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1.
Stud Health Technol Inform ; 281: 472-476, 2021 May 27.
Artigo em Inglês | MEDLINE | ID: mdl-34042609

RESUMO

Record linkage refers to a range of methods for merging and consolidating data in a manner such that duplicates are detected and false links are avoided. It is crucial for such a task to discern between similarity and identity of entities. This paper explores the implications of the ontological concepts of identity for record linkage (RL) on biomedical data sets. In order to draw substantial conclusions, we use the differentiation between numerical identity, qualitative identity and relational identity. We will discuss the problems of using similarity measures for record pairs and quality identity for ascertaining the real status of these pairs. We conclude that relational identity should be operationalized for RL.


Assuntos
Algoritmos , Registro Médico Coordenado
2.
Stud Health Technol Inform ; 278: 101-109, 2021 May 24.
Artigo em Inglês | MEDLINE | ID: mdl-34042882

RESUMO

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.


Assuntos
Fragilidade , Neoplasias , Humanos , Registro Médico Coordenado , Programas Nacionais de Saúde , Neoplasias/epidemiologia , Sistema de Registros
3.
Stud Health Technol Inform ; 278: 142-149, 2021 May 24.
Artigo em Inglês | MEDLINE | ID: mdl-34042887

RESUMO

The process of consolidating medical records from multiple institutions into one data set makes privacy-preserving record linkage (PPRL) a necessity. Most PPRL approaches, however, are only designed to link records from two institutions, and existing multi-party approaches tend to discard non-matching records, leading to incomplete result sets. In this paper, we propose a new algorithm for federated record linkage between multiple parties by a trusted third party using record-level bloom filters to preserve patient data privacy. We conduct a study to find optimal weights for linkage-relevant data fields and are able to achieve 99.5% linkage accuracy testing on the Febrl record linkage dataset. This approach is integrated into an end-to-end pseudonymization framework for medical data sharing.


Assuntos
Segurança Computacional , Disseminação de Informação , Algoritmos , Humanos , Registro Médico Coordenado , Privacidade
4.
Eur J Epidemiol ; 36(4): 445-452, 2021 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-33796977

RESUMO

The Danish National Register of assisted reproductive technology (ART) was initially established in 1994. The register comprises complete information on all ART procedures in public and private clinics in Denmark from 2013 and onwards, including baseline information on the cause of infertility and a number of health-related patient characteristics. The register enables monitoring and research on infertility treatment and reproductive topics in single women or couples seeking assisted reproduction, and the register is thus a key component of the Danish health information system within human reproduction. We aimed to provide an updated description of the register including advantages and pitfalls when using the register for reproductive epidemiological research, and a description of the accessibility for researchers. The Danish ART register is a valuable tool for epidemiological research. However, the inherent strengths and limitations ought to be in perspective when designing studies and interpreting the study results. Reports with annually aggregated data on ART treatments, can be accessed on the Danish Health Data Authority web page and researchers may obtain access to individual pseudonomized data via secure servers at the Danish Health Data Authority and Statistics Denmark.


Assuntos
Infertilidade Feminina/terapia , Vigilância da População , Técnicas de Reprodução Assistida/estatística & dados numéricos , Adulto , Dinamarca/epidemiologia , Feminino , Humanos , Infertilidade Feminina/epidemiologia , Registro Médico Coordenado , Sistema de Registros , Saúde Reprodutiva
5.
BMJ ; 373: n826, 2021 04 07.
Artigo em Inglês | MEDLINE | ID: mdl-33827854

RESUMO

OBJECTIVE: To describe a novel England-wide electronic health record (EHR) resource enabling whole population research on covid-19 and cardiovascular disease while ensuring data security and privacy and maintaining public trust. DESIGN: Data resource comprising linked person level records from national healthcare settings for the English population, accessible within NHS Digital's new trusted research environment. SETTING: EHRs from primary care, hospital episodes, death registry, covid-19 laboratory test results, and community dispensing data, with further enrichment planned from specialist intensive care, cardiovascular, and covid-19 vaccination data. PARTICIPANTS: 54.4 million people alive on 1 January 2020 and registered with an NHS general practitioner in England. MAIN MEASURES OF INTEREST: Confirmed and suspected covid-19 diagnoses, exemplar cardiovascular conditions (incident stroke or transient ischaemic attack and incident myocardial infarction) and all cause mortality between 1 January and 31 October 2020. RESULTS: The linked cohort includes more than 96% of the English population. By combining person level data across national healthcare settings, data on age, sex, and ethnicity are complete for around 95% of the population. Among 53.3 million people with no previous diagnosis of stroke or transient ischaemic attack, 98 721 had a first ever incident stroke or transient ischaemic attack between 1 January and 31 October 2020, of which 30% were recorded only in primary care and 4% only in death registry records. Among 53.2 million people with no previous diagnosis of myocardial infarction, 62 966 had an incident myocardial infarction during follow-up, of which 8% were recorded only in primary care and 12% only in death registry records. A total of 959 470 people had a confirmed or suspected covid-19 diagnosis (714 162 in primary care data, 126 349 in hospital admission records, 776 503 in covid-19 laboratory test data, and 50 504 in death registry records). Although 58% of these were recorded in both primary care and covid-19 laboratory test data, 15% and 18%, respectively, were recorded in only one. CONCLUSIONS: This population-wide resource shows the importance of linking person level data across health settings to maximise completeness of key characteristics and to ascertain cardiovascular events and covid-19 diagnoses. Although this resource was initially established to support research on covid-19 and cardiovascular disease to benefit clinical care and public health and to inform healthcare policy, it can broaden further to enable a wide range of research.


