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Shaping the future of sharing genomic data : Analysis of previously collected clinical requirements

Shymbolatova, Amira (2025) Shaping the future of sharing genomic data : Analysis of previously collected clinical requirements.

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Abstract:This study investigates the alignment of the genomic data-sharing platform requirements between the theoretical expectation and clinical practice. It proposes a theoretical framework on the “work-as-imagined” and “work-as-done” for the evaluation of functional and non-functional requirements derived from a systematic literature review. We evaluated the set of requirements through a mixed-method approach. First, a quantitative survey (Nclin = 30) assessed the perceived importance and agreement on the 62 system requirements. Second, we conducted a thematic analysis of the requirements mapped through a workshop (N = 36). Results from the survey revealed that 91.9% of requirements were both rated as important and agreed upon, demonstrating strong validation of the theoretical model. However, several technical and visualization-related elements, such as data organization methods and graphical presentation of results presented disagreement. Despite the perceived importance, which indicates the variability in relevance to clinical practice. The qualitative findings provided further in-depth insights by highlighting infrastructural, ethical, and usability barriers, especially regarding federated computing, privacy, and user-centred design. Experts emphasized the lack of intuitive interfaces, challenges in accessing the data, and the need for platforms to better align with clinical workflow. Key inconsistencies, such as usability and implementation, underscore the necessity of adapting the model to actual clinical contexts and institutional restrictions, even if the model was extensively validated. Beyond its empirical findings, this study brings methodological contribution by including an exploratory clustering analysis to capture the requirements derived from unstructured data. It offers a reproducible framework for evaluating stakeholder perspectives toward the software design by the combined use of different analytical approaches, such as quantitative requirements, consensus analysis, and exploratory clustering. Additionally, this research contributes to the theoretical advancement of mental models in platform design and offers actionable guidance for developing clinically meaningful, secure, and interoperable genomic data-sharing systems.
Item Type:Essay (Bachelor)
Faculty:BMS: Behavioural, Management and Social Sciences
Subject:77 psychology
Programme:Psychology BSc (56604)
Link to this item:https://purl.utwente.nl/essays/107105
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