Data Protection in Personalized Health
(DPPH)
P4 (Predictive, Preventive, Personalized, and Participatory) medicine aims to revolutionise healthcare by providing better diagnoses and targeted preventive and therapeutic measures. To do this, it is critical to share clinical and research data on large numbers of individuals among all stakeholders. However, such medical data disclosure induces privacy risks, and consequently, privacy-preserving technologies need to be adopted to enable privacy-conscious medical data sharing.
This project seeks to address the primary scalability, privacy, security, and ethical challenges of data sharing for enabling effective P4 medicine. We aim to produce innovative technical solutions to many-privacy related issues in close collaboration with clinicians, medical researchers, and hospital IT specialists. Our goal is to develop a platform composed of software packages to enable ethical and responsible data sharing and health exchange in Switzerland.
Project Stages:
1. Analyze and compare health data protection laws in Switzerland & abroad
In 2015, the WHO published a survey of 120 countries which have implemented National Health Information Systems and their legislative contexts. Based on the results of this survey, our lab is investigating emergent norms in data protection legislation.
2. Identify success & failure factors for national health information systems
The scoping review highlights several compelling issues such as auditability and patient rights, including to what extent patients should have the right to access their own health records.
3. Stakeholder analysis
This involves a holistic requirements analysis of the medical data sharing ecosystem, from the standpoint of legal, ethical and medical stakeholders, including a roadmap for progressively addressing these requirements in the clinical and research practice. The stakeholder analysis proceeds from informal interviews with data protection officers at universities to a second round of interviews, to publications on privacy by design and health data infrastructure, and finally, a published scoping review.
Project Team
Marcello Ienca
James Schneiber
Effy Vayena
Project Link: external pagehttps://dpph.ch/
Project Partner: external pagePHRT
Scheibner, J., Ienca, M., & Vayena, E. (2021). Can Distributed Ledger Technology Support Auditability of Patient Data in Electronic Health Records? A Comparative Legal Study. JL Inf. & Sci., 26, 173.
Scheibner, J., Sleigh, J., Ienca, M., & Vayena, E. (2021). Benefits, challenges, and contributors to success for national eHealth systems implementation: a scoping review. Journal of the American Medical Informatics Association, 28(9), 2039-2049. external pagehttps://doi.org/10.1093/jamia/ocab096
Scheibner, J., Raisaro, J. L., Troncoso-Pastoriza, J. R., Ienca, M., Fellay, J., Vayena, E., & Hubaux, J. P. (2021). Revolutionizing medical data sharing using advanced privacy-enhancing technologies: technical, legal, and ethical synthesis. Journal of medical Internet research, 23(2), e25120. external page10.2196/25120
Scheibner, J., Ienca, M., & Vayena, E. (2021). Whose Health Record? A Comparison of Patient Rights under National Electronic Health Record (NEHR) Regulations in Europe and Asia-Pacific Jurisdictions. Sing. J. Legal Stud., 56.
Gasser, U., Ienca, M., Scheibner, J., Sleigh, J., & Vayena, E. (2020). Digital tools against COVID-19: taxonomy, ethical challenges, and navigation aid. The Lancet Digital Health, 2(8), e425-e434. external pagehttps://doi.org/10.1016/S2589-7500(20)30137-0
Scheibner, J., Ienca, M., Kechagia, S., Troncoso-Pastoriza, J. R., Raisaro, J. L., Hubaux, J. P., ... & Vayena, E. (2020). Data protection and ethics requirements for multisite research with health data: a comparative examination of legislative governance frameworks and the role of data protection technologies. Journal of Law and the Biosciences, 7(1), lsaa010. external pagehttps://doi.org/10.1093/jlb/lsaa010