How Interactive Visualizations Compare to Ethical Frameworks as Stand-Alone Ethics Learning Tools for Health Researchers and Professionals.

BACKGROUND: Despite the bourgeoning of digital tools for bioethics research, education, and engagement, little research has empirically investigated the impact of interactive visualizations as a way to translate ethical frameworks and guidelines. To date, most frameworks take the format of text-only documents that outline and offer ethical guidance on specific contexts. This study's goal was to determine whether an interactive-visual format supports frameworks in transferring ethical knowledge by improving learning, deliberation, and user experience. METHODS: An experimental comparative study was conducted with a pre-, mid-, and post-test design using the online survey platform Qualtrics. Participants were university based early-stage health researchers who were randomly assigned to either the control condition (text-only document) or the experimental condition (interactive-visual). The primary outcome variables were learning, (measured using a questionnaire), deliberation (using cases studies) and user experience (measured using the SED/UD Scale). Analysis was conducted using descriptive statistics and mixed-effects linear regression. RESULTS: Of the 80 participants, 44 (55%) used the text-only document and 36 (45%) used the interactive-visual. Results of the knowledge-test scores showed a statistically significant difference between participants' post-test scores, indicating that the interactive-visual format better supported understanding, acquisition, and application of the framework's knowledge. Findings from the case studies showed both formats supported ethical deliberation. Results further indicated the interactive-visual provided an overall better episodic and remembered user experience compared with the text-only document. CONCLUSIONS: Our findings show that ethical frameworks formatted with interactive and visual qualities provide a more pleasing user experience and are effective formats for ethics learning and deliberation. These findings have implications for practitioners developing and deploying ethical frameworks and guidelines (e.g., in educational or employee-onboarding settings), in that the knowledge generated can lead to more effective dissemination practices of normative guidelines and health data ethics concepts.

Benefits, challenges, and contributors to success for national eHealth systems implementation: a scoping review.

OBJECTIVE: Our scoping review aims to assess what legal, ethical, and socio-technical factors contribute to or inhibit the success of national eHealth system implementations. In addition, our review seeks to describe the characteristics and benefits of eHealth systems. MATERIALS AND METHODS: We conducted a scoping review of literature published in English between January 2000 and 2020 using a keyword search on 5 databases: PubMed, Scopus, Web of Science, IEEEXplore, and ProQuest. After removal of duplicates, abstract screening, and full-text filtering, 86 articles were included from 8276 search results. RESULTS: We identified 17 stakeholder groups, 6 eHealth Systems areas, and 15 types of legal regimes and standards. In-depth textual analysis revealed challenges mainly in implementation, followed by ethico-legal and data-related aspects. Key factors influencing success include promoting trust of the system, ensuring wider acceptance among users, reconciling the system with legal requirements, and ensuring an adaptable technical platform. DISCUSSION: Results revealed support for decentralized implementations because they carry less implementation and engagement challenges than centralized ones. Simultaneously, due to decentralized systems' interoperability issues, federated implementations (with a set of national standards) might be preferable. CONCLUSION: This study identifies the primary socio-technical, legal, and ethical factors that challenge and contribute to the success of eHealth system implementations. This study also describes the complexities and characteristics of existing eHealth implementation programs, and suggests guidance for resolving the identified challenges.

Qualitative analysis of visual risk communication on twitter during the Covid-19 pandemic.

BACKGROUND: The Covid-19 pandemic is characterized by uncertainty and constant change, forcing governments and health authorities to ramp up risk communication efforts. Consequently, visuality and social media platforms like Twitter have come to play a vital role in disseminating prevention messages widely. Yet to date, only little is known about what characterizes visual risk communication during the Covid-19 pandemic. To address this gap in the literature, this study's objective was to determine how visual risk communication was used on Twitter to promote the World Health Organisations (WHO) recommended preventative behaviours and how this communication changed over time. METHODS: We sourced Twitter's 500 most retweeted Covid-19 messages for each month from January-October 2020 using Crowdbreaks. For inclusion, tweets had to have visuals, be in English, come from verified accounts, and contain one of the keywords 'covid19', 'coronavirus', 'corona', or 'covid'. Following a retrospective approach, we then performed a qualitative content analysis of the 616 tweets meeting inclusion criteria. RESULTS: Our results show communication dynamics changed over the course of the pandemic. At the start, most retweeted preventative messages came from the media and health and government institutions, but overall, personal accounts with many followers (51.3%) predominated, and their tweets had the highest spread (10.0%, i.e., retweet count divided by followers). Messages used mostly photographs and images were found to be rich with information. 78.1% of Tweets contained 1-2 preventative messages, whereby 'stay home' and 'wear a mask' frequented most. Although more tweets used health loss framing, health gain messages spread more. CONCLUSION: Our findings can inform the didactics of future crisis communication. The results underscore the value of engaging individuals, particularly influencers, as advocates to spread health risk messages and promote solidarity. Further, our findings on the visual characteristic of the most retweeted tweets highlight factors that health and government organisations should consider when creating visual health messages for Twitter. However, that more tweets used the emotive medium of photographs often combined with health loss framing raises concerns about persuasive tactics. More research is needed to understand the implications of framing and its impact on public perceptions and behaviours.

