Sharing Is Caring—Data Sharing Initiatives in Healthcare

Tim Hulsen
Additional contact information
Tim Hulsen: Department of Professional Health Solutions & Services, Philips Research, 5656AE Eindhoven, The Netherlands

IJERPH, 2020, vol. 17, issue 9, 1-12

Abstract: In recent years, more and more health data are being generated. These data come not only from professional health systems, but also from wearable devices. All these ‘big data’ put together can be utilized to optimize treatments for each unique patient (‘precision medicine’). For this to be possible, it is necessary that hospitals, academia and industry work together to bridge the ‘valley of death’ of translational medicine. However, hospitals and academia often are reluctant to share their data with other parties, even though the patient is actually the owner of his/her own health data. Academic hospitals usually invest a lot of time in setting up clinical trials and collecting data, and want to be the first ones to publish papers on this data. There are some publicly available datasets, but these are usually only shared after study (and publication) completion, which means a severe delay of months or even years before others can analyse the data. One solution is to incentivize the hospitals to share their data with (other) academic institutes and the industry. Here, we show an analysis of the current literature around data sharing, and we discuss five aspects of data sharing in the medical domain: publisher requirements, data ownership, growing support for data sharing, data sharing initiatives and how the use of federated data might be a solution. We also discuss some potential future developments around data sharing, such as medical crowdsourcing and data generalists.

Keywords: data sharing; data management; data science; big data; healthcare (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2020
References: View references in EconPapers View complete reference list from CitEc
Citations: View citations in EconPapers (3)

Downloads: (external link)
https://www.mdpi.com/1660-4601/17/9/3046/pdf (application/pdf)
https://www.mdpi.com/1660-4601/17/9/3046/ (text/html)

Related works:
This item may be available elsewhere in EconPapers: Search for items with the same title.

Export reference: BibTeX RIS (EndNote, ProCite, RefMan) HTML/Text

Persistent link: https://EconPapers.repec.org/RePEc:gam:jijerp:v:17:y:2020:i:9:p:3046-:d:351133

Access Statistics for this article

IJERPH is currently edited by Ms. Jenna Liu

More articles in IJERPH from MDPI
Bibliographic data for series maintained by MDPI Indexing Manager ().