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Introduction: The patient journey for residents of New South Wales (NSW) Australia with ST-elevation myocardial infarction (STEMI) often involves transfer between hospitals and these can include stays in hospitals in other jurisdictions. Objective: To estimate the change in enumeration of STEMI hospitalisations and time to subsequent cardiac procedures for NSW residents using cross-jurisdictional linkage of administrative health data. Methods: Records for NSW residents aged 20 years and over admitted to hospitals in NSW and four adjacent jurisdictions (Australian Capital Territory, Queensland, South Australia, and Victoria) between 1 July 2013 and 30 June 2018 with a principal diagnosis of STEMI were linked with records of the Australian Government Medicare Benefits Schedule (MBS). The number of STEMI hospitalisations, and rates of angiography, percutaneous coronary intervention and coronary artery bypass graft were compared for residents of different local health districts within NSW with and without inclusion of cross-jurisdictional data. Results: Inclusion of cross-jurisdictional hospital and MBS data increased the enumeration of STEMI hospitalisations for NSW residents by 8% (from 15,420 to 16,659) and procedure rates from 85.6% to 88.2%. For NSW residents who lived adjacent to a jurisdictional border, hospitalisation counts increased by up to 210% and procedure rates by up to 70 percentage points. Conclusions: Cross-jurisdictional linked hospital data is essential to understand patient journeys of NSW residents who live in border areas and to evaluate adherence to treatment guidelines for STEMI. MBS data are useful where hospital data are not available and for procedures that may be conducted in out-patient settings.
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Hospitalização , Infarto do Miocárdio com Supradesnível do Segmento ST , Idoso , Humanos , Hospitalização/estatística & dados numéricos , Programas Nacionais de Saúde , Pacientes Ambulatoriais , Infarto do Miocárdio com Supradesnível do Segmento ST/epidemiologia , Vitória , Registro Médico CoordenadoRESUMO
BACKGROUND: Although patients with kidney disease may be particularly susceptible to the adverse health effects associated with lead exposure, whether levels of lead found commonly in drinking water are associated with adverse outcomes in patients with ESKD is not known. METHODS: To investigate associations of lead in community water systems with hemoglobin concentrations and erythropoietin stimulating agent (ESA) use among incident patients with ESKD, we merged data from the Environmental Protection Agency (EPA) Safe Drinking Water Information System (documenting average 90th percentile lead concentrations in community water systems during 5 years before dialysis initiation, according to city of residence) with patient-level data from the United States Renal Data System. RESULTS: Among 597,968 patients initiating dialysis in the United States in 2005 through 2017, those in cities with detectable lead levels in community water had significantly lower pre-ESKD hemoglobin concentrations and more ESA use per 0.01 mg/L increase in 90th percentile water lead. Findings were similar for the 208,912 patients with data from the first month of ESKD therapy, with lower hemoglobin and higher ESA use per 0.01 mg/L higher lead concentration. These associations were observed at lead levels below the EPA threshold (0.015 mg/L) that mandates regulatory action. We also observed environmental inequities, finding significantly higher water lead levels and slower declines over time among Black versus White patients. CONCLUSIONS: This first nationwide analysis linking EPA water supply records to patient data shows that even low levels of lead that are commonly encountered in community water systems throughout the United States are associated with lower hemoglobin levels and higher ESA use among patients with advanced kidney disease.
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Água Potável/química , Hematínicos/uso terapêutico , Hemoglobinas/metabolismo , Falência Renal Crônica/sangue , Chumbo/análise , Negro ou Afro-Americano , Idoso , Bases de Dados Factuais , Água Potável/legislação & jurisprudência , Eritropoese , Feminino , Humanos , Falência Renal Crônica/complicações , Falência Renal Crônica/terapia , Masculino , Registro Médico Coordenado , Pessoa de Meia-Idade , Diálise Renal , Estados Unidos , United States Environmental Protection Agency , Abastecimento de Água/legislação & jurisprudência , População BrancaRESUMO
In cancer registries, record linkage procedures are used to link records of the same patient from different health care providers. In the Clinical Cancer Registry of Lower Saxony, a multi-level combination of exact assignment using the statutory health insurance number and a probabilistic procedure with control numbers and address data is applied. The procedure implemented in the register application assigns the incoming messages in this way as far as possible automatically. The aim of the observation carried out was to check the efficiency of the match variables and threshold values used, above which manual assignment is required. Weak points were identified and approaches to solutions were developed.
