Clinical Informatics Foundations of 57 Years Sentinel and Genomic Surveillance: Data Quality, Linkage and Access

Sentinel surveillance networks are sophisticated health information systems that warn about outbreaks and spread of infectious diseases with epidemic or pandemic potential, the effectiveness of countermeasures and pressures on health systems. They are underpinned by their ability to turn data into information and knowledge in a timely way. The Royal College of General Practitioners (RCGP) Research and Surveillance Centre (RSC) is one of Europe's oldest. We report its progressive use of technology to improve the scope of sentinel surveillance, with a focus on genomic surveillance. The technologies include terminologies, phenotypes, compute capability, virology including virial genome sequencing, and serology. The RSC's data collection developed from partial, then full extraction of computerised medical record (CMR) data. with increasing sophistication in its creation of phenotypes. The scope of surveillance in 1967 was clinical diagnosis, influenza-like-illness (ILI) was its focus. In the 1992-1993 winter virology sampling started, with progressively more sophisticated sequencing of the viral genome. From 2008 viral sequencing was comprehensive with the Global Initiative on Sharing All Influenza Data (GISAID) the primary repository, supplemented by the COVID-19 Genomics UK (COG-UK) consortium in-pandemic. High quality primary care data captures sociodemographic features, risk group status, and vaccine exposure; linked hospital and death data informs about severe outcomes; virology identified the causative organism and genomic surveillance the variant. Timely data access and analysis will enable identification of new variants resistant to vaccination or other countermeasures and enable new interventions to be developed.

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Journal
Studies in health technology and informatics
Published
2024-11-22
DOI
https://doi.org/10.3233/shti241077
Primary Topic
Ethics in Clinical Research
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article
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article

Clinical Informatics Foundations of 57 Years Sentinel and Genomic Surveillance: Data Quality, Linkage and Access

Simon de Lusignan, Mark Joy, Maria Zambon
Studies in health technology and informatics
Ethics in Clinical Research
article

Clinical Informatics Foundations of 57 Years Sentinel and Genomic Surveillance: Data Quality, Linkage and Access

Simon de Lusignan, Mark Joy, Maria Zambon
article en

Abstract

Sentinel surveillance networks are sophisticated health information systems that warn about outbreaks and spread of infectious diseases with epidemic or pandemic potential, the effectiveness of countermeasures and pressures on health systems. They are underpinned by their ability to turn data into information and knowledge in a timely way. The Royal College of General Practitioners (RCGP) Research and Surveillance Centre (RSC) is one of Europe's oldest. We report its progressive use of technology to improve the scope of sentinel surveillance, with a focus on genomic surveillance. The technologies include terminologies, phenotypes, compute capability, virology including virial genome sequencing, and serology. The RSC's data collection developed from partial, then full extraction of computerised medical record (CMR) data. with increasing sophistication in its creation of phenotypes. The scope of surveillance in 1967 was clinical diagnosis, influenza-like-illness (ILI) was its focus. In the 1992-1993 winter virology sampling started, with progressively more sophisticated sequencing of the viral genome. From 2008 viral sequencing was comprehensive with the Global Initiative on Sharing All Influenza Data (GISAID) the primary repository, supplemented by the COVID-19 Genomics UK (COG-UK) consortium in-pandemic. High quality primary care data captures sociodemographic features, risk group status, and vaccine exposure; linked hospital and death data informs about severe outcomes; virology identified the causative organism and genomic surveillance the variant. Timely data access and analysis will enable identification of new variants resistant to vaccination or other countermeasures and enable new interventions to be developed.

Studies in health technology and informaticsVol. 321
University of Oxford (GB), UK Health Security Agency (GB)
Good health and well-being
Openalex Percentile: Top 33%
Ethics in Clinical Research
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Clinical Informatics Foundations of 57 Years Sentinel and Genomic Surveillance: Data Quality, Linkage and Access — Simon de Lusignan, Mark Joy, et al. · Studies in health technology and informatics (2024) | TGRS Research Map | TGRS