Rethinking Data Sharing at the Dawn of a Health Data Economy: A Viewpoint

摘要

A health data economy has begun to form, but its rise has been tempered by the profound lack of sharing of both data and data products such as models, intermediate results, and annotated training corpora, and this severely limits the potential for triggering economic cluster effects. Economic cluster effects represent a means to elicit benefit from economies of scale from internal data innovations and are beneficial because they may mitigate challenges from external sources. Within institutions, data product sharing is needed to spark data entrepreneurship and data innovation, and cross-institutional sharing is also critical, especially for rare conditions.Data innovation and data entrepreneurship have the potential to dramatically alter the current health care landscape as health data economy is beginning to revolutionize the field [1-3]. The European Commission estimated that the value of the European Union data economy would increase to US $860 (739) billion by 2020, up from US $331 (285) billion in 2015 [4,5]. Data economy, wherein health care will increasingly participate, has formed, and it is lucrative and quickly growing. Sharing data is necessary to enable thriving health data economy and produce clinical advances that are not possible in the current health care environment because of siloed data resources. These data resources span from the bench to the bedside and beyond, including genetic, genomic, proteomic, clinical, imaging, patient-centered, public health, and other relevant data. Electronic health record systems enable health care organizations to share clinical data across their organization, with patients themselves through patient portals, and to a limited extent owing to a lack of interoperability, with other organizations or systems. Rethinking how we share data and data products is essential for health data economy to thrive.