Assuntos
COVID-19/epidemiologia , Doenças Cardiovasculares/epidemiologia , Registros Eletrônicos de Saúde , Registro Médico Coordenado , Adolescente , Adulto , Idoso , COVID-19/diagnóstico , Teste para COVID-19 , Vacinas contra COVID-19 , Doenças Cardiovasculares/diagnóstico , Criança , Pré-Escolar , Estudos de Coortes , Inglaterra/epidemiologia , Feminino , Hospitalização/estatística & dados numéricos , Humanos , Lactente , Recém-Nascido , Masculino , Pessoa de Meia-Idade , Atenção Primária à Saúde/estatística & dados numéricos , Adulto Jovem
6.
Med J Aust ; 214(6): 271-278, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33665811

RESUMO

OBJECTIVES: To describe patterns of care in New South Wales for men with prostate cancer, and to ascertain factors associated with receiving different types of treatment. DESIGN: Individual patient data record linkage study. SETTING, PARTICIPANTS: 4003 New South Wales men aged 45 years or more enrolled in the population-based 45 and Up Study in whom prostate cancer was first diagnosed during 2006-2013. MAIN OUTCOME MEASURES: Prostate cancer treatment type received; factors statistically associated with treatment received; proportions of patients who consulted radiation oncologists prior to treatment. RESULTS: In total, 1619 of 4003 patients underwent radical prostatectomy (40%), 893 external beam radiotherapy (EBRT) (22%), 183 brachytherapy (5%), 87 chemotherapy (2%), 373 androgen deprivation therapy alone (9%), and 848 no active treatment (21%). 205 of 1628 patients who had radical prostatectomies (13%) had radiation oncology consultations prior to surgery. Radical prostatectomy was more likely for patients aged 45-59 years, with regional stage disease, living 100 km or more from the nearest radiotherapy centre, having partners, or having private health insurance, while lower physical functioning, obesity, and living in areas of greater socio-economic disadvantage reduced the likelihood. EBRT was more likely for patients aged 70-79 years, with non-localised or unknown stage disease, living less than 100 km from the nearest radiotherapy centre, or not having private health insurance, while the likelihood was lower for patients aged 45-59 years or more than 80 years and for those who had several comorbid conditions. CONCLUSIONS: Men with prostate cancer were twice as likely to have radical prostatectomy as to receive EBRT, and fewer than one in seven had consulted radiation oncologists prior to prostatectomy. The treatment received was influenced by several socio-demographic factors. Given the treatment-specific side effects and costs, policies that affect access to different treatments for prostate cancer should be reviewed.


Assuntos
Padrões de Prática Médica , Neoplasias da Próstata/terapia , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Humanos , Masculino , Registro Médico Coordenado , Pessoa de Meia-Idade , New South Wales
7.
BMC Med Inform Decis Mak ; 21(1): 37, 2021 02 02.
Artigo em Inglês | MEDLINE | ID: mdl-33531002

RESUMO

BACKGROUND: Data from clinical registries may be linked to gain additional insights into disease processes, risk factors and outcomes. Identifying information varies from full names, addresses and unique identification codes to statistical linkage keys to no direct identifying information at all. A number of databases in Australia contain the statistical linkage key 581 (SLK-581). Our aim was to investigate the ability to link data using SLK-581 between two national databases, and to compare this linkage to that achieved with direct identifiers or other non-identifying variables. METHODS: The Australian and New Zealand Society of Cardiothoracic Surgeons database (ANZSCTS-CSD) contains fully identified data. The Australian and New Zealand Intensive Care Society database (ANZICS-APD) contains non-identified data together with SLK-581. Identifying data is removed at participating hospitals prior to central collation and storage. We used the local hospital ANZICS-APD data at a large single tertiary centre prior to deidentification and linked this to ANZSCTS-CSD data. We compared linkage using SLK-581 to linkage using non-identifying variables (dates of admission and discharge, age and sex) and linkage using a complete set of unique identifiers. We compared the rate of match, rate of mismatch and clinical characteristics between unmatched patients using the different methods. RESULTS: There were 1283 patients eligible for matching in the ANZSCTS-CSD. 1242 were matched using unique identifiers. Using non-identifying variables 1151/1242 (92.6%) patients were matched. Using SLK-581, 1202/1242 (96.7%) patients were matched. The addition of non-identifying data to SLK-581 provided few additional patients (1211/1242, 97.5%). Patients who did not match were younger, had a higher mortality risk and more non-standard procedures vs matched patients. The differences between unmatched patients using different matching strategies were small. CONCLUSION: All strategies provided an acceptable linkage. SLK-581 improved the linkage compared to non-identifying variables, but was not as successful as direct identifiers. SLK-581 may be used to improve linkage between national registries where identifying information is not available or cannot be released.


Assuntos
Hospitalização , Registro Médico Coordenado , Austrália/epidemiologia , Bases de Dados Factuais , Humanos , Sistema de Registros
8.
Lancet Diabetes Endocrinol ; 9(3): 165-173, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-33549162

RESUMO

BACKGROUND: The prevalence of diabetes has increased in the UK and other high-income countries alongside a substantial decline in cardiovascular mortality. Yet data are scarce on how these trends have changed the causes of death in people with diabetes who have traditionally died primarily of vascular causes