data governance; health data sharing; transparency; visualization; Informed Consent; Consent Forms; Qualitative Research
Résumé :
[en] BACKGROUND: As consent for data sharing evolves with the digital age, plain-text consent is not the only format in which information can be presented. However, designing a good consent form is highly challenging. The addition of graphics, video, and other mediums to use can vary widely in effectiveness; and improper use can be detrimental to users.
OBJECTIVE: This study aims to explore the expectations and experiences of adults toward consent given in infographic, video, text, newsletter, and comic forms in a health data sharing scenario to better understand the appropriateness of different mediums and identify elements of each medium that most affect engagement with the content.
METHODS: We designed mock consent forms in infographic, video, text, newsletter, and comic versions. Semistructured interviews were conducted with adults who were interviewed about their expectations for consent and were then shown each consent medium and asked about engaging elements across mediums, preferences for consent mediums, and the value of document quality criteria. We transcribed and qualitatively co-coded to identify themes and perform analyses.
RESULTS: We interviewed 24 users and identified different thematic archetypes based on participant goals, such as the Trust Seeker, who considered their own understanding and trust in organizations when making decisions. The infographic was ranked first for enhancing understanding, prioritizing information, and maintaining the proper audience fit for serious consent in health data sharing scenarios. In addition, specific elements such as structure, step-by-step organization, and readability were preferred engaging elements.
CONCLUSIONS: We identified archetypes to better understand user needs and elements that can be targeted to enhance user engagement with consent forms; this can help inform the design of more effective consent in the future. Overall, preferences for mediums are highly contextual, and more research should be done.
Centre de recherche :
Interdisciplinary Centre for Security, Reliability and Trust (SnT) > IRiSC - Socio-Technical Cybersecurity
Disciplines :
Ingénierie, informatique & technologie: Multidisciplinaire, généralités & autres
Auteur, co-auteur :
DOAN, Xengie Cheng ; University of Luxembourg > Interdisciplinary Centre for Security, Reliability and Trust (SNT) > IRiSC
ROSSI, Arianna ; University of Luxembourg > Interdisciplinary Centre for Security, Reliability and Trust > IRiSC > Team Gabriele LENZINI ; LIDER Lab, DIRPOLIS, Scuola Superiore Sant'Anna, Pisa, Italy
Botes, Marietjie ; SnT, University of Luxembourg, Esch-sur-Alzette, Luxembourg ; Department of Medicine, Stellenbosch University, Stellenbosch, South Africa
SELZER, Annika ; Fraunhofer Institute for Secure Information Technology ; ATHENE, National Research Center for Applied Cybersecurity
Co-auteurs externes :
yes
Langue du document :
Anglais
Titre :
Comparing Attitudes Toward Different Consent Mediums: Semistructured Qualitative Study.
Date de publication/diffusion :
30 avril 2024
Titre du périodique :
JMIR Human Factors
eISSN :
2292-9495
Maison d'édition :
JMIR Publications Inc., Canada
Volume/Tome :
11
Peer reviewed :
Peer reviewed vérifié par ORBi
Projet européen :
H2020 - 956562 - LeADS - Legality Attentive Data Scientists
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