Publications • Human-Centered Computing • Department of Mathematics and Computer Science

Designing Value-Centered Consent Interfaces: A Mixed-Methods Approach to Support Patient Values in Data-Sharing Decisions

Interface Prototype in Use. (Bild: D. Leimstädtner)

Leimstädtner, David; Sörries, Peter; Müller-Birn, Claudia

ACM (Accepted) | 2025

Appeared in: (Accepted for) Proceedings of the ACM on Human-Computer Interaction, Issue CSCW1

(Accepted) Leimstädtner, D., Sörries, P., Müller-Birn, C. (2025) Designing Value-Centered Consent Interfaces: A Mixed-Methods Approach to Support Patient Values in Data-Sharing Decisions. Proc. ACM Hum.-Comput. Interact., Vol. 10 (CSCW), 41 pages.

In the digital health domain, ethical data collection practices are crucial for ensuring the availability of quality datasets that drive medical advancement. Data donation, allowing patients to share their medical data for secondary research purposes, presents a promising resource for such datasets. Yet, current consent interfaces mediating data-sharing decisions are found to favor data collectors’ values over those of data subjects. Seeking to establish patient-centered data collection practices in digital health, we investigate the design of consent interfaces that support end-users in making value-congruent health data-sharing decisions. Focusing our research efforts on the situated context of health data donation at the psychosomatic unit of a German university hospital, we demonstrate how a human-centered design can ground technology within the perspective of a vulnerable group. We employed an exploratory sequential mixed-method approach consisting of five phases: (1) Participatory workshops elicit patient values, informing the (2) design of a proposed Value- Centered Consent Interface. An (3) online experiment demonstrates our interface element’s effect, increasing value congruence in data-sharing decisions. Our proposed consent user interface design is then adapted to the research context through a (4) co-creation workshop with domain experts and (5) a user evaluation with patients. Our work contributes to recent discourse in CSCW concerning ethical implications of new data practices within their socio-technological context by exploring patient values on medical data-sharing, introducing a novel consent interface leveraging reflection to support value-congruent decision-making, and providing a situated evaluation of the proposed consent interface with patients.

Keywords: Health Data, Values, Decision Support, Consent Interfaces, Data Donation, Electronic Health Records

Advocating Values through Meaningful Participation: Introducing a Method to Elicit and Analyze Values for Enriching Data Donation Practices in Healthcare

Workshop Materials

Sörries, Peter; Leimstädtner, David; Müller-Birn, Claudia

ACM | 2024

Appeared in: Proceedings of the ACM on Human-Computer Interaction, Volume 8, Issue CSCW1

The secondary use of routinely collected patient data made possible by the broad consent form is seen as a prerequisite for developing data-driven health technologies. In Germany, relevant stakeholder groups (e.g., ethics committees and data protection authorities) specified the broad consent form; however, only one group of patient representatives was consulted, which may indicate asymmetries in engagement. This situation informed our research on medical data donation and emphasized foregrounding patient values. Drawing on participatory design, value sensitive design, and emerging research on value-led participation, we propose a method consisting of (1) a workshop concept for participatory value elicitation composed of four carefully coordinated phases and (2) an analysis procedure to examine the empirical data collected. This analysis allowed us to derive design requirements for medical data donation user interfaces. We conducted three workshops with patient advocates of vulnerable groups and patients in residential care of a psychosomatic unit. Our findings provide new directions to improve user interfaces for medical data donation: First, user interfaces need to enhance patients’ reflective thinking about the potential consequences of their data donation; second, a decision facilitator supporting patients’ value-based decision-making (e.g., by providing simple language or tailoring descriptions to patient needs); and finally, a data intermediary relieving patients’ decision-making and giving them control over their data after donation. Moreover, we emphasize the need to increase the use of participatory approaches in health technology development.

Endorsing Values through Participation: Facilitating Workshops for Participatory Value Elicitation in Two Different Contexts to Inform Sociotechnical Designs

Sörries, Peter; Leimstädtner, David; Sperl, Markus; Müller-Birn, Claudia

Bonn: GI | 2023

Appeared in: Mensch und Computer 2023 (MuC ’23) – Workshopband, September 3–6, 2023, Rapperswil, Switzerland.

Legal measures such as the GDPR aim to regulate the collection and use of personal data for scientific or commercial purposes. However, these measures might not be enough to protect individual privacy. Moreover, it is rarely possible for individuals to participate in and contribute to regulatory strategies. Informed by this situation, we were challenged on how responsible data collection can be achieved considering individuals‘ values and needs. Based on our ongoing research in healthcare and urban mobility, we developed a two-step method: first, a workshop concept for participatory values elicitation, and second, an analysis procedure to examine the empirical data collected systematically. Our findings from the workshops show how values can inform sociotechnical designs.

Investigating Responsible Nudge Design for Informed Decision-Making Enabling Transparent and Reflective Decision-Making

Leimstädtner, David; Sörries, Peter; Müller-Birn, Claudia

New York: ACM | 2023

Appeared in: Proceedings of Mensch Und Computer 2023

Consent interfaces are habitually designed to coerce people into sharing the maximum amount of data, rather than making decisions that align with their intentions and privacy attitudes, by leveraging cognitive biases to nudge users toward certain decision outcomes through interface design. Reflection and transparency have been proposed as two design dimensions of a choice architecture constituting a responsible nudge approach capable of counteracting these mechanisms by prompting reflected choice. In a crowdsourced experiment, we evaluate these capabilities of a proposed data-disclosure consent interface design deploying the responsible nudge approach within a realistic setting by exploiting a status quo bias during the sign-up of an online survey platform as a secondary task within a crowdsourcing context. Our results provide insights into a responsible design of consent interfaces, suggesting that prompting reflection significantly decreases the discrepancy between users’ privacy attitudes and decision outcomes. Meanwhile, making the presence of a nudge transparent had no significant effect on its influence. Furthermore, identifying individuals’ attitudes as a significant predictor of privacy behavior provides a promising direction for future research.

Unfolding Values through Systematic Guidance: Conducting a Value-Centered Participatory Workshop for a Patient-Oriented Data Donation

Value Map

Leimstädtner, David; Sörries, Peter; Müller-Birn, Claudia

Gesellschaft für Informatik e.V. | 2022

Appeared in: Mensch und Computer 2022

Routinely collected clinical patient data posits a valuable resource for data-driven medical innovation. Such secondary data use for medical research purposes is dependent on the patient’s consent. To gain an understanding of the patients’ values and needs regarding medical data donations, we developed a participatory workshop method, integrating approaches from value-sensitive and reflective design to explore patients’ values and translate them into hypothet- ical, ideal design solutions. The data gathered in the workshop are used to derive practicable design requirements for patient-oriented data donation technologies. In this paper, we introduce the work- shop process and evaluate its application.

Taking a Value Perspective on Medical Data Donation Through Participatory Workshops

Müller-Birn, Claudia; Leimstädtner, David; Sörries, Peter

Gesellschaft für Informatik e.V. | 2022

Appeared in: Mensch und Computer 2022 - Workshopband

Clinical patient data is a valuable resource for data-driven medical research. However, discussions around personal data privacy highlight the urgency of designing user interfaces that communicate the possibilities and limitations of the data security used when sharing personal health data. To better understand patients’ values regarding medical data sharing, we developed a methodical approach for value-centered participatory workshops. This approach is inspired by two strains, value-sensitive design and reflective design, to reveal values related to a data donation process in the medical field. The data collected in the workshop (the first of three) will be used to derive design recommendations to improve data donation processes.