Digital healthcare information systems promise to improve care efficiency, to reduce complexity for patients, and to increase access to information and advance research efforts. A prominent example are multi-sided-platforms (MSP), which are essentially an information business, linking key healthcare stakeholders for individualized as well as aggregated information services. However, platform-based health innovation relies on the extensive collection, storage, and use of sensitive health information, raising issues of information privacy. This study uses the privacy calculus perspective to shed light on patients’ trade-off considerations. We use the case of a MSP, which connects patients, care providers and researchers, in order to model a multi-level calculus for health information of terminally ill patients. These insights inform stepwise consent options, which highlight the trade-offs between information value and patient privacy. By reflecting on the implications for patient empowerment this conceptual paper develops a research agenda on how to study and design responsible health information systems.
Dassel, Katharina and Klein, Stefan, "(My) Data for (my) Health – Privacy Calculi of Terminally-ill Patients with Rare Diseases" (2020). BLED 2020 Proceedings. 41.