Perspectives of Australian policy-makers on the potential benefits and risks of technologically enhanced communicable disease surveillance – a modified Delphi survey

Abstract

Background Event-based social media monitoring and pathogen whole genome sequencing (WGS) will enhance communicable disease surveillance research and systems. If linked electronically and scanned systematically, the information provided by these technologies could be mined to uncover new epidemiological patterns and associations much faster than traditional public health approaches. The benefits of earlier outbreak detection are significant, but implementation could be opposed in the absence of a social licence or if ethical and legal concerns are not addressed. Methods A three-phase mixed-method Delphi survey with Australian policy-makers, health practitioners and lawyers ( n = 44) was conducted to explore areas of consensus and disagreement over (1) key policy and practical issues raised by the introduction of novel communicable disease surveillance programmes; and (2) the most significant and likely risks from using social media content and WGS technologies in epidemiological research and outbreak investigations. Results Panellists agreed that the integration of social media monitoring and WGS technologies into communicable disease surveillance systems raised significant issues, including impacts on personal privacy, medicolegal risks and the potential for unintended consequences. Notably, their concerns focused on how these technologies should be used, rather than how the data was collected. Panellists held that social media users should expect their posts to be monitored in the interests of public health, but using those platforms to contact identified individuals was controversial. The conditions of appropriate use of pathogen WGS in epidemiological research and investigations was also contentious. Key differences amongst participants included the necessity for consent before testing and data-linkage, thresholds for action, and the legal and ethical importance of harms to individuals and commercial entities. The erosion of public trust was seen as the most significant risk from the systematic use of these technologies. Conclusions Enhancing communicable disease surveillance with social-media monitoring and pathogen WGS may cause controversy. The challenge is to determine and then codify how these technologies should be used such that the balance between individual risk and community benefit is widely accepted. Participants agreed that clear guidelines for appropriate use that address legal and ethical concerns need to be developed in consultation with relevant experts and the broader Australian public. Electronic supplementary material The online version of this article (10.1186/s12961-019-0440-3) contains supplementary material, which is available to authorized users.

Changes in public preferences for technologically enhanced surveillance following the COVID-19 pandemic: a discrete choice experiment

“…The same requirement could have been expected for data quality of any surveillance system, considering the importance placed on it by Australian practitioners and policymakers, in expert and public discourses. 23 28 The decline in importance given to data certainty/confidence by respondents after COVID-19 outbreak onset suggests that its operational value might not have been widely appreciated at the time of data collection. In real-world systems, data accuracy, utility and privacy are competing attributes—such that a lack of data accuracy can either wrongly identify an individual as being affected, if data specificity is poor, or fail to detect another if sensitivity is lacking.…”

“…Previous research has identified that public acceptability was a key consideration for Australian practitioners and policymakers, in deciding how and when to use technologies to enhance communicable disease surveillance systems. 23 Unless the threat to public health was imminent, the potential for such systems to erode public trust was seen as a crucial barrier to implementation, whereby the development of publicly supported guidelines and systems of oversight was identified as a necessary condition for their operation. Therefore, the extent to which preferred surveillance system attributes remained stable between the two data collection periods is notable.…”

“…DCE attributes and levels were determined based on consultations within the research team, discussions across our extended expert networks (including through presentations at Centre of Research Excellence in Emerging Infectious Diseases Colloquia in 2018 and 2019) and our team’s Delphi study of Australian policymakers, health practitioners and lawyers. 23 The final attributes and levels are presented in table 1 .…”

Community perspectives on the benefits and risks of technologically enhanced communicable disease surveillance systems: a report on four community juries

“…Drawing on the outcomes of a preparatory Delphi process [49], we consulted a dozen relevant Australian policymakers and public health practitioners (including several State/Territory Chief Health Officers, directors of communicable disease branches and public health laboratories which employ WGS based surveillance of communicable diseases) to design the questions for the juries' consideration ( Fig. 1).…”

“…Decisions, about what data should be collected and what action thresholds are used, are not just matters for experts [37]. To secure social licence, these systems must align with community values; this can be facilitated by structured public dialogue to develop ethically and legally defensible justification for their design and operation [6,49]. In this paper, we report on four community juries convened to consider the acceptability and legitimacy of using new technologies to enhance public health research and communicable disease surveillance.…”