The Impact of Law on Syndromic Disease Surveillance Implementation

Purtle, Jonathan; Field, Robert I.; Hipper, Thomas J.; Nash-Arott, Jillian; Chernak, Esther; Buehler, James W.

doi:10.1097/phh.0000000000000508

Cited by 5 publications

(3 citation statements)

References 18 publications

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“…The consultancy was held on January 19th & 20th 2017 at the University of Utah’s Department of Biomedical Informatics, and consisted of 25 participants. Participants were drawn from various different sectors, with representation from ISDS [ 2 ], the Defense Threat Reduction Agency [ 1 ], universities and research institutes [ 5 ], public health departments [ 6 ], the Department of Veterans Affairs [ 4 ], non-profit organisations [ 2 ], and technology firms [ 1 ]. Participants were drawn from a variety of different professional backgrounds, including research scientists, software developers, public health officials, epidemiologists, and analysts.…”

Section: Results: Consultancymentioning

confidence: 99%

“…Free-text chief complaints remain a vital resource for syndromic surveillance. However, the widespread adoption of Electronic Health Records (and federal Meaningful Use requirements [ 5 ]) has brought changes to the syndromic surveillance practice ecosystem. These changes have included the widespread use of EHR-generated chief complaint “pick lists” (i.e.…”

Section: Materials and Methods: Use Casementioning

confidence: 99%

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Cross Disciplinary Consultancy to Bridge Public Health Technical Needs and Analytic Developers: Negation Detection Use Case

Conway

Mowery

Ising

et al. 2018

OJPHI

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This paper describes a continuing initiative of the International Society for Disease Surveillance designed to bring together public health practitioners and analytics solution developers from both academia and industry. Funded by the Defense Threat Reduction Agency, a series of consultancies have been conducted on a range of topics of pressing concern to public health (e.g. developing methods to enhance prediction of asthma exacerbation, developing tools for asyndromic surveillance from chief complaints). The topic of this final consultancy, conducted at the University of Utah in January 2017, is focused on defining a roadmap for the development of algorithms, tools, and datasets for improving the capabilities of text processing algorithms to identify negated terms (i.e. negation detection) in free-text chief complaints and triage reports.

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Section: Results: Consultancymentioning

confidence: 99%

Section: Materials and Methods: Use Casementioning

confidence: 99%

Cross Disciplinary Consultancy to Bridge Public Health Technical Needs and Analytic Developers: Negation Detection Use Case

Conway

Mowery

Ising

et al. 2018

OJPHI

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“…However, there are also ethical and medico-legal risks in not using available information that could protect local and, potentially, international communities from serious disease outbreaks [21, 22]. Health authorities and researchers in Australia, and elsewhere, are beginning to explore the use of pathogen WGS and event-based social media monitoring, but many jurisdictions still lack policies and structures to support these technologies [5, 23, 24].…”

Section: Introductionmentioning

confidence: 99%

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

Degeling

Johnson

Gilbert

2019

Health Res Policy Sys

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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.

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Dissemination and Implementation: The Final Frontier

Maddock

Moore

2019

Journal of Public Health Management and Practice

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The Impact of Law on Syndromic Disease Surveillance Implementation

Cited by 5 publications

References 18 publications

Cross Disciplinary Consultancy to Bridge Public Health Technical Needs and Analytic Developers: Negation Detection Use Case

Cross Disciplinary Consultancy to Bridge Public Health Technical Needs and Analytic Developers: Negation Detection Use Case

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

Dissemination and Implementation: The Final Frontier

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