This is a consortium set up to support international collaboration on COVID-19 research while respecting patient privacy.
In the case of a pandemic due to a new pathogen, it is crucial for healthcare facilities to be able to share information about the efficacy of various treatments and relate them to the clinical and genetic profile of the patients. Isolated and small-scale datasets in different silos limit the ability to do in-depth meaningful analysis. There is a need to find similar patients and build better and more accurate personalized or subpopulation models that can help better understand risk factors and more effectively predict the response and progression of the disease.
The conventional solution is to either share aggregated data or to share “de-identified” data. However, these techniques have well-known limitations and can severely restrict the accuracy, and therefore the utility, of the obtained insights. The heterogeneity of national data protection regulations is an additional obstacle.
The SCOR consortium response to this concern consists in making use of well-known, mathematically proven cryptographic techniques that are embodied in an open-source software package called MedCo, made available to all consortium partners. MedCo will be used to address specific medical questions, defined within the consortium.
SCOR will prove that it is possible and faster to advance in COVID-19 research (and similar epidemics and pandemics) by obtaining world-scale meaningful insights without compromising the patients’ privacy.
SCOR white paper
J L Raisaro, Francesco Marino, Juan Troncoso-Pastoriza, Raphaelle Beau-Lejdstrom, Riccardo Bellazzi, Robert Murphy, Elmer V Bernstam, Henry Wang, Mauro Bucalo, Yong Chen, Assaf Gottlieb, Arif Harmanci, Miran Kim, Yejin Kim, Jeffrey Klann, Catherine Klersy, Bradley A Malin, Marie Méan, Fabian Prasser, Luigia Scudeller, Ali Torkamani, Julien Vaucher, Mamta Puppala, Stephen T C Wong, Milana Frenkel-Morgenstern, Hua Xu, Baba Maiyaki Musa, Abdulrazaq G Habib, Trevor Cohen, Adam Wilcox, Hamisu M Salihu, Heidi Sofia, Xiaoqian Jiang, J P Hubaux, SCOR: A secure international informatics infrastructure to investigate COVID-19, Journal of the American Medical Informatics Association, https://doi.org/10.1093/jamia/ocaa172
This is what makes SCOR stand out among other approaches to COVID-19 research:
DISTRIBUTED DATA EXPLORATION AND ANALYSIS
Access-controlled exploration and analysis across internationally-distributed clinical sites: enable accurate complex analyses as if all the data were centralized, without the need of moving the data or relying on meta-analyses.
Local data control AND STREAMLINED IRB APPROVAl
Each clinical site has full control over its data, which can be stored locally or at an external storage provider. No local clear-text data (not even local aggregates) ever leaves the chosen storage. The achieved protection guarantees facilitate ethics approval.
There is no need of any central authority as, thanks to multiparty homomorphic encryption, trust is distributed across all clinical sites and data is encrypted end-to-end. No clear-text data is leaked even if a subset of sites gets compromised.
The consortium is structured in the following task forces:
Infrastructure and Deployment
This task force is in charge of provisioning the machines and the network resources needed at each site to interconnect all the nodes and enable the execution of the encrypted computations across the consortium network world-wide.
Security and Privacy
This task force adapts and customizes the privacy-conscious mechanisms (based on multi party homomorphic encryption and additional privacy enhancing technologies) that enable the execution of the research protocols on end-to-end protected data, in such a way that individual data never leaves the premises or the control of the data owner.
This task force defines the research protocols on COVID-19 data, to identify useful patterns and interdependencies, and to model the virus progression, the development of immune responses, and the effectiveness of several treatments depending on the patient features.
Governance and Ethics
This task force deals with the governance of the consortium, addresses the data ownership and management policies, and defines the ethics framework for the international sharing and collaboration on COVID-19 patient data.
Interoperability & Data Formats
This task force is in charge of defining the common data formats for coding the information from COVID-19 patients, so that they can be interoperable across the whole network. For this purpose, it relies in global standards such as OMOP and the minimum datasets defined by the World Health Organization (WHO).
Swiss Federal Institute of Technology Lausanne
The University of Texas
Health Science Center Houston
Houston, TX, USA
Elmer V. Bernstam
Lausanne University Hospital (CHUV)
Jean Louis Raisaro
Infectious & Tropical Diseases Unit of ACE-PHAP
Bayero University Kano (BUK), Kano, Nigeria
Abdulrazaq Garba Habib
Baba Maiyaki Musa