Digital contact-tracing during the Covid-19 pandemic: An analysis of newspaper coverage in Germany, Austria, and Switzerland.

Governments around the globe have started to develop and deploy digital contact tracing apps to gain control over the spread of the novel coronavirus (Covid-19). The appropriateness and usefulness of these technologies as a containment measure have since sparked political and academic discussions globally. The present paper contributes to this debate through an exploration of how the national daily newspapers in Germany, Austria, and Switzerland reported on the development and adoption of digital contact-tracing apps during early and after stages of the lockdown. These countries were among the first in Europe to develop apps and were critical voices in the debate of decentralized vs. centralized data processing. We conducted thematic analysis on news coverage published between January and May 2020 in high-circulation national daily newspapers from Germany, Austria, and Switzerland. A total of 148 articles from nine newspaper companies were included in the final analysis. From our analysis emerged six core themes of the development and adoption of digital contact tracing apps: 1) data governance; 2) role of IT giants; 3) scientific rigor; 4) voluntariness; 5) functional efficacy; 6) role of the app. These results shed light on the different facets of discussion regarding digital contact tracing as portrayed in German-speaking media. This study complements emerging survey data on public perceptions of digital contact tracing apps by providing a better understanding of the ideas circulating in the media ecosystem.

Digital tools against COVID-19: taxonomy, ethical challenges, and navigation aid.

Data collection and processing via digital public health technologies are being promoted worldwide by governments and private companies as strategic remedies for mitigating the COVID-19 pandemic and loosening lockdown measures. However, the ethical and legal boundaries of deploying digital tools for disease surveillance and control purposes are unclear, and a rapidly evolving debate has emerged globally around the promises and risks of mobilising digital tools for public health. To help scientists and policy makers to navigate technological and ethical uncertainty, we present a typology of the primary digital public health applications that are in use. These include proximity and contact tracing, symptom monitoring, quarantine control, and flow modelling. For each, we discuss context-specific risks, cross-sectional issues, and ethical concerns. Finally, recognising the need for practical guidance, we propose a navigation aid for policy makers and other decision makers for the ethical development and use of digital public health tools.

Visualizing an Ethics Framework: A Method to Create Interactive Knowledge Visualizations From Health Policy Documents.

BACKGROUND: Data have become an essential factor in driving health research and are key to the development of personalized and precision medicine. Primary and secondary use of personal data holds significant potential for research; however, it also introduces a new set of challenges around consent processes, privacy, and data sharing. Research institutions have issued ethical guidelines to address challenges and ensure responsible data processing and data sharing. However, ethical guidelines directed at researchers and medical professionals are often complex; require readers who are familiar with specific terminology; and can be hard to understand for people without sufficient background knowledge in legislation, research, and data processing practices. OBJECTIVE: This study aimed to visually represent an ethics framework to make its content more accessible to its stakeholders. More generally, we wanted to explore the potential of visualizing policy documents to combat and prevent research misconduct by improving the capacity of actors in health research to handle data responsibly. METHODS: We used a mixed methods approach based on knowledge visualization with 3 sequential steps: qualitative content analysis (open and axial coding, among others); visualizing the knowledge structure, which resulted from the previous step; and adding interactive functionality to access information using rapid prototyping. RESULTS: Through our iterative methodology, we developed a tool that allows users to explore an ethics framework for data sharing through an interactive visualization. Our results represent an approach that can make policy documents easier to understand and, therefore, more applicable in practice. CONCLUSIONS: Meaningful communication and understanding each other remain a challenge in various areas of health care and medicine. We contribute to advancing communication practices through the introduction of knowledge visualization to bioethics to offer a novel way to tackle this relevant issue.

Experiences of Donating Personal Data to Mental Health Research: An Explorative Anthropological Study.

Technological developments, such as the advent of social networking sites, apps, and tracking 'cookies', enable the generation and collection of unprecedented quantities of rich personal and behavioural data, opening up a vast new resource for mental health research. Despite these non-traditional health-related data already forming a vital foundation of many new research avenues, little analysis has been done focusing on the experiences, motivations, and concerns of the individuals already engaged in data sharing and donation practices. This explorative study aims to investigate the experiences of individuals voluntarily donating their data to mental health research, specifically through the open data initiative OurDataHelps.org, which aims to develop effective suicide prevention tools. Qualitative semi-structured interviews and participant observation were used on a small sample of participants, yielding 3 key findings: (1) The relationship between participants and their data traces fluctuated between unconscious agency and hyper awareness through curatorship. (2) Despite having concerns about privacy and surveillance, participants were driven by altruistic motivations to engage with health researchers valued by their community, in the hope that their personal information could be of some benefit to future avenues of research. (3) In most cases represented in this sample group, motivation was found to stem from personal experiences with mental health, suicide, and loss. In the suicide survivor community, the experience of data donation is often valued as a method for emotional processing of a loss, connecting with the experiences of others, or as a way of regaining a sense of 'purpose'. By understanding the motivations of individual participants, future projects can ensure that data donation processes are a positive experience and ultimately, increase and sustain the huge potential resources for health researchers worldwide.