PERSIST Big Data Platform: Privacy, Security, and Ethics

The sustainability of a healthcare system does not depend solely on its systemic efficiency and valid cost/benefit calculations. The system’s sustainability is also based on the ability to train patients’ and practitioners’ mentality to create a public and widespread culture of health understood as good medical treatment, but also as a quality of life, and a return of people to their individual and personal agency. Big Data in the medical-scientific field can help to create a “precision medicine” capable of integrating huge amounts of data from different settings. This integration should enable care of the patient at all stages of his/her treatment process and favour considerations of each patient’s specificity and uniqueness, through intervention methods designed only for her/his situation. Overall, therefore, healthcare systems could be posed to becoming more effective, and – as defined previously – sustainable. This paper highlights the technological and ethical strengths that underlie the architecture of the PERSIST Big Data Platform. The project’s prerogative was that processing of personal data, even when needed for post-intervention care or biomedical research, should occur with the utmost respect of national and EU data protection regulations and upon providing to clinical research participants adequate protocols for informed consent with the most advanced accounts in techno-ethics and biocitizenship fields.