Visions and Challenges in Managing and Preserving Data to Measure Quality of Life

Health-related data analysis plays an important role in self-knowledge, disease prevention, diagnosis, and quality of life assessment. With the advent of data-driven solutions, a myriad of apps and Internet of Things (IoT) devices (wearables, home-medical sensors, etc) facilitates data collection and provide cloud storage with a central administration. More recently, blockchain and other distributed ledgers became available as alternative storage options based on decentralised organisation systems. We bring attention to the human data bleeding problem and argue that neither centralised nor decentralised system organisations are a magic bullet for data-driven innovation if individual, community and societal values are ignored. The motivation for this position paper is to elaborate on strategies to protect privacy as well as to encourage data sharing and support open data without requiring a complex access protocol for researchers. Our main contribution is to outline the design of a self-regulated Open Health Archive (OHA) system with focus on quality of life (QoL) data.Comment: DSS 2018: Data-Driven Self-Regulating System

Dwarna : a blockchain solution for dynamic consent in biobanking

Dynamic consent aims to empower research partners and facilitate active participation in the research process. Used within the context of biobanking, it gives individuals access to information and control to determine how and where their biospecimens and data should be used. We present Dwarna—a web portal for ‘dynamic consent’ that acts as a hub connecting the different stakeholders of the Malta Biobank: biobank managers, researchers, research partners, and the general public. The portal stores research partners’ consent in a blockchain to create an immutable audit trail of research partners’ consent changes. Dwarna’s structure also presents a solution to the European Union’s General Data Protection Regulation’s right to erasure—a right that is seemingly incompatible with the blockchain model. Dwarna’s transparent structure increases trustworthiness in the biobanking process by giving research partners more control over which research studies they participate in, by facilitating the withdrawal of consent and by making it possible to request that the biospecimen and associated data are destroyed.peer-reviewe

Secure and Trustable Electronic Medical Records Sharing using Blockchain

Electronic medical records (EMRs) are critical, highly sensitive private information in healthcare, and need to be frequently shared among peers. Blockchain provides a shared, immutable and transparent history of all the transactions to build applications with trust, accountability and transparency. This provides a unique opportunity to develop a secure and trustable EMR data management and sharing system using blockchain. In this paper, we present our perspectives on blockchain based healthcare data management, in particular, for EMR data sharing between healthcare providers and for research studies. We propose a framework on managing and sharing EMR data for cancer patient care. In collaboration with Stony Brook University Hospital, we implemented our framework in a prototype that ensures privacy, security, availability, and fine-grained access control over EMR data. The proposed work can significantly reduce the turnaround time for EMR sharing, improve decision making for medical care, and reduce the overall costComment: AMIA 2017 Annual Symposium Proceeding

Internet of robotic things : converging sensing/actuating, hypoconnectivity, artificial intelligence and IoT Platforms

The Internet of Things (IoT) concept is evolving rapidly and influencing newdevelopments in various application domains, such as the Internet of MobileThings (IoMT), Autonomous Internet of Things (A-IoT), Autonomous Systemof Things (ASoT), Internet of Autonomous Things (IoAT), Internetof Things Clouds (IoT-C) and the Internet of Robotic Things (IoRT) etc.that are progressing/advancing by using IoT technology. The IoT influencerepresents new development and deployment challenges in different areassuch as seamless platform integration, context based cognitive network integration,new mobile sensor/actuator network paradigms, things identification(addressing, naming in IoT) and dynamic things discoverability and manyothers. The IoRT represents new convergence challenges and their need to be addressed, in one side the programmability and the communication ofmultiple heterogeneous mobile/autonomous/robotic things for cooperating,their coordination, configuration, exchange of information, security, safetyand protection. Developments in IoT heterogeneous parallel processing/communication and dynamic systems based on parallelism and concurrencyrequire new ideas for integrating the intelligent “devices”, collaborativerobots (COBOTS), into IoT applications. Dynamic maintainability, selfhealing,self-repair of resources, changing resource state, (re-) configurationand context based IoT systems for service implementation and integrationwith IoT network service composition are of paramount importance whennew “cognitive devices” are becoming active participants in IoT applications.This chapter aims to be an overview of the IoRT concept, technologies,architectures and applications and to provide a comprehensive coverage offuture challenges, developments and applications