Increasing the Value of Real-World Crowdsourcing Health Data with e-MetaBio, a Novel Patient-Centric IT Infrastructure

Introduction Digital health and evolutionary medicine create new insights of mediation and health treatment plan support, introducing crowdsourcing and patients’ real-world data records, so as to promote the development of high-quality healthcare accessible to everyone. Within the scope of its activities Metabio’s team has developed an interoperable unified method and technology for crowd-generated databases, creating a user-friendly platform for data collection, processing, and distribution among stakeholders within the global healthcare system in real time. Methods In this paper we describe standard methodologies, requirements, issues, and challenges for the design and deployment of an advanced IT infrastructure for longitudinal structured patient-related data records, based on a patient-centric model of operation, as well as the difficulties for the development of disease-specific user-prefixed interface for real-world data collection. Results Through a dynamic real-time (DRT) e-consent module and digital rights management protocols, the overall platform enables patients to monitor and manage their disease-related conditions, as well as for healthcare providers and/or research entities to have access to valuable biomedical patient data, not recorded so far. Conclusion The project introduces novel perspectives for future evidence-based practices, promoting research and development and improving current healthcare systems, by using crowd-generated data sources that bring a much higher degree of accuracy and value for the entire healthcare system.