Clinical Ontologies Improve Case Finding of Primary Biliary Cholangitis in UK Primary and Secondary Care
- PDF / 762,617 Bytes
- 16 Pages / 595.276 x 790.866 pts Page_size
- 40 Downloads / 253 Views
ORIGINAL ARTICLE
Clinical Ontologies Improve Case Finding of Primary Biliary Cholangitis in UK Primary and Secondary Care Marinos Pericleous1,2 · Claire Kelly1,2 · Joseph A. Odin3 · Yiannis Kallis4 · Chris McGee2,5 · Julian Sherlock2,6 · Ivelina Yonova2,5,6 · Simon de Lusignan2,5,6 · Aftab Ala1,2,7 Received: 10 October 2019 / Accepted: 30 December 2019 © Springer Science+Business Media, LLC, part of Springer Nature 2020
Abstract Introduction PBC registries in the UK focus on data from secondary care without clear coordinated contribution from primary care. The Royal College of General Practitioners (RCGP) Research and Surveillance Centre (RSC) receives data from > 500 primary care practices (PCPs). Notably, the Lancet commissioning group is extracting data from the RCGP RSC database to shape UK policy on liver disease. Aims To create a novel ontology to facilitate PBC case finding from primary care provider (PCP) records. Methods RCGP RSC data were collected from participating PCPs in the county of Surrey, UK. PBC diagnostic criteria of the AASLD and EASL guidelines were used to develop 725 data codes to facilitate patient record searches. A scoring system built into the ontology allowed categorization of cases as PBC definite, PBC probable, and PBC unlikely. Results A total of 218,099 records were searched from participating PCPs. Of these, there were 58 PBC definite, 2317 PBC probable, and 215,724 PBC unlikely patients. There were 32 PBC definite patients who did not match to our regional PBC database and were henceforth included as new-found cases. Two of these cases were not labeled as PBC by the PCP. From the PBC unlikely group, 7/215,724 (0.003%) patients were labeled as PBC in secondary care records; however, none of them were coded as having PBC by their PCPs. Conclusions Utilization of the UK National RCGP RSC database supported by novel ontology score has successfully helped us identify (i) new cases of PBC not known to local/regional secondary care providers and (ii) de novo PBC cases. There are many PBC probable cases whose data merit further careful evaluation. Keywords Primary biliary cholangitis · Case finding · Ontology · Primary care · Secondary care
Introduction
Simon de Lusignan and Aftab Ala are joint last/senior authors on this manuscript. Electronic supplementary material The online version of this article (https://doi.org/10.1007/s10620-019-06039-x) contains supplementary material, which is available to authorized users. * Aftab Ala [email protected] 1
Department of Gastroenterology and Hepatology, Royal Surrey County Hospital, Guildford, UK
2
Department of Clinical and Experimental Medicine, FHMS, University of Surrey, Guildford, UK
3
Icahn School of Medicine at Mount Sinai, New York, NY, USA
In 2014, the Lancet standing commission for liver disease published a blueprint for the management of liver disease in the UK. While the main focus and key recommendations explore unmet needs which sit high on the agendas of both National Health Service (NHS) England and
Data Loading...
