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In China, sample-based mortality surveillance systems, such as the Chinese Center for Disease Control and Prevention's disease surveillance points system and the Ministry of Health's vital registration system, have been used for decades to provide nationally representative data on health status for health-care decision-making and performance evaluation. However, neither system provided representative mortality and cause-of-death data at the provincial level to inform regional health service needs and policy priorities. Moreover, the systems overlapped to a considerable extent, thereby entailing a duplication of effort. In 2013, the Chinese Government combined these two systems into an integrated national mortality surveillance system to provide a provincially representative picture of total and cause-specific mortality and to accelerate the development of a comprehensive vital registration and mortality surveillance system for the whole country. This new system increased the surveillance population from 6 to 24% of the Chinese population. The number of surveillance points, each of which covered a district or county, increased from 161 to 605. To ensure representativeness at the provincial level, the 605 surveillance points were selected to cover China's 31 provinces using an iterative method involving multistage stratification that took into account the sociodemographic characteristics of the population. This paper describes the development and operation of the new national mortality surveillance system, which is expected to yield representative provincial estimates of mortality in China for the first time.

To conduct a systematic review of studies reporting on the validity of International Classification of Diseases (ICD) codes for identifying stroke in administrative data. MEDLINE and EMBASE were searched (inception to February 2015) for studies: (a) Using administrative data to identify stroke; or (b) Evaluating the validity of stroke codes in administrative data; and (c) Reporting validation statistics (sensitivity, specificity, positive predictive value (PPV), negative predictive value (NPV), or Kappa scores) for stroke, or data sufficient for their calculation. Additional articles were located by hand search (up to February 2015) of original papers. Studies solely evaluating codes for transient ischaemic attack were excluded. Data were extracted by two independent reviewers; article quality was assessed using the Quality Assessment of Diagnostic Accuracy Studies tool. Seventy-seven studies published from 1976-2015 were included. The sensitivity of ICD-9 430-438/ICD-10 I60-I69 for any cerebrovascular disease was ≥ 82% in most [≥ 50%] studies, and specificity and NPV were both ≥ 95%. The PPV of these codes for any cerebrovascular disease was ≥ 81% in most studies, while the PPV specifically for acute stroke was ≤ 68%. In at least 50% of studies, PPVs were ≥ 93% for subarachnoid haemorrhage (ICD-9 430/ICD-10 I60), 89% for intracerebral haemorrhage (ICD-9 431/ICD-10 I61), and 82% for ischaemic stroke (ICD-9 434/ICD-10 I63 or ICD-9 434&436). For in-hospital deaths, sensitivity was 55%. For cerebrovascular disease or acute stroke as a cause-of-death on death certificates, sensitivity was ≤ 71% in most studies while PPV was ≥ 87%. While most cases of prevalent cerebrovascular disease can be detected using 430-438/I60-I69 collectively, acute stroke must be defined using more specific codes. Most in-hospital deaths and death certificates with stroke as a cause-of-death correspond to true stroke deaths. Linking vital statistics and hospitalization data may improve the ascertainment of fatal stroke.

