Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Aug 11, 2021
Date Accepted: Feb 7, 2022
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Improving Research Patient Data Repositories from a Health Data Industry Viewpoint
ABSTRACT
Electronic patient data are critical to clinical and translational science, and research patient data repositories (RPDRs) are a central resource for any work in biomedical data science. However, the data science ecosystem, due to its inherently transdisciplinary nature, poses challenges to existing RPDRs and demands expansions and new developments, calling for a wide variety of new functions and capabilities in the administrative, educational, and organizational domains. The power of data science in the business realm is tremendous. In business, it is already viewed as a critical resource, and this will likely occur in healthcare as well. This perspective focuses on best practices in developing RPDRs, and identifies areas which we believe have not received enough attention. These include deployment, contribution calculation, internal talent marketplaces, data partnerships, data sovereigns’ new capital assets, and cross-border data sharing.
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Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.