  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 clinical data for
secondary research use, presents a promising resource for such datasets. Yet,
current consent interfaces mediating data-sharing decisions are found to favor
data-collectors' values by leveraging cognitive biases in data-subjects towards
higher data-sharing rates. This raises ethical concerns about the use of data
collected, as well as concerning the quality of the resulting datasets. 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:
Participatory workshops explore patient values, informing the design of a
proposed Value-Centered Consent Interface. An online experiment demonstrates
our interface element's effect, increasing value-congruence in data-sharing
decisions. Our proposed consent interface design is then adapted to the
research context through a co-creation workshop with subject experts and 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 to support value-congruent
decision-making, and providing a situated evaluation of the proposed interface
with patients.
