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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

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Jennings_2018_An_instrument_to_JIHI_207_CC.pdf (784.1Kb)
Date
10/2018
Author
Jennings, Emily
de Lusignan, Simon
Michalakidis, Georgios
Krause, Paul
Sullivan, Frank
Liyanage, Harshana
Delaney, Brendan C.
Keywords
Barrett’s disease
Diabetes mellitus
Electronic health records
Family practice
Medical informatics
Medical records systems
QA75 Electronic computers. Computer science
R Medicine
ZA4050 Electronic information resources
Computer Science Applications
Health Information Management
Health Informatics
NDAS
Metadata
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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.
Citation
Jennings , E , de Lusignan , S , Michalakidis , G , Krause , P , Sullivan , F , Liyanage , H & Delaney , B 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 , vol. 25 , no. 4 , pp. 207-220 . https://doi.org/10.14236/jhi.v25i4.964
Publication
Journal of Innovation in Health Informatics
Status
Peer reviewed
DOI
https://doi.org/10.14236/jhi.v25i4.964
ISSN
2058-4555
Type
Journal article
Rights
Copyright © 2018 The Author(s). Published by BCS, The Chartered Institute for IT under Creative Commons license http://creativecommons.org/licenses/by/4.0/
Description
Funding: TRANSFoRm is supported by the European Commission – DG INFSO (FP7 2477).
Collections
  • University of St Andrews Research
URI
http://hdl.handle.net/10023/18881

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