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Fragilidade , Neoplasias , Humanos , Registro Médico Coordenado , Programas Nacionais de Saúde , Neoplasias/epidemiologia , Sistema de RegistrosRESUMO
BACKGROUND: Data-driven population segmentation analysis utilizes data analytics to divide a heterogeneous population into parsimonious and relatively homogenous groups with similar healthcare characteristics. It is a promising patient-centric analysis that enables effective integrated healthcare interventions specific for each segment. Although widely applied, there is no systematic review on the clinical application of data-driven population segmentation analysis. METHODS: We carried out a systematic literature search using PubMed, Embase and Web of Science following PRISMA criteria. We included English peer-reviewed articles that applied data-driven population segmentation analysis on empirical health data. We summarized the clinical settings in which segmentation analysis was applied, compared and contrasted strengths, limitations, and practical considerations of different segmentation methods, and assessed the segmentation outcome of all included studies. The studies were assessed by two independent reviewers. RESULTS: We retrieved 14,514 articles and included 216 articles. Data-driven population segmentation analysis was widely used in different clinical contexts. 163 studies examined the general population while 53 focused on specific population with certain diseases or conditions, including psychological, oncological, respiratory, cardiovascular, and gastrointestinal conditions. Variables used for segmentation in the studies are heterogeneous. Most studies (n = 170) utilized secondary data in community settings (n = 185). The most common segmentation method was latent class/profile/transition/growth analysis (n = 96) followed by K-means cluster analysis (n = 60) and hierarchical analysis (n = 50), each having its advantages, disadvantages, and practical considerations. We also identified key criteria to evaluate a segmentation framework: internal validity, external validity, identifiability/interpretability, substantiality, stability, actionability/accessibility, and parsimony. CONCLUSIONS: Data-driven population segmentation has been widely applied and holds great potential in managing population health. The evaluations of segmentation outcome require the interplay of data analytics and subject matter expertise. The optimal framework for segmentation requires further research.
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Análise de Dados , Registro Médico Coordenado/métodos , Gestão da Saúde da População , Saúde da População/estatística & dados numéricos , Atenção à Saúde/métodos , Atenção à Saúde/estatística & dados numéricos , Humanos , Reprodutibilidade dos TestesRESUMO
OBJECTIVE: The development of a middleware information model to facilitate better interoperability between Personal and Electronic Health Record systems in order to allow exchange of Patient Generated Health Data and Observations of Daily Leaving between patients and providers in order to encourage patient self-management. MATERIALS AND METHODS: An information model based on HL7 standards for interoperability has been extended to support PGHD and ODL data types. The new information models uses HL7 CDA to represent data, is instantiated as a Protégé ontology and uses a set of mapping rules to transfer data between Personal and Electronic Health Record systems. RESULTS: The information model was evaluated by executing a set of use case scenarios containing data exported from three consumer health apps, transformed to CDA according to developed mapping rules and validated against a CDA schema. This allowed various challenges to emerge as well as revealed gaps in current standards in use and the information model has been refined accordingly. DISCUSSION AND CONCLUSION: Our proposed middleware solution offers a number of advantages. When modifications are made to either a Personal or Health Electronic Health Record system or any integrated consumer app, they can be incorporated by altering only the instantiation of the information model. Our proposition uses current standards in use such as CDA. The solution is applicable to any EHR system with HL7 CDA support.
