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An instrument to identify computerised primary care research networks, genetic and disease registries prepared to conduct linked research: TRANSFoRm International Research Readiness (TIRRE) survey

Jennings, Emily, de Lusignan, Simon, Michalakidis, Georgios, Krause, Paul, Sullivan, Frank, Liyanage, Harshana and Delaney, Brendan C. (2018) An instrument to identify computerised primary care research networks, genetic and disease registries prepared to conduct linked research: TRANSFoRm International Research Readiness (TIRRE) survey Journal of Innovation in Health Informatics, 25.

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Abstract

Purpose The Translational Research and Patients safety in Europe (TRANSFoRm) project aims to integrate primary care with clinical research whilst improving patient safety. The TRANSFoRm International Research Readiness survey (TIRRE) aims to demonstrate data use through two linked data studies and by identifying clinical data repositories and genetic databases or disease registries prepared to participate in linked research. Method The TIRRE survey collects data at micro-, meso- and macro-levels of granularity; to fulfil data, study specific, business, geographical and readiness requirements of potential data providers for the TRANSFoRm demonstration studies. We used descriptive statistics to differentiate between demonstration-study compliant and non-compliant repositories. We only included surveys with >70% of questions answered in our final analysis, reporting the odds ratio (OR) of positive responses associated with a demonstration-study compliant data provider. Results We contacted 531 organisations within the Eurpean Union (EU). Two declined to supply information; 56 made a valid response and a further 26 made a partial response. Of the 56 valid responses, 29 were databases of primary care data, 12 were genetic databases and 15 were cancer registries. The demonstration compliant primary care sites made 2098 positive responses compared with 268 in non-use-case compliant data sources [OR: 4.59, 95% confidence interval (CI): 3.93–5.35, p < 0.008]; for genetic databases: 380:44 (OR: 6.13, 95% CI: 4.25–8.85, p < 0.008) and cancer registries: 553:44 (OR: 5.87, 95% CI: 4.13–8.34, p < 0.008).Conclusions TIRRE comprehensively assesses the preparedness of data repositories to participate in specific research projects. Multiple contacts about hypothetical participation in research identified few potential sites.

Item Type: Article
Divisions : Faculty of Engineering and Physical Sciences > Computer Science
Authors :
NameEmailORCID
Jennings, Emily
de Lusignan, SimonS.Lusignan@surrey.ac.uk
Michalakidis, Georgios
Krause, PaulP.Krause@surrey.ac.uk
Sullivan, Frank
Liyanage, Harshana
Delaney, Brendan C.
Date : 1 December 2018
DOI : doi.10.14236/jhi.v25i4.964
OA Location : https://informatics.bmj.com/content/25/4/207
Copyright Disclaimer : © 2018 The Author(s)
Uncontrolled Keywords : medical informatics, family practice, medical records systems, electronic health records, diabetes mellitus, Barrett’s disease
Depositing User : James Marshall
Date Deposited : 05 Feb 2020 15:58
Last Modified : 05 Feb 2020 15:58
URI: http://epubs.surrey.ac.uk/id/eprint/853667

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