Challenges and Opportunities for Exploring Patient-Level Data

Abstract

The proper exploration of patient-level data will pave the way towards personalised medicine. To better assess the state of the art in this field we identify the challenges and uncover the opportunities for the exploration of patient-level data through the review of well-known initiatives and projects focusing on the exploration of patient-level data. These cover a broad array of topics, from genomics to patient registries up to rare diseases research, among others. For each, we identified basic goals, involved partners, defined strategies and key technological and scientific outcomes, establishing the foundation for our analysis framework with four pillars: control, sustainability, technology, and science. Substantial research outcomes have been produced towards the exploration of patient-level data. The potential behind these data will be essential to realise the personalised medicine premise in upcoming years. Hence, relevant stakeholders continually push forward new developments in this domain, bringing novel opportunities that are ripe for exploration. Despite last decade’s translational research advances, personalised medicine is still far from being a reality. Patients’ data underlying potential goes beyond daily clinical practice. There are miscellaneous challenges and opportunities open for the exploration of these data by academia and business stakeholders.