Clinical coding is critical for hospital reimbursement, quality assessment, and health care planning. In Scandinavia, however, coding is often done by junior doctors or medical secretaries, leading to high rates of coding errors. Artificial intelligence (AI) tools, particularly semiautomatic computer-assisted coding tools, have the potential to reduce the excessive burden of administrative and clinical documentation. To date, much of what we know regarding these tools comes from lab-based evaluations, which often fail to account for real-world complexity and variability in clinical text. This study aims to investigate whether an AI tool developed by by Norwegian Centre for E-health Research at the University Hospital of North Norway, Easy-ICD (International Classification of Diseases), can enhance clinical coding practices by reducing coding time and improving data quality in a realistic setting. We specifically examined whether improvements differ between long and short clinical notes, defined by word count. An AI tool, Easy-ICD, was developed to assist clinical coders and was tested for improving both accuracy and time in a 1:1 crossover randomized controlled trial conducted in Sweden and Norway. Participants were randomly assigned to 2 groups (Sequence AB or BA), and crossed over between coding longer texts (Period 1; mean 307, SD 90; words) versus shorter texts (Period 2; mean 166, SD 55; words), while using our tool versus not using our tool. This was a purely web-based trial, where participants were recruited through email. Coding time and accuracy were logged and analyzed using Mann-Whitney U tests for each of the 2 periods independently, due to differing text lengths in each period. The trial had 17 participants enrolled, but only data from 15 participants (300 coded notes) were analyzed, excluding 2 incomplete records. Based on the Mann-Whitney U test, the median coding time difference for longer clinical text sequences was 123 seconds (P<.001, 95% CI 81-164), representing a 46% reduction in median coding time when our tool was used. For shorter clinical notes, the median time difference of 11 seconds was not significant (P=.25, 95% CI -34 to 8). Coding accuracy improved with Easy-ICD for both longer (62% vs 67%) and shorter clinical notes (60% vs 70%), but these differences were not statistically significant (P=.50and P=.17, respectively). User satisfaction ratings (submitted for 37% of cases) showed slightly higher approval for the tool's suggestions on longer clinical notes. This study demonstrates the potential of AI to transform common tasks in clinical workflows, with ostensible positive impacts on work efficiencies for clinical coding tasks with more demanding longer text sequences. Further studies within hospital workflows are required before these presumed impacts can be more clearly understood.

Clinical coding is the process of extracting key information contained within clinical free-text and representing this information using standardised clinical terminologies. In doing so, unstructured text is transformed into structured data that can be retrieved and analysed more effectively. This process is essential to improving direct care, supporting communication between clinicians and enabling clinical research. However, manual clinical coding is difficult and time consuming, motivating the development and use of natural language processing for automated coding. This work evaluates the quality and consistency of both manual and automated coding of diagnoses from hospital outpatient letters. Using 100 randomly selected letters, two human clinicians performed coding of diagnosis lists to SNOMED CT. Automated coding was also performed using IMO’s Concept Tagger. A gold standard was constructed by a panel of clinicians from a subset of the annotated diagnoses. This was used to evaluate the quality and consistency of manual and automated coding via (1) a distance-based metric, treating SNOMED CT as a graph, and (2) a qualitative metric agreed upon by the panel of clinicians. Correlation between the two metrics was also evaluated. Comparing human and computer-generated codes to the gold standard, the results indicate that humans slightly out-performed automated coding, while both performed notably better when there was only a single diagnosis contained in the free-text description. Automated coding was considered acceptable by the panel of clinicians in approximately 90% of cases.

Background The Charlson comorbidity index is often used to control for confounding in research based on medical databases. There are few studies of the accuracy of the codes obtained from these databases. We examined the positive predictive value (PPV) of the ICD-10 diagnostic coding in the Danish National Registry of Patients (NRP) for the 19 Charlson conditions. Methods Among all hospitalizations in Northern Denmark between 1 January 1998 and 31 December 2007 with a first-listed diagnosis of a Charlson condition in the NRP, we selected 50 hospital contacts for each condition. We reviewed discharge summaries and medical records to verify the NRP diagnoses, and computed the PPV as the proportion of confirmed diagnoses. Results A total of 950 records were reviewed. The overall PPV for the 19 Charlson conditions was 98.0% (95% CI; 96.9, 98.8). The PPVs ranged from 82.0% (95% CI; 68.6%, 91.4%) for diabetes with diabetic complications to 100% (one-sided 97.5% CI; 92.9%, 100%) for congestive heart failure, peripheral vascular disease, chronic pulmonary disease, mild and severe liver disease, hemiplegia, renal disease, leukaemia, lymphoma, metastatic tumour, and AIDS. Conclusion The PPV of NRP coding of the Charlson conditions was consistently high.

