Privacy Value Modeling: A Gateway To Ethical Big Data Handling

EU through General Data Protection Regulation, GDPR, stipulates to safeguard EU citizens fundamental rights by ensuring ethical, uninterrupted, big data sharing within and outside EU. Healthcare data is no exception to this. While dealing with big data, healthcare providers, Big Data Analysts(BDAs) and government bodies have collectively realized that patients values are to be prioritized for patients optimal value care and for an efficient healthcare system at large. To ensure patients value care, privacy, inter alia, is incorporated both by design within each domain’s data base and by policy via international, pan-European and national laws and regulations. This also became viable by standardizing the Information Security Management System (ISMS) indicators for healthcare providers and regulators alike. Lack of standard respective metrics for each privacy assuring parameter, constrains privacy from becoming an objective value object for each value actor. Still, privacy can be seen transforming from being a subjective value for each value actor to a (subjective) value object in healthcare setup. To confirm this concept, this paper is based on two value models. Both models are built using E3- value kit on the guidelines of Padlock Chain Model in a Dutch healthcare setting. First model is built to represent the current state of privacy protecting data/information sharing between patients and healthcare providers (from the patients perspective). Later, the focus is drawn upon the privacy assuring bilateral relationships between Lab (biobank and bio-depositary) and other key value actors. In future our endeavor will be to quantitatively measure privacy by design constituents i.e. Minimization, Enforcement and Transparency at the backdrop of privacy by policy (ISMS) indicators i.e. availability, integrity, confidentiality and accountability. Experts opinions are included to evaluate the viability of the model discussed for privacy-ensuring healthcare data sharing both on healthcare sector and on technical grounds.