Logo des Repositoriums

Auflistung nach Schlagwort "Data Donation"

1 - 2 von 2
  • Konferenzbeitrag
    Unfolding Values through Systematic Guidance: Conducting a Value-Centered Participatory Workshop for a Patient-Oriented Data Donation
    (Mensch und Computer 2022 - Tagungsband, 2022) Leimstädtner, David; Sörries, Peter; Müller-Birn, Claudia
    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.
  • Zeitschriftenartikel
    Your data is gold – Data donation for better healthcare?
    (it - Information Technology: Vol. 61, No. 5-6, 2019) Strotbaum, Veronika; Pobiruchin, Monika; Schreiweis, Björn; Wiesner, Martin; Strahwald, Brigitte
    Today, medical data such as diagnoses, procedures, imaging reports and laboratory tests, are not only collected in context of primary research and clinical studies. In addition, citizens are tracking their daily steps, food intake, sport exercises, and disease symptoms via mobile phones and wearable devices. In this context, the topic of “data donation” is drawing increased attention in science, politics, ethics and practice. This paper provides insights into the status quo of personal data donation in Germany and from a global perspective. As this topic requires a consideration of several perspectives, potential benefits and related, multifaceted challenges for citizens, patients and researchers are discussed. This includes aspects such as data quality & accessibility, privacy and ethical considerations.