Background While clinical coding is intended to be an objective and standardized practice, it is important to recognize that it is not entirely the case. The clinical and bureaucratic practices from event of death to a case being entered into a research dataset are important context for analysing and interpreting this data. Variation in practices can influence the accuracy of the final coded record in two different stages: the reporting of the death certificate, and the International Classification of Diseases (Version 10; ICD-10) coding of that certificate. Methods This study investigated 91,022 deaths recorded in the Scottish Asthma Learning Healthcare System dataset between 2000 and 2017. Asthma-related deaths were identified by the presence of any of ICD-10 codes J45 or J46, in any position. These codes were categorized either as relating to asthma attacks specifically (status asthmatic; J46) or generally to asthma diagnosis (J45). Results We found that one in every 200 deaths in this were coded as being asthma related. Less than 1% of asthma-related mortality records used both J45 and J46 ICD-10 codes as causes. Infection (predominantly pneumonia) was more commonly reported as a contributing cause of death when J45 was the primary coded cause, compared to J46, which specifically denotes asthma attacks. Conclusion Further inspection of patient history can be essential to validate deaths recorded as caused by asthma, and to identify potentially mis-recorded non-asthma deaths, particularly in those with complex comorbidities.

Background Because of their individual rarity, genetic diseases and other types of rare diseases are under-represented in healthcare coding systems; this contributes to a lack of ascertainment and recognition of their importance for healthcare planning and resource allocation, and prevents clinical research from being performed. Methods Orphanet was given the task to develop an inventory of rare diseases and a classification system which could serve as a template to update International terminologies. When the World Health Organization (WHO) launched the revision process of the International Classification of Diseases (ICD), a Topic Advisory Group for rare diseases was established, managed by Orphanet and funded by the European Commission. Results So far 5,400 rare diseases listed in the Orphanet database have an endorsed representation in the foundation layer of ICD-11, and are thus provided with a unique identifier in the Beta version of ICD-11, which is 10 times more than in ICD10. A rare disease linearization is also planned. The current beta version is open for public consultation and comments, and to be used for field testing. The adoption by the World Health Assembly is planned for 2017. Conclusions The overall revision process was carried out with very limited means considering its scope, ambition and strategic significance, and experienced significant hurdles and setbacks. The lack of funding impacted the level of professionalism that could be attained. The contrast between the initially declared goals and the currently foreseen final product is disappointing. In the context of uncertainty around the outcome of the field testing and the potential willingness of countries to adopt this new version, the European Commission Expert Group on Rare Diseases adopted in November 2014 a recommendation for health care coding systems to consider using ORPHA codes in addition to ICD10 codes for rare diseases having no specific ICD10 codes. The Orphanet terminology, classifications and mappings with other terminologies are freely available at www.orphadata.org .

ObjectiveAnalysis of routinely collected electronic health record (EHR) data from primary care is reliant on the creation of codelists to define clinical features of interest. To improve scientific rigour, transparency and replicability, we describe and demonstrate a standardised reproducible methodology for clinical codelist development.DesignWe describe a three-stage process for developing clinical codelists. First, the clear definition a priori of the clinical feature of interest using reliable clinical resources. Second, development of a list of potential codes using statistical software to comprehensively search all available codes. Third, a modified Delphi process to reach consensus between primary care practitioners on the most relevant codes, including the generation of an ‘uncertainty’ variable to allow sensitivity analysis.SettingThese methods are illustrated by developing a codelist for shortness of breath in a primary care EHR sample, including modifiable syntax for commonly used statistical software.ParticipantsThe codelist was used to estimate the frequency of shortness of breath in a cohort of 28 216 patients aged over 18 years who received an incident diagnosis of lung cancer between 1 January 2000 and 30 November 2016 in the Clinical Practice Research Datalink (CPRD).ResultsOf 78 candidate codes, 29 were excluded as inappropriate. Complete agreement was reached for 44 (90%) of the remaining codes, with partial disagreement over 5 (10%). 13 091 episodes of shortness of breath were identified in the cohort of 28 216 patients. Sensitivity analysis demonstrates that codes with the greatest uncertainty tend to be rarely used in clinical practice.ConclusionsAlthough initially time consuming, using a rigorous and reproducible method for codelist generation ‘future-proofs’ findings and an auditable, modifiable syntax for codelist generation enables sharing and replication of EHR studies. Published codelists should be badged by quality and report the methods of codelist generation including: definitions and justifications associated with each codelist; the syntax or search method; the number of candidate codes identified; and the categorisation of codes after Delphi review.

