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

TL;DR

This paper presents a participatory workshop method that explores patient values regarding medical data donation, aiming to inform the design of patient-centered data donation technologies.

Contribution

It introduces a novel workshop approach combining value-sensitive and reflective design to systematically uncover patient values and translate them into design requirements.

Findings

Workshop effectively identified patient values and needs.

Derived practical design requirements for data donation technologies.

Enhanced understanding of patient perspectives on data sharing.

Abstract

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 hypothetical, 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 workshop process and evaluate its application.