so too does knowledges and trainings on those ICTs. This knowledge migration process has been linked by scholars to a ‘colonial impulse’ inherent in computing as a knowl- edge enterprise, which incorporates into broader colonizing forces. Through simultaneous explorations of dual case studies with a tribal ISP in California and an educational organization that works with indigenous First Nations communities in British Columbia, we depict how power circulates in this process, both empowering and disempowering communities. We then offer a brief argument for the need to foreground methods and approaches to disentangling these contradicting forces.
Media Mistrust and the Meta-Frame: Collective Framing of Police Brutality Evidence Reporting on YouTube
(Association for Education in Journalism and Mass Communication (AEJMC), 2021) Canevez, Richard; Karabelnik, Moshe; Winter, Jenifer
Social media impacts the news media’s role in police accountability. This convergence produces collective framings of police violence-related evidence that requires further attention. Using a frame analysis of news outlets and content analysis of comments on YouTube, we identify frames, responses, and the collective framing that results from this converging environment. Our findings suggest a triumvirate of competing frames around police brutality, with mistrust of media complicating the role news media plays in accountability.
"Start with where you are": The View of Indigenizing STEM Curriculum from Educational Outreach
(The 6th International STEM in Education Conference, 2021-07) Canevez, Richard; Shaw, James; Ettayebi, Soundous; Everson, Charlene
As educational institutions in Canada respond to the Truth and Reconciliation Commission’s 2015 “Calls-to-Action” by exploring what it means to “indigenize” curriculum, the process is complex and requires contributions from multiple angles of education, including informal education. This is particularly important for STEM education, where the exclusivity of western-centric notions of science and technology must be re-evaluated to provide a more culturally-aware offering. The unique position of informal education programs like educational outreach provides a unique outlook that offers lessons that formal education can benefit from. To explore this unique position in indigenizing, we use a qualitative study with Geering Up, a STEM educational outreach program at the University of British Columbia, and members of K’omoks First Nation on nearby Vancouver Island. We conducted semi-structured interviews with 10 members of Geering Up and 4 members of K’omoks First Nation, and identified themes that ought to inform how educators and scholars consider the foundations of indigenizing curriculum and education in general, particularly the value of sharing. We explore its potential as the foundation of a broad framework for indigenizing curriculum in a way that scales from one community’s perspective to multiple in a way that is respectful, and accounts for the significant time, energy, and human resource commitment involved in these practices.
Native American Cultural Identity through Imagery: An Activity Theory Approach to Image-Power
(Association for Computing Machinery, 2017-11) Caneba, Richard; Maitland, Carleen; Trauth, Eileen
The American Indian and Alaska Native (AIAN) community stands poised to take control of their cultural imagery and image-power through image-heavy social media platforms. Extant research demon- strates the high level of use of social media in AIAN communities, creating the opportunity to overcome negative representation by mass media in the past. However, despite evidence of social media use for cultural preservation, little is known about the exact ways in which image-power is managed. This exploratory study seeks to illuminate the ways in which advocates are presenting imagery, using a qualitative image analysis of advocates’ Instagram posts. Using an Activity Theory framework, particularly the construct of division of labor, we identify a novel taxonomy of imagery cate- gories and advocate roles. The roles, namely Informing, Rallying, Identifying, and Interacting, contribute to our understanding of the relationship between AIAN advocates and imagery, and the mediat- ing effects image-heavy social media platforms and advocate roles have on this relationship. Our findings also contribute to scholar- ship applying Activity Theory in the study of online communities. In particular, our findings delineate roles among material sharers within the construct of Division of Labor.
Fostering Information and Communication Technology Literacy: Insights from Telecommunications Services
(Miami University, 2007) Winter, Jenifer S.
Rapid growth of information and communication technologies and an increasingly complex global environment have brought about the need for information and communication technology (ICT) literacy, the ability to effectively use information technology and critically evaluate its role in society. This paper presents a strategy for increasing ICT literacy at the undergraduate collegiate level and discusses the results of employing this technique in a technical, elective course in the School of Communications at the University of Hawai‘i at Mānoa for six semesters. Comparison of baseline and end-of-semester written assignments demonstrated an increased ability to consider multiple perspectives, gather and provide supporting evidence for assessments, and evaluate complex real-life situations involving ICTs. The author presents this strategy as a useful example that might be adopted or modified for use in a variety of college-level courses.
Public Involvement in Technology Policy: Focus on the Pervasive Computing Environment
(Association for Computing Machinery, 2006) Winter, Jenifer
This paper examines the role of the general public in informing technology policy, observing that public involvement often occurs only through the electoral process or via feedback after plans have been implemented. Planners and policymakers are not necessarily in touch with the feelings and desires of the public who will be affected by their decisions. For this reason, it is important to seek a clearer understanding of the views of citizens who are not typically involved in the planning or design process in order to guide the evolution of technology, as well as to highlight areas where there may be some discrepancy between planners and the needs of everyday users. To broaden the inputs into discussion of emerging problems related to pervasive computing in the State of Hawaii, both information and communication technology specialists (including government policy makers) and members of the general population were invited to participate in a multi-phase study. Differences in perception between specialists and the general public were identified in all phases of research. Specialists were identified as being more focused on near-term issues related to barriers affecting the growth of high-technology industries within the State. Non-specialists showed greater concern for “human” issues, including issues related to the control of technology. Importantly, both groups independently described a need for increased public participation in the process of technological development. Analysis also revealed that both groups found the problem statements generated by non-specialists to be valuable contributions, arguing for their inclusion in the process of problem identification and further supporting the use of participatory planning methods.

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