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Sharing of Big Data in Healthcare: Public Opinion, Trust, and Privacy Considerations for Health Informatics Researchers

Advances in technology has transformed clinical medicine; electronic patient records routinely store clinical 
notes, internet-enabled mobile apps support self-management of chronic diseases, point-of-care testing enables 
laboratory tests to be performed outside of hospital environments, patient treatment can be delivered over wide 
geographic areas and wireless sensor networks are able to collect and send physiological data. Increasingly, 
this technology leads to the development of large databases of sensitive electronic patient information. There 
is public interest into the secondary use of this data; many concerns are voiced about the involvement of private 
companies and the security and privacy of this data, but at the same time, these databases present a valuable 
source of clinical information which can drive health informatics and clinical research, leading to improved 
patient treatment. In this position paper, we argue that for health informatics projects to be successful, public 
concerns over the secondary use of patient data need to be addressed in the design and implementation of the 
technology and conduct of the research project.