Administrative data are used to generate estimates of sepsis epidemiology and can serve as source for quality indicators. Aim was to compare estimates on sepsis incidence and mortality based on different ICD-code abstraction strategies and to assess their validity for sepsis case identification based on a patient sample not pre-selected for presence of sepsis codes. We used the national DRG-statistics for assessment of population-level sepsis incidence and mortality. Cases were identified by three previously published International Statistical Classification of Diseases (ICD) coding strategies for sepsis based on primary and secondary discharge diagnoses (clinical sepsis codes (R-codes), explicit coding (all sepsis codes) and implicit coding (combined infection and organ dysfunction codes)). For the validation study, a stratified sample of 1120 adult patients admitted to a German academic medical center between 2007-2013 was selected. Administrative diagnoses were compared to a gold standard of clinical sepsis diagnoses based on manual chart review. In the validation study, 151/937 patients had sepsis. Explicit coding strategies performed better regarding sensitivity compared to R-codes, but had lower PPV. The implicit approach was the most sensitive for severe sepsis; however, it yielded a considerable number of false positives. R-codes and explicit strategies underestimate sepsis incidence by up to 3.5-fold. Between 2007-2013, national sepsis incidence ranged between 231-1006/100,000 person-years depending on the coding strategy. In the sample of a large tertiary care hospital, ICD-coding strategies for sepsis differ in their accuracy. Estimates using R-codes are likely to underestimate the true sepsis incidence, whereas implicit coding overestimates sepsis cases. Further multi-center evaluation is needed to gain better understanding on the validity of sepsis coding in Germany.

Background This study assessed the accuracy of three International Classification of Diseases (ICD) codes methods derived from Global Burden of Disease (GBD) sepsis study (modified GBD method) in identifying sepsis, compared to the Angus method. Sources of errors in these methods were also reported. Methods Prospective multicentre, observational, study. Emergency Department patients aged ≥ 16 years with high sepsis risk from nine hospitals in NSW, Australia were screened for clinical sepsis using Sepsis 3 criteria and coded as having sepsis or not using the modified GBD and Angus methods. The three modified GBD methods were: Explicit —sepsis-specific ICD code recorded; Implicit —sepsis-specific code or infection as primary ICD code plus organ dysfunction code; Implicit plus —as for Implicit but infection as primary or secondary ICD code. Agreement between clinical sepsis and ICD coding methods was assessed using Cronbach alpha (α). For false positive cases (ICD-coded sepsis but not clinically diagnosed), the ICD codes leading to those errors were documented. For false negatives (clinically diagnosed sepsis but ICD-coded), uncoded sources of infection and organ dysfunction were documented. Results Of 6869 screened patients, 450 (median age 72.4 years, 48.9% females) met inclusion criteria. Clinical sepsis was diagnosed in 215/450 (47.8%). The explicit, implicit, implicit plus and Angus methods identified sepsis in 108/450 (24.0%), 175/450 (38.9%), 222/450 (49.3%) and 170/450 (37.8%), respectively. Sensitivity was 41.4%, 58.1%, 67.4% and 55.8%, and specificity 91.9%, 78.7%, 67.2% and 79.1%, respectively. Agreement between clinical sepsis and all ICD coding methods was low (α = 0.52–0.56). False positives were 19, 50, and 77, while false negatives were 126, 90, and 70 for the explicit, implicit, and implicit plus methods, respectively. For false positive cases, unspecified urinary tract infection, hypotension and acute kidney failure were commonly assigned infection and organ dysfunction codes. About half (44.3%-55.6%) of the false negative cases didn’t have a pathogen documented. Conclusion The modified GBD method demonstrated low accuracy in identifying sepsis; with the implicit plus method being the most accurate. Errors in identifying sepsis using ICD codes arise mostly from coding for unspecified urinary infections and associated organ dysfunction. Trial registration The study was registered at the ANZCTR (ACTRN12621000333819) on 24 March 2021.