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Heuristics and health data : a qualitative study of cancer patients' data sharing preferences Hermansen, Anna

Abstract

Introduction: To advance the evaluation of precision oncology requires greater access to currently siloed patient data. The infrastructure supporting this access rests on patient consent, and as a result must be responsive to patients’ considerations when deciding whether to share their data. Data sharing considerations have been studied by researchers through the lens of heuristic theory, but heuristics have not been studied in the health data sharing context. This thesis addresses this gap, exploring how cancer patients employ heuristics when assessing the risks and benefits of sharing their data with researchers. Methods: We conducted a qualitative investigation of the data sharing preferences of cancer patients and survivors in Canada. A semi-structured question guide led the groups through discussions of opinions, anecdotes, and preferences that revealed underlying heuristic processes. Transcripts were analyzed using a codebook developed from a literature review on data sharing heuristics. Heuristic instances were connected to related attitudes and intentions to share and were then grouped in decision-making themes. Results: We ran three focus groups with 19 participants in total. We identified 12 heuristics underlying their preferences and intentions for data sharing, and 17 attitudes related to these heuristics. We generated four themes that reflect patterns of heuristic processing: (1) altruism as a social rule, (2) trust as a measure of legitimacy, (3) gaining power and security through control, and (4) framing risk and benefit through personal experiences. A cross-cutting interpretation of these themes highlighted the influence that certain attitudes and heuristics have across different decision preferences and patterns of cancer patients. Discussion: The findings revealed new relationships between heuristics and well-known preferences for data sharing. Our study provides a novel perspective on the preferences influencing health data sharing decisions and how they may sometimes be based on heuristic as opposed to rational processing. Further research can expand on this, testing actual behaviour patterns and validating the influence of heuristics on decision-making. These findings implicate the design and communication of data sharing infrastructure by recognizing the role that non-deliberative, intuitive processes play in a cancer patient’s assessment of risk and benefit when making data-sharing decisions.

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Attribution-NonCommercial-NoDerivatives 4.0 International