Technical challenges of providing record linkage services for research

Boyd, James H.; Randall, Sean; Ferrante, Anna; Bauer, Jacqueline K.; Brown, Adrian; Semmens, James B.

doi:10.1186/1472-6947-14-23

Cited by 25 publications

(30 citation statements)

References 22 publications

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“…Institutional Review Boards (IRBs) are also a critical component of clinical research and can become a significant bottleneck due to the dramatic increase, in both volume and complexity of clinical research [5]. A last challenge in the context of distributed research networks is to provide flexible and scalable service for record linkage that are widely needed to enable health researchers to mine longitudinal information for entire populations [2].…”

Section: Discussionmentioning

confidence: 99%

Information Technology for Clinical, Translational and Comparative Effectiveness Research

Daniel

Choquet²

2015

Yearb Med Inform

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Summary Objectives: To select and summarize key constributions to current research and to select best papers published in 2014 in the field of Clinical Research Informatics (CRI).Method: A bibliographic search using a combination of MeSH and free terms search over PubMed on Clinical Research Informatics (CRI) was performed followed by a double-blind literature review. Results: The review process yielded four papers, illustrating various aspects of current research efforts done in the area of CRI. The first paper exemplifies the process of developping a domain ontology for integrating structured, unstructured, and signal data into a coherent structure for patient care as well as clinical research. In the second paper, the authors analysed in five sites’ hospital information system environments in Germany the possibility of implementing a patient recruitment process and provided recommendations for the development of dedicated patient recruitment modules. The third paper describes the IMI EHR4CR project which developed an instance of a platform, providing communication, security and semantic interoperability services to the eleven participating hospitals and ten pharmaceutical companies located in seven European countries. The last paper describes the relation between health status severity and the availability of data in EHR systems. They demonstrate that it introduces a biasis in patient selection for clinical research. Conclusions: Distributed research networks are growing in importance for clinical research and population health surveillance and current research demonstartes that different projects and initiatives could be well placed to deliver international scale solutions to enable the reuse of hospital EHR data to support clinical research studies. Selected articles demonstrate the potential of formal representation of multimodal and multi-level data in supporting data interoperability across clinical research and care domains. With the development of pragmatic research, designed with input from health systems and producing evidence that can be readily used to improve care, a key issue for “learning health care organizations” is to systematically assess the quality of their data.

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Section: Discussionmentioning

confidence: 99%

Information Technology for Clinical, Translational and Comparative Effectiveness Research

Daniel

Choquet²

2015

Yearb Med Inform

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“…Az egy esetre vonatkozó adatok összekapcsolása (úgynevezett "record linkage") napjainkban az epidemiológia elfogadott és gyakran alkalmazott módszere [8].…”

Section: Megbeszélésunclassified

A kórházi adatlapok jelentéseinek alkalmazhatósága epidemiológiai elemzésekre az ischaemiás cerebrovascularis betegségek példája alapján

2015

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Bevezetés: Egybiztosítós egészségügyi fi nanszírozási rendszerben a kórházak által fi nanszírozási célból történő adatszolgáltatások lehetőséget adhatnak epidemiológiai jellegű vizsgálatokra. Célkitűzés: A szerzők Közép-Magyarország 14 neurológiai osztálya adatai alapján vizsgálták a jelentések megbízhatóságát. Módszer: Az elemzést az agyi infarktus (BNO-10 I63+I64) három számjegyű diagnóziskódjaira végezték az Országos Egészségbiztosítási Pénztár számára küldött kórházi jelentésekből kiindulva. Eredmények: Az ischaemiás cerebrovascularis esetek száma 2012 első és má-sodik fél évét összehasonlítva 35%-os csökkenés és 73%-os növekedés között változott: az egyes kórházakban jól kö-vette az ellátási területek 2012. júliusi változását. Kiegészítő informatikai módszerekkel megbecsülhető, hogy az agyinfarktus kórháztól függően az esetek 54-84%-ában akut esemény. A neurológiai osztályok szerepvállalása az ischaemiás cerebrovascularis betegek ellátásában kórházanként 34-98% között változik. A jelentésekben szereplő diagnózisok összességében több mint 99%-ban megfelelnek a betegek zárójelentésében szereplő diagnózisoknak. Nagyobb pontatlanságok (körülbelül 20%) a fi nanszírozási besorolási kódolásokban voltak. Következtetések: A fi nanszí-rozási célból létrehozott adatbázisok megfelelő informatikai módszerek alkalmazásával megbízható adatokat szolgáltatnak a magyarországi cerebrovascularis betegségek epidemiológiai vizsgálatára. Orv. Hetil., 2015, 156(38), 1540-1546.Kulcsszavak: BNO-10, stroke, adminisztratív adatbázis, megbízhatóság, területi elemzés Applicability of hospital reports submitted for reimbursement purposes for epidemiological studies based on the example of ischemic cerebrovascular diseasesIntroduction: In single-payer health care fi nancing systems data extracted from hospital report forms submitted for reimbursement purposes may be used for epidemiological investigations. Aim: Based on data submitted by 14 neurological wards in Central Hungary the authors examined the reliability of these reports. Method: Analyses were performed for the 3-digit codes of the 10th version of the International Classifi cation of Diseases for cerebral infarcts (ICD-10 I63+I64) reported for the National Health Insurance Fund. Results: The number of cases in individual hospitals changed between a decrease by 35% and an increase by 73% from the fi rst to the second half of the year 2012, refl ecting changes in the size of the catchment area of the hospitals in July 2012. Of those with an ICD-10 I63 or I64 discharge diagnosis 54-84% had acute stroke. Neurological wards cared for 34-98% of all stroke patients. The diagnoses submitted for reimbursement purposes corresponded in over 99% to the diagnoses in the hospital discharge reports. Inaccuracies occurred in a larger proportion (about 20%) in coding the DRG fi nancing categories. Conclusions: Databases created from hospital reports submitted for reimbursement purposes can be used reliably in Hungary for stroke epidemiological studies.

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“…Linked data facilitates better measurement of clinical performance and patient health outcomes in health care systems 2. Technical challenges of linking data are mostly considered to be the key barrier of integrating disparate heterogeneous data sources 3. Data privacy legislations can considerably hinder research in a multinational setting 4.…”

Section: Introductionmentioning

confidence: 99%

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

Lusignan²,

Michalakidis

et al. 2018

BMJ Health Care Inform

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PurposeThe 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.MethodThe 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.ResultsWe 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).ConclusionsTIRRE comprehensively assesses the preparedness of data repositories to participate in specific research projects. Multiple contacts about hypothetical participation in research identified few potential sites.

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Technical challenges of providing record linkage services for research

Cited by 25 publications

References 22 publications

Information Technology for Clinical, Translational and Comparative Effectiveness Research

Information Technology for Clinical, Translational and Comparative Effectiveness Research

A kórházi adatlapok jelentéseinek alkalmazhatósága epidemiológiai elemzésekre az ischaemiás cerebrovascularis betegségek példája alapján

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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