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.

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