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.

Foregrounding Values through Public Participation: Eliciting Values of Citizens in the Context of Mobility Data Donation

Value Scenario

Sörries, Peter; Franzen, Daniel; Sperl, Markus; Müller-Birn, Claudia

New York: ACM | 2023

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

Citizen science (CS) projects are conducted with interested volunteers and have already shown promise for large-scale scientific research. However, CS tends to cultivate the sharing of large amounts of data. Towards this, our research aims to understand better citizens‘ potential privacy concerns in such participation formats. We, therefore, investigate how meaningful public participation can be facilitated to foreground citizens‘ values regarding mobility data donation in CS. In this regard, we developed a two-step method: (1) a workshop concept for participatory value elicitation and (2) an analysis procedure to examine the empirical data collected systematically. Our findings based on three workshops provide new directions for improving data donation practices in CS.

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.

Coding IxD: Enabling Interdisciplinary Education by Sparking Reflection

"Aux Synesthesia"

Sörries, Peter; Glaser, Judith; Müller-Birn, Claudia; Ness, Thomas; Zwick, Carola

arXiv.org | 2022

Appeared in: EduCHI ’22: 4th Annual Symposium on HCI Education

Educating students from diverse disciplinary backgrounds is challenging. In this article, we report on our interdisciplinary course coding interaction and design (Coding IxD), which is designed for computer science and design students alike. This course has been developed over several years by consciously deliberating on existing hurdles within the educational concept. First, we motivate the need for Coding IxD and introduce the teaching principles that helped shape the course's general structure. Our teaching principles materialize in four method-based phases derived from research through design. Each phase consists of several methods that emerged to be suitable in an interdisciplinary context. Then, based on two selected student projects, we exemplify how interdisciplinary teams can arrive at novel interactive prototypes. We conclude by reflecting on our teaching practice as essential for a meaningful learning experience.

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.

Collaborative Speculations on Future Themes for Participatory Design in Germany

Co-Authored-by Linke, Diane; Sörries, Peter and Müller-Birn, Claudia

De Gruyter | 2022

Appeared in: i-com

Participatory Design means recognizing that those who will be affected by a future technology should have an active say in its creation. Yet, despite continuous interest in involving people as future users and consumers into designing novel and innovative future technology, participatory approaches in technology design remain relatively underdeveloped in the German HCI community. This article brings together the diversity of voices, domains, perspectives, approaches, and methods that collectively shape Participatory Design in Germany. In the following, we (1) outline our understanding of participatory practice and how it is different from mere user involvement; (2) reflect current issues of participatory and fair technology design within the German Participatory Design community; and (3) discuss tensions relevant to the field, that we expect to arise in the future, and which we derived from our 2021 workshop through a speculative method. We contribute an introduction and an overview of current themes and a speculative outlook on future issues of Participatory Design in Germany. It is meant to inform, provoke, inspire and, ultimately, invite participation within the wider Computer Science community.

Am I Private and If So, how Many? Communicating Privacy Guarantees of Differential Privacy with Risk Communication Formats

Overview and composition of the seven privacy risk notifications.

Franzen, Daniel; Nunez von Voigt, Saskia; Sörries, Peter; Tschorsch, Florian; Müller-Birn, Claudia

New York: ACM | 2022

Appeared in: Proceedings of the 2022 ACM SIGSAC Conference on Computer and Communications Security

Every day, we have to decide multiple times, whether and how much personal data we allow to be collected. This decision is not trivial, since there are many legitimate and important purposes for data collection, for examples, the analysis of mobility data to improve urban traffic and transportation. However, often the collected data can reveal sensitive information about individuals. Recently visited locations can, for example, reveal information about political or religious views or even about an individual's health. Privacy-preserving technologies, such as differential privacy (DP), can be employed to protect the privacy of individuals and, furthermore, provide mathematically sound guarantees on the maximum privacy risk. However, they can only support informed privacy decisions, if individuals understand the provided privacy guarantees. This article proposes a novel approach for communicating privacy guarantees to support individuals in their privacy decisions when sharing data. For this, we adopt risk communication formats from the medical domain in conjunction with a model for privacy guarantees of DP to create quantitative privacy risk notifications. We conducted a crowd-sourced study with 343 participants to evaluate how well our notifications conveyed the privacy risk information and how confident participants were about their own understanding of the privacy risk. Our findings suggest that these new notifications can communicate the objective information similarly well to currently used qualitative notifications, but left individuals less confident in their understanding. We also discovered that several of our notifications and the currently used qualitative notification disadvantage individuals with low numeracy: these individuals appear overconfident compared to their actual understanding of the associated privacy risks and are, therefore, less likely to seek the needed additional information before an informed decision. The promising results allow for multiple directions in future research, for example, adding visual aids or tailoring privacy risk communication to characteristics of the individuals.

