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

A Blockchain-based Approach for Data Accountability and Provenance Tracking

The recent approval of the General Data Protection Regulation (GDPR) imposes new data protection requirements on data controllers and processors with respect to the processing of European Union (EU) residents' data. These requirements consist of a single set of rules that have binding legal status and should be enforced in all EU member states. In light of these requirements, we propose in this paper the use of a blockchain-based approach to support data accountability and provenance tracking. Our approach relies on the use of publicly auditable contracts deployed in a blockchain that increase the transparency with respect to the access and usage of data. We identify and discuss three different models for our approach with different granularity and scalability requirements where contracts can be used to encode data usage policies and provenance tracking information in a privacy-friendly way. From these three models we designed, implemented, and evaluated a model where contracts are deployed by data subjects for each data controller, and a model where subjects join contracts deployed by data controllers in case they accept the data handling conditions. Our implementations show in practice the feasibility and limitations of contracts for the purposes identified in this paper

The Data Breach Dilemma: Proactive Solutions for Protecting Consumers’ Personal Information

Data breaches are an increasingly common part of consumers’ lives. No institution is immune to the possibility of an attack. Each breach inevitably risks the release of consumers’ personally identifiable information and the strong possibility of identity theft. Unfortunately, current solutions for handling these incidents are woefully inadequate. Private litigation like consumer class actions and shareholder lawsuits each face substantive legal and procedural barriers. States have their own data security and breach notification laws, but there is currently no unifying piece of legislation or strong enforcement mechanism. This Note argues that proactive solutions are required. First, a national data security law—setting minimum data security standards, regulating the use and storage of personal information, and expanding the enforcement role of the Federal Trade Commission—is imperative to protect consumers’ data. Second, a proactive solution requires reconsidering how to minimize the problem by going to its source: the collection of personally identifiable information in the first place. This Note suggests regulating companies’ collection of Social Security numbers, and, eventually, using a system based on distributed ledger technology to replace the ubiquity of Social Security numbers

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