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Atividades Cotidianas , Prestação Integrada de Cuidados de Saúde/normas , Registros Eletrônicos de Saúde/organização & administração , Registro Médico Coordenado/normas , Modelos Estatísticos , Dados de Saúde Gerados pelo Paciente/normas , Integração de Sistemas , HumanosRESUMO
The aim of this study was to develop a methodology to link mortality data from Internet sources with administrative data from electronic health records and to assess the performance of different record linkage methods. We extracted the electronic health records of all adult patients hospitalized at Rennes comprehensive cancer center between January 1, 2010 and December 31, 2015 and separated them in two groups (training and test set). We also extracted all available online obituaries from the most exhaustive French funeral home website using web scraping techniques. We used and evaluated three different algorithms (deterministic, approximate deterministic and probabilistic) to link the patients' records with online obituaries. We optimized the algorithms using the training set and then evaluated them in the test set. The overall precision was between 98 and 100%. The three classification algorithms performed better for men than women. The probabilistic classification decreased the number of manual reviews, but slightly increased the number of false negatives. To address the problem of long delays in the publication or sharing of mortality data, online obituary data could be considered for real-time surveillance of mortality in patients with cancer because they are easily available and time-efficient.
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Algoritmos , Registros Eletrônicos de Saúde , Internet , Neoplasias/mortalidade , Mineração de Dados , Feminino , Humanos , Registro Médico CoordenadoAssuntos
Sistemas de Apoio a Decisões Clínicas/organização & administração , Informática Médica , Atenção Primária à Saúde/organização & administração , Integração de Sistemas , Registros Eletrônicos de Saúde , Humanos , Informática Médica/organização & administração , Informática Médica/tendências , Registro Médico Coordenado , Atenção Primária à Saúde/tendências , Desenvolvimento de Programas , Software , Reino UnidoRESUMO
BACKGROUND: Pleural mesothelioma (PM) is a rare, highly lethal tumor. A definite consensus on its management has yet to be established. OBJECTIVES: To assess management, overall survival (OS), and their predictors in a cohort of patients from Lombardy, the largest Italian region (about 10 million inhabitants). METHODS: Through a record linkage between Lombardy health care administrative databases, we identified patients diagnosed with PM in 2006-2011 without history of cancer, evaluating their management. OS from PM diagnosis was estimated using the Kaplan-Meier method. Predictors of OS and of treatment were assessed using Cox regression models with time-dependent covariates when appropriate. RESULTS: Out of 1,326 patients, 754 (56.9%) received treatment for PM: 205 (15.5%) underwent surgery, and 696 (52.5%) used chemotherapy. Surgery was spread across several hospitals, and most patients diagnosed in nonspecialized centers (70%) underwent surgery in the same centers. Age at diagnosis was a strong inverse determinant of surgery. Determinants of receiving chemotherapy were younger age, a more recent first diagnosis, and first diagnosis in a specialized center. OS was 45.4% at 1 year, 24.8% at 2 years, and 9.6% at 5 years (median 11 months). OS decreased with age, and was higher for those who underwent surgery, but not for those treated with chemotherapy. CONCLUSIONS: Management of PM varied widely in clinical practice, and significant predictors of treatment were younger age and recent diagnosis, though a high proportion of patients were not treated. Patients were treated in various hospitals, indicating the importance of concentrating serious rare neoplasms in Comprehensive Cancer Centers (as recognized by the Italian Health Ministry).
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Registro Médico Coordenado , Mesotelioma/mortalidade , Mesotelioma/terapia , Neoplasias Pleurais/mortalidade , Neoplasias Pleurais/terapia , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Itália/epidemiologia , Masculino , Pessoa de Meia-IdadeRESUMO
Executives at large health systems across the United States have an interest in developing or expanding telehealth programs. While interest is increasing, telehealth implementation teams (or e-health teams) often face challenges that can hinder the successful transition from pilot to full-scale implementation. Here we share lessons learned by four large health systems that have faced and largely surmounted these challenges. For e-health teams to successfully engage senior leaders in new telehealth initiatives, it is essential to align proposals with the strategic goals of the institution and use patient stories to highlight the benefits of telehealth. To manage the demand for telehealth offerings from patients and dozens of clinical departments, e-health teams should develop a framework for deciding what's most important. To get large medical staffs to adopt telehealth workflows, e-health teams should nurture telehealth champions at each staff level and incentivize them with career development opportunities and rewards. To enroll a heterogeneous population of patients in telehealth programs, e-health teams should use multiple methods of education to accommodate different learning styles. And finally, health systems should develop telehealth-specific outcome measures and repeatedly use them to motivate improvement.