"Am I Private and If So, how Many?" -- Using Risk Communication Formats for Making Differential Privacy Understandable

"Am I Private and If So, how Many?"

Franzen, Daniel; Nunez von Voigt, Saskia; Sörries, Peter; Tschorsch, Florian; Müller-Birn, Claudia

arXiv.org | 2022

Mobility data is essential for cities and communities to identify areas for necessary improvement. Data collected by mobility providers already contains all the information necessary, but privacy of the individuals needs to be preserved. Differential privacy (DP) defines a mathematical property which guarantees that certain limits of privacy are preserved while sharing such data, but its functionality and privacy protection are difficult to explain to laypeople. In this paper, we adapt risk communication formats in conjunction with a model for the privacy risks of DP. The result are privacy notifications which explain the risk to an individual's privacy when using DP, rather than DP's functionality. We evaluate these novel privacy communication formats in a crowdsourced study. We find that they perform similarly to the best performing DP communications used currently in terms of objective understanding, but did not make our participants as confident in their understanding. We also discovered an influence, similar to the Dunning-Kruger effect, of the statistical numeracy on the effectiveness of some of our privacy communication formats and the DP communication format used currently. These results generate hypotheses in multiple directions, for example, toward the use of risk visualization to improve the understandability of our formats or toward adaptive user interfaces which tailor the risk communication to the characteristics of the reader.

Privacy Needs Reflection: Conceptional Design Rationales for Privacy-Preserving Explanation User Interfaces

Privacy-Preserving Explanation User Interface (PP-XUI)

Peter Sörries , Claudia Müller-Birn , Franziska Boenisch, Marian Margraf, Sabine Sayegh-Jodehl, Matthias Rose

Bonn: Gesellschaft für Informatik e.V. | 2021

Appeared in: Mensch und Computer 2021 - Workshopband

The application of machine learning (ML) in the medical domain has recently received a lot of attention. However, the constantly growing need for data in such ML-based approaches raises many privacy concerns, particularly when data originate from vulnerable groups, for example, people with a rare disease. In this context, a challenging but promising approach is the design of privacy-preserving computation technologies (e.g. differential privacy). However, design guidance on how to implement such approaches in practice has been lacking. In our research, we explore these challenges in the design process by involving stakeholders from medicine, security, ML, and human-computer interaction, as well as patients themselves. We emphasize the suitability of reflective design in this context by considering the concept of privacy by design. Based on a real-world use case situated in the healthcare domain, we explore the existing privacy needs of our main stakeholders, i.e. medical researchers or physicians and patients. Stakeholder needs are illustrated within two scenarios that help us to reflect on contradictory privacy needs. This reflection process informs conceptional design rationales and our proposal for privacy-preserving explanation user interfaces. We propose that the latter support both patients’ privacy preferences for a meaningful data donation and experts’ understanding of the privacy-preserving computation technology employed.

Keywords: WerteRadar

Situated Case Studies for a Human-Centered Design of Explanation User Interfaces

Situated Case Studies

Müller-Birn, Claudia; Glinka, Katrin; Sörries, Peter; Tebbe, Michael; Michl, Susanne

arXiv:2103.15462 | 2021

Appeared in: ACM CHI Workshop on Operationalizing Human-Centered Perspectives in Explainable AI

Researchers and practitioners increasingly consider a human-centered perspective in the design of machine learning-based applications, especially in the context of Explainable Artificial Intelligence (XAI). However, clear methodological guidance in this context is still missing because each new situation seems to require a new setup, which also creates different methodological challenges. Existing case study collections in XAI inspired us; therefore, we propose a similar collection of case studies for human-centered XAI that can provide methodological guidance or inspiration for others. We want to showcase our idea in this workshop by describing three case studies from our research. These case studies are selected to highlight how apparently small differences require a different set of methods and considerations. With this workshop contribution, we would like to engage in a discussion on how such a collection of case studies can provide a methodological guidance and critical reflection.