Enhancing citizens trust in technologies for data donation in clinical research: validation of a design prototype

Maus, Benjamin; Salvi, Dario

doi:10.1145/3423423.3423430

Cited by 4 publications

(1 citation statement)

References 20 publications

(17 reference statements)

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“…A few studies (3/31, 9.7%) suggested providing participants considered to be “high information seekers” with the option or ability to drill down on information elements within a consent form (ie, supplementary information and click to expand) [ 44 , 49 , 65 ]. Information elements deemed most important to participants included the purpose of the proposed initiative, duration of the study, permitted uses and access, data handling and control, safeguards and security measures, and the risks and benefits of consenting [ 49 , 60 , 65 , 97 , 98 ].…”

Section: Resultsmentioning

confidence: 99%

Patient Perspectives and Preferences for Consent in the Digital Health Context: State-of-the-art Literature Review

Kassam¹,

Ilkina²,

Kemp³

et al. 2023

J Med Internet Res

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Background The increasing integration of digital health tools into care may result in a greater flow of personal health information (PHI) between patients and providers. Although privacy legislation governs how entities may collect, use, or share PHI, such legislation has not kept pace with digital health innovations, resulting in a lack of guidance on implementing meaningful consent. Understanding patient perspectives when implementing meaningful consent is critical to ensure that it meets their needs. Consent for research in the context of digital health is limited. Objective This state-of-the-art review aimed to understand the current state of research as it relates to patient perspectives on digital health consent. Its objectives were to explore what is known about the patient perspective and experience with digital health consent and provide recommendations on designing and implementing digital health consent based on the findings. Methods A structured literature search was developed and deployed in 4 electronic databases—MEDLINE, IEEE Xplore, Scopus, and Web of Science—for articles published after January 2010. The initial literature search was conducted in March 2021 and updated in March 2022. Articles were eligible for inclusion if they discussed electronic consent or consent, focused on the patient perspective or preference, and were related to digital health or digital PHI. Data were extracted using an extraction template and analyzed using qualitative content analysis. Results In total, 75 articles were included for analysis. Most studies were published within the last 5 years (58/75, 77%) and conducted in a clinical care context (33/75, 44%) and in the United States (48/75, 64%). Most studies aimed to understand participants’ willingness to share PHI (25/75, 33%) and participants’ perceived usability and comprehension of an electronic consent notice (25/75, 33%). More than half (40/75, 53%) of the studies did not describe the type of consent model used. The broad open consent model was the most explored (11/75, 15%). Of the 75 studies, 68 (91%) found that participants were willing to provide consent; however, their consent behaviors and preferences were context-dependent. Common patient consent requirements included clear and digestible information detailing who can access PHI, for what purpose their PHI will be used, and how privacy will be ensured. Conclusions There is growing interest in understanding the patient perspective on digital health consent in the context of providing clinical care. There is evidence suggesting that many patients are willing to consent for various purposes, especially when there is greater transparency on how the PHI is used and oversight mechanisms are in place. Providing this transparency is critical for fostering trust in digital health tools and the innovative uses of data to optimize health and system outcomes.

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Section: Resultsmentioning

confidence: 99%

Patient Perspectives and Preferences for Consent in the Digital Health Context: State-of-the-art Literature Review

Kassam¹,

Ilkina²,

Kemp³

et al. 2023

J Med Internet Res

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Beyond data transactions: a framework for meaningfully informed data donation

Gomez Ortega,

Bourgeois,

Hutiri

et al. 2023

AI & Soc

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As we navigate physical (e.g., supermarket) and digital (e.g., social media) systems, we generate personal data about our behavior. Researchers and designers increasingly rely on this data and appeal to several approaches to collect it. One of these is data donation, which encourages people to voluntarily transfer their (personal) data collected by external parties to a specific cause. One of the central pillars of data donation is informed consent, meaning people should be adequately informed about what and how their data will be used. However, can we be adequately informed when it comes to donating our data when many times we don’t even know it is being collected and, even more so, what exactly is being collected? In this paper, we investigate how to foster (personal) data literacy and increase donors’ understanding of their data. We introduce a Research through Design approach where we define a data donation journey in the context of speech records, data collected by Google Assistant. Based on the data donation experiences of 22 donors, we propose a data donation framework that understands and approaches data donation as an encompassing process with mutual benefit for donors and researchers. Our framework supports a donation process that dynamically and iteratively engages donors in exploring and understanding their data and invites them to (re)evaluate and (re)assess their participation. Through this process, donors increase their data literacy and are empowered to give meaningfully informed consent.

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“It’s Not What We Were Trying to Get At, but I Think Maybe It Should Be”: Learning How to Do Trauma-Informed Design with a Data Donation Platform for Online Dating Sexual Violence

Zheng,

Walquist,

Datey

et al. 2024

Proceedings of the CHI Conference on Human Factors in Computing Systems

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Enhancing citizens trust in technologies for data donation in clinical research: validation of a design prototype

Cited by 4 publications

References 20 publications

Patient Perspectives and Preferences for Consent in the Digital Health Context: State-of-the-art Literature Review

Patient Perspectives and Preferences for Consent in the Digital Health Context: State-of-the-art Literature Review

Beyond data transactions: a framework for meaningfully informed data donation

“It’s Not What We Were Trying to Get At, but I Think Maybe It Should Be”: Learning How to Do Trauma-Informed Design with a Data Donation Platform for Online Dating Sexual Violence

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