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Redes de Comunicação de Computadores/organização & administração , Instalações de Saúde , Planejamento em Saúde , Objetivos Organizacionais , Participação dos Interessados , Telemedicina/organização & administração , Prestação Integrada de Cuidados de Saúde/métodos , Prioridades em Saúde , Humanos , Registro Médico Coordenado , Qualidade da Assistência à Saúde , Telemedicina/métodos , Estados UnidosRESUMO
Benign prostate hypertrophy (BPH) could be associated with low urinary symptoms requiring medical treatment: 5-alpha-reductase inhibitors (5-ARI) or É-blockers. Two clinical trials investigating 5-ARI use in prostate cancer (PCa) primary prevention highlighted a potential safety signal with an increased risk of high-grade PCa. Later observational studies failed to show similar results but have some limits. This paper focuses on describing the protocol of the CANARI study and its feasibility, as regards the matching process of two pseudo-anonymous databases. The study concerned patients living in the Brittany region (France) between 2010 and 2013. We designed a case-control study nested within a cohort of men treated by medical drugs licensed for symptomatic BPH between 2010 and 2011. Cases were patients with incident PCa diagnosed between 2012 and 2013 identified through French Health database (SNIIRAM). Gleason score was searched through Brittany pathology laboratories. Controls were patients without PCa diagnosis. Local pathology laboratories database was constituted in Brittany, gathering Gleason scores. No unique identification number is available in France; linkage of SNIIRAM and Brittany pathology laboratories database was made by deterministic matching. We matched 859 cases to Gleason grading (119 had Gleason score ≥8 and 740 had Gleason <8); around 22% of cases received 5-ARI and 78% α-blockers or phytotherapy. The CANARI study investigated in a population of men treated for BPH the risk of PCa with 5-ARI, according to Gleason grade thanks to SNIIRAM database enriched by local pathological results.
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Inibidores de 5-alfa Redutase/efeitos adversos , Laboratórios Hospitalares , Patologia Clínica , Hiperplasia Prostática/tratamento farmacológico , Neoplasias da Próstata/induzido quimicamente , Estudos de Casos e Controles , Mineração de Dados , Bases de Dados Factuais , Estudos de Viabilidade , França/epidemiologia , Humanos , Incidência , Masculino , Registro Médico Coordenado , Gradação de Tumores , Segurança do Paciente , Hiperplasia Prostática/diagnóstico , Hiperplasia Prostática/epidemiologia , Neoplasias da Próstata/epidemiologia , Neoplasias da Próstata/patologia , Projetos de Pesquisa , Medição de Risco , Fatores de Risco , Fatores de TempoRESUMO
BACKGROUND: The pseudonymisation algorithm used to link together episodes of care belonging to the same patients in England (HESID) has never undergone any formal evaluation, to determine the extent of data linkage error. OBJECTIVE: To quantify improvements in linkage accuracy from adding probabilistic linkage to existing deterministic HESID algorithms. METHODS: Inpatient admissions to NHS hospitals in England (Hospital Episode Statistics, HES) over 17 years (1998 to 2015) for a sample of patients (born 13/28th of months in 1992/1998/2005/2012). We compared the existing deterministic algorithm with one that included an additional probabilistic step, in relation to a reference standard created using enhanced probabilistic matching with additional clinical and demographic information. Missed and false matches were quantified and the impact on estimates of hospital readmission within one year were determined. RESULTS: HESID produced a high missed match rate, improving over time (8.6% in 1998 to 0.4% in 2015). Missed matches were more common for ethnic minorities, those living in areas of high socio-economic deprivation, foreign patients and those with 'no fixed abode'. Estimates of the readmission rate were biased for several patient groups owing to missed matches, which was reduced for nearly all groups. CONCLUSION: Probabilistic linkage of HES reduced missed matches and bias in estimated readmission rates, with clear implications for commissioning, service evaluation and performance monitoring of hospitals. The existing algorithm should be modified to address data linkage error, and a retrospective update of the existing data would address existing linkage errors and their implications.
