Practices and challenges in clinical data sharing

The debate on data access and privacy is an ongoing one. It is kept alive by the never-ending changes/upgrades in (i) the shape of the data collected (in terms of size, diversity, sensitivity and quality), (ii) the laws governing data sharing, (iii) the amount of free public data available on individuals (social media, blogs, population-based databases, etc.), as well as (iv) the available privacy enhancing technologies. This paper identifies current directions, challenges and best practices in constructing a clinical data-sharing framework for research purposes. Specifically, we create a taxonomy for the framework, identify the design choices available within each taxon, and demonstrate thew choices using current legal frameworks. The purpose is to devise best practices for the implementation of an effective, safe and transparent research access framework

A Survey of Multimodal Information Fusion for Smart Healthcare: Mapping the Journey from Data to Wisdom

Multimodal medical data fusion has emerged as a transformative approach in smart healthcare, enabling a comprehensive understanding of patient health and personalized treatment plans. In this paper, a journey from data to information to knowledge to wisdom (DIKW) is explored through multimodal fusion for smart healthcare. We present a comprehensive review of multimodal medical data fusion focused on the integration of various data modalities. The review explores different approaches such as feature selection, rule-based systems, machine learning, deep learning, and natural language processing, for fusing and analyzing multimodal data. This paper also highlights the challenges associated with multimodal fusion in healthcare. By synthesizing the reviewed frameworks and theories, it proposes a generic framework for multimodal medical data fusion that aligns with the DIKW model. Moreover, it discusses future directions related to the four pillars of healthcare: Predictive, Preventive, Personalized, and Participatory approaches. The components of the comprehensive survey presented in this paper form the foundation for more successful implementation of multimodal fusion in smart healthcare. Our findings can guide researchers and practitioners in leveraging the power of multimodal fusion with the state-of-the-art approaches to revolutionize healthcare and improve patient outcomes.Comment: This work has been submitted to the ELSEVIER for possible publication. Copyright may be transferred without notice, after which this version may no longer be accessibl

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