Heuristics Identified in Health Data–Sharing Preferences of Patients With Cancer: Qualitative Focus Group Study (Preprint)

• DOI: 10.2196/preprints.63155
• Publication Date: 2024-06-19T18:58:20Z
• Authors: Anna Hermansen; Samantha Pollard; Kimberlyn McGrail; Nick Bansback; Dean A Regier
• Keywords: Preprint; Heuristics

<sec> <title>BACKGROUND</title> Evaluating precision medicine outcomes requires access to real-world and clinical trial data that is often siloed. Access based on consent, consent patients’ informed preferences. Data sharing preferences have been studied through heuristic theory, using quantitative experiments. Although rarely employed, qualitative investigations allow for in-depth exploratory study by probing mechanisms behind disclosure behaviors. Exploring decision-making reveals not only the types of heuristics used but also how are related risk-benefit calculus, attitudes, context. </sec> <title>OBJECTIVE</title> This explores cancer patients employ when deciding whether share their research. <title>METHODS</title> We first reviewed literature develop a semi-structured topic guide framework. then conducted focus groups examine health with cancer, living in Canada. Focus group facilitators developed applied lead discussions about data-sharing revealed underlying heuristics. Two analysts coded transcripts Transcripts were analysed thematic analysis. Heuristic instances grouped according constructs determined analyst consensus. <title>RESULTS</title> Three held 19 participants total. Analysis identified 12 intentions support From analysis, we social norms community building expressed altruism; recognition, reputation, authority led (dis)trust certain institutions; need security prompted illusion control transparency heuristics; availability affect influenced attitudes around risk benefit. These relationships all had impacts participants’ data. <title>CONCLUSIONS</title> The findings provide novel understanding decisions may be processing. As consider extent risks benefits, processes influence assessment anticipated outcomes, which result rational, truly consent. shows considering processing designing current opens up opportunity more meaningful realistic interactions complex