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Algoritmos , Confiabilidade dos Dados , Administração Hospitalar , Registro Médico Coordenado/métodos , Adolescente , Criança , Pré-Escolar , Inglaterra , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Modelos Estatísticos , Programas Nacionais de Saúde , Adulto JovemRESUMO
BACKGROUND: The reliable and successful performance of the Revised National Tuberculosis Control Programme (RNTCP) "referral mechanism" is profoundly important in the medical college scenario, and it is an important requirement of the programme to have feedback status report of the referred patients. METHODS: An observational study on tuberculosis (TB) patients referred from Directly Observed Treatment (DOT) Centre, Sri Venkateswara Institute of Medical Sciences (SVIMS) was conducted during the years 2010 to 2012 (n=622). Subjects referred to other TUs within the District but failed to report there within 45 days constituted "cases" and subjects, who obtained treatment from the TUs they were referred to "controls". The initial information or confirmation of registration for treatment status feedback were obtained from patient/Senior Treatment Supervisor (STS)/District Tuberculosis Centre (DTC) levels respectively both before using intervention (Phase I, year 2010) and after using intervention (Phase II, years 2011 and 2012) by sending day-to-day text messaging of referral details of patients to the STS and District Tuberculosis Officer (DTO). RESULTS: During Phase I, the distribution of subjects (n=242) in the ages ≤25, 26-50, and ≥51 years was similar in both the cases and control subjects (p=0.054). Further, there was no statistically significant difference in the median age of the cases and controls [34.5 (interquartile range, IQR 31-51) vs 39 (30-54); p=0.319]. There was no statistically significant difference in other parameters, such as gender distribution (p=0.9748); availability of phone numbers (p=0.9614); type of disease (p=0.8395); and type of case (p=0.0793). In Phase II, the effect of intervention on feedback related parameters showed statistically significant improvement in all the parameters such as initial feedback levels obtained within 15 days (p=0.0077); within 45 days (p<0.0001); above 45 days (p<0.0001); registration status confirmation within 45 days (p=0.0343); mismatch of feedback received by observer (p<0.0001); and telephone number of patients recorded (p<0.0001). CONCLUSION: Our findings suggest that text messaging reminders may be an important tool to achieve optimal feedback response in resource-limited settings.
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Retroalimentação , Encaminhamento e Consulta/organização & administração , Tuberculose/tratamento farmacológico , Adulto , Distribuição por Idade , Telefone Celular/estatística & dados numéricos , Feminino , Humanos , Índia , Masculino , Registro Médico Coordenado , Pessoa de Meia-Idade , Programas Nacionais de Saúde/organização & administração , Programas Nacionais de Saúde/estatística & dados numéricos , Encaminhamento e Consulta/estatística & dados numéricos , Envio de Mensagens de Texto , Adulto JovemRESUMO
BACKGROUND: Linkage of administrative data sources often relies on probabilistic methods using a set of common identifiers (e.g. sex, date of birth, postcode). Variation in data quality on an individual or organisational level (e.g. by hospital) can result in clustering of identifier errors, violating the assumption of independence between identifiers required for traditional probabilistic match weight estimation. This potentially introduces selection bias to the resulting linked dataset. We aimed to measure variation in identifier error rates in a large English administrative data source (Hospital Episode Statistics; HES) and to incorporate this information into match weight calculation. METHODS: We used 30,000 randomly selected HES hospital admissions records of patients aged 0-1, 5-6 and 18-19 years, for 2011/2012, linked via NHS number with data from the Personal Demographic Service (PDS; our gold-standard). We calculated identifier error rates for sex, date of birth and postcode and used multi-level logistic regression to investigate associations with individual-level attributes (age, ethnicity, and gender) and organisational variation. We then derived: i) weights incorporating dependence between identifiers; ii) attribute-specific weights (varying by age, ethnicity and gender); and iii) organisation-specific weights (by hospital). Results were compared with traditional match weights using a simulation study. RESULTS: Identifier errors (where values disagreed in linked HES-PDS records) or missing values were found in 0.11% of records for sex and date of birth and in 53% of records for postcode. Identifier error rates differed significantly by age, ethnicity and sex (p < 0.0005). Errors were less frequent in males, in 5-6 year olds and 18-19 year olds compared with infants, and were lowest for the Asian ethic group. A simulation study demonstrated that substantial bias was introduced into estimated readmission rates in the presence of identifier errors. Attribute- and organisational-specific weights reduced this bias compared with weights estimated using traditional probabilistic matching algorithms. CONCLUSIONS: We provide empirical evidence on variation in rates of identifier error in a widely-used administrative data source and propose a new method for deriving match weights that incorporates additional data attributes. Our results demonstrate that incorporating information on variation by individual-level characteristics can help to reduce bias due to linkage error.
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Hospitalização/estatística & dados numéricos , Armazenamento e Recuperação da Informação/estatística & dados numéricos , Registro Médico Coordenado/métodos , Sistema de Registros/estatística & dados numéricos , Adolescente , Algoritmos , Viés , Criança , Pré-Escolar , Simulação por Computador , Feminino , Humanos , Lactente , Recém-Nascido , Armazenamento e Recuperação da Informação/métodos , Masculino , Programas Nacionais de Saúde/estatística & dados numéricos , Reino Unido , Adulto JovemRESUMO
Purpose To compare the risks of serious health outcomes among hematopoietic cell transplantation (HCT) survivors versus a matched population of patients with cancer who did not undergo HCT, where the primary difference may be exposure to HCT. Methods Two-year HCT survivors treated at a comprehensive cancer center from 1992 through 2009 who were Washington State residents (n = 1,792; 52% allogeneic and 90% hematologic malignancies) were frequency matched by demographic characteristics and underlying cancer diagnosis (as applicable) to non-HCT 2-year cancer survivors, using the state cancer registry (n = 5,455) and the general population (n = 16,340) using driver's license files. Late outcomes for all three cohorts were ascertained from the state hospital discharge and death registries; subsequent cancers were ascertained from the state cancer registry. Results After median follow-up of 7.1 years, HCT survivors experienced significantly greater rates of hospitalization compared with matched non-HCT cancer survivors (280 v 173 episodes per 1,000 person-years, P < .001) and greater all-cause mortality (hazard ratio [HR], 1.1; 95% CI, 1.01 to 1.3). HCT survivors had more hospitalizations or death with infections (10-year cumulative incidence, 31% v 22%; HR, 1.4; 95% CI, 1.3 to 1.6) and respiratory complications (cumulative incidence, 27% v 20%; HR, 1.4; 95% CI, 1.2 to 1.5). Risks of digestive, skin, and musculoskeletal complications also were greater among HCT versus non-HCT cancer survivors. The two groups had similar risks of circulatory complications and second cancers. Both HCT and non-HCT cancer survivors had significantly greater 10-year cumulative incidences of all major organ-system outcomes versus the general population. Conclusion History of HCT was associated with late morbidity and mortality among cancer survivors. In particular, clinicians who care for HCT survivors should be aware of their high rates of late respiratory and infectious complications.
Assuntos
Neoplasias Hematológicas/mortalidade , Neoplasias Hematológicas/cirurgia , Transplante de Células-Tronco Hematopoéticas/mortalidade , Sobreviventes , Adulto , Idoso , Causas de Morte , Doenças Transmissíveis/mortalidade , Feminino , Neoplasias Hematológicas/diagnóstico , Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Humanos , Incidência , Masculino , Registro Médico Coordenado , Pessoa de Meia-Idade , Readmissão do Paciente , Complicações Pós-Operatórias/mortalidade , Complicações Pós-Operatórias/terapia , Sistema de Registros , Doenças Respiratórias/mortalidade , Medição de Risco , Fatores de Risco , Fatores de Tempo , Resultado do Tratamento , Washington/epidemiologia , Adulto JovemRESUMO
BACKGROUND: The implementation of telemonitoring at scale has been less successful than anticipated, often hindered by clinicians' perceived increase in workload. One important factor has been the lack of integration of patient generated data (PGD) with the electronic medical record (EMR). Clinicians have had problems accessing PGD on telehealth systems especially in patient consultations in primary care. OBJECTIVE: To design a method to produce a report of PGD that is available to clinicians through their routine EMR system. METHOD: We modelled a system with a use case approach using Unified Modelling Language to enable us to design a method of producing the required report. Anonymised PGD are downloaded from a third-party telehealth system to National Health Service (NHS) systems and linked to the patient record available in the hospital recording system using the patient NHS ID through an interface accessed by healthcare professionals. The telehealth data are then processed into a report using the patient record. This report summarises the readings in graphical and tabular form with an average calculated and with a recommended follow-up suggested if required. The report is then disseminated to general practitioner practices through routine document distribution pathways. RESULTS: This addition to the telehealth system is viewed positively by clinicians. It has helped to greatly increase the number of general practices using telemonitoring to manage blood pressure in NHS Lothian.
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Sistemas Computacionais/estatística & dados numéricos , Registros Eletrônicos de Saúde , Medicina Geral/métodos , Registro Médico Coordenado/métodos , Telemedicina , Pessoal de Saúde , Humanos , Programas Nacionais de Saúde , Atenção Primária à Saúde , Reino UnidoRESUMO
OBJECTIVES: Ten years ago, the METEOR tool was developed to simulate treatment-to-target and create an international research database. The development of the METEOR tool and database, research opportunities and future perspectives are described. METHODS: The METEOR tool is a free, online, internationally available tool in which daily practice visits of all rheumatoid arthritis patients visiting a rheumatologist can be registered. In the tool, disease characteristics, patient- and physician-reported outcomes and prescribed treatment could be entered. These can be subsequently displayed in powerful graphics, facilitating treatment decisions and patient-physician interactions. An upload facility is also available, by which data from local electronic health record systems or registries can be integrated into the METEOR database. This is currently being actively used in, among other countries, the Netherlands, Portugal and India. RESULTS: Since an increasing number of hospitals use electronic health record systems, the upload facility is being actively used by an increasing number of sites, enabling them to benefit from the benchmark and research opportunities of METEOR. Enabling a connection between local registries and METEOR is a well established but time-consuming process for which an IT-specialist of METEOR and the local registry are necessary. However, once this process has been finished, data can be uploaded regularly and relatively easily according to a pre-specified format. The METEOR database currently contains data from >39,000 patients and >200,000 visits, from 32 different countries and is ever increasing. Continuous efforts are being undertaken to increase the quality of data in the database. CONCLUSIONS: Since METEOR was founded 10 years ago, many rheumatologists worldwide have used the METEOR tool to follow-up their patients and improve the quality of care they provide to their patients. Combined with uploaded data, this has led to an extensive growth of the database. It now offers a unique opportunity to study daily practice care and to perform research regarding cross-country differences in a large, worldwide setting, which could provide important knowledge about disease and its treatment in different geographic and clinical settings.
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Artrite Reumatoide/terapia , Bases de Dados Factuais , Pesquisa sobre Serviços de Saúde/métodos , Sistema de Registros , Reumatologia/métodos , Artrite Reumatoide/diagnóstico , Artrite Reumatoide/fisiopatologia , Prestação Integrada de Cuidados de Saúde , Registros Eletrônicos de Saúde , Previsões , Pesquisa sobre Serviços de Saúde/tendências , Disparidades em Assistência à Saúde , Humanos , Cooperação Internacional , Registro Médico Coordenado , Indicadores de Qualidade em Assistência à Saúde , Reumatologia/tendências , Fatores de Tempo , Resultado do TratamentoRESUMO
INTRODUCTION: Young people with drug and alcohol problems are likely to have poorer health and other psychosocial outcomes than other young people. Residential treatment programmes have been shown to lead to improved health and related outcomes for young people in the short term. There is very little robust research showing longer term outcomes or benefits of such programmes. This paper describes an innovative protocol to examine the longer term outcomes and experiences of young people referred to a residential life management and treatment programme in Australia designed to address alcohol and drug issues in a holistic manner. METHODS AND ANALYSIS: This is a mixed-methods study that will retrospectively and prospectively examine young people's pathways into and out of a residential life management programme. The study involves 3 components: (1) retrospective data linkage of programme data to health and criminal justice administrative data sets, (2) prospective cohort (using existing programme baseline data and a follow-up survey) and (3) qualitative in-depth interviews with a subsample of the prospective cohort. The study will compare findings among young people who are referred and (a) stay 30â days or more in the programme (including those who go on to continuing care and those who do not); (b) start, but stay fewer than 30â days in the programme; (c) are assessed, but do not start the programme. ETHICS AND DISSEMINATION: Ethics approval has been sought from several ethics committees including a university ethics committee, state health departments and an Aboriginal-specific ethics committee. The results of the study will be published in peer-reviewed journals, presented at research conferences, disseminated via a report for the general public and through Facebook communications. The study will inform the field more broadly about the value of different methods in evaluating programmes and examining the pathways and trajectories of vulnerable young people.
Assuntos
Tratamento Domiciliar , Transtornos Relacionados ao Uso de Substâncias/terapia , Adolescente , Alcoolismo/economia , Alcoolismo/terapia , Austrália , Crime/prevenção & controle , Feminino , Redução do Dano , Humanos , Entrevistas como Assunto , Masculino , Registro Médico Coordenado , Estudos Prospectivos , Pesquisa Qualitativa , Projetos de Pesquisa , Tratamento Domiciliar/economia , Tratamento Domiciliar/métodos , Estudos Retrospectivos , Centros de Tratamento de Abuso de Substâncias , Transtornos Relacionados ao Uso de Substâncias/economia , Inquéritos e Questionários , Fatores de Tempo , Resultado do Tratamento , Adulto JovemRESUMO
OBJECTIVE: The purpose of this study was to collect objective data concerning the prescription of vitamin supplementation treatment in hospitalized patients at risk for alcohol withdrawal. METHODS: This study compared the total number of orders for folate, thiamine, and multivitamins with assessments ordered using the revised Clinical Institute Withdrawal Assessment of Alcohol (CIWA-Ar) during 2 congruent time periods in a hospital system before and after these orders were linked to determine the effectiveness of the link. Frequency counts of the order sets containing CIWA-Ar with and without doses of folate, thiamine, and multivitamins were extracted from the electronic medical record. One set of frequencies was collected between January 1, 2012, and June 15, 2012. The second set was collected between January 1, 2013, and June 15, 2013, after the intervention in which these orders were linked. Percentages were calculated from the frequency counts. RESULTS: Results of the study showed that before the intervention linking these orders, thiamine was ordered only 41 times, folate 42 times, and multivitamin 42 times, whereas CIWA-Ar was ordered 1228 times within the same time parameters (3.34%, 3.42%, and 3.42%, respectively), for a total average rate of 10.18%. After orders for thiamine, folate, and multivitamins were linked to the CIWA-Ar, the average rate of these vitamins being ordered with CIWA-Ar reached 77.94%. CONCLUSION: This study found that linking CIWA-Ar and vitamin supplementation orders within the electronic medical record increases the likelihood of them being ordered together. We propose that this can be applied to other treatments that are commonly ordered together and that such orders should be linked to improve the standards of care for all patients.
Assuntos
Registros Eletrônicos de Saúde/organização & administração , Etanol/efeitos adversos , Padrões de Prática Médica , Síndrome de Abstinência a Substâncias/tratamento farmacológico , Humanos , Registro Médico Coordenado , Vitaminas/uso terapêuticoRESUMO
This brief paper describes a recent exercise undertaken within a hospital and health service in south-east Queensland to attempt to link patient records between general practice and hospital services. It describes the technical and governance processes undertaken to achieve this link and the challenges experienced to date in linking the two data sources.