Communicable Disease Surveillance Ethics in the Age of Big Data and New Technology

Surveillance is essential for communicable disease prevention and control. Traditional notification of demographic and clinical information, about individuals with selected (notifiable) infectious diseases, allows appropriate public health action and is protected by public health and privacy legislation, but is slow and insensitive. Big data–based electronic surveillance, by commercial bodies and government agencies (for profit or population control), which draws on a plethora of internet- and mobile device–based sources, has been widely accepted, if not universally welcomed. Similar anonymous digital sources also contain syndromic information, which can be analysed, using customised algorithms, to rapidly predict infectious disease outbreaks, but the data are nonspecific and predictions sometimes misleading. However, public health authorities could use these online sources, in combination with de-identified personal health data, to provide more accurate and earlier warning of infectious disease events—including exotic or emerging infections—even before the cause is confirmed, and allow more timely public health intervention. Achieving optimal benefits would require access to selected data from personal electronic health and laboratory (including pathogen genomic) records and the potential to (confidentially) re-identify individuals found to be involved in outbreaks, to ensure appropriate care and infection control.

Learn more about the MBI authors and their research:  Prof Lyn Gilbert, Dr Chris Degeling and Dr Jane Johnson

Outline

• Surveillance and Big Data are everywhere
• Electronic Health Records—Benefits and Risks
• Communicable Disease Surveillance and Outbreak Investigations
• Notification of Communicable Diseases of Public Health Importance
• Outbreak Management Using Pathogen Whole-Genome Sequencing
• Syndromic Surveillance, Digital Epidemiology and Big Data
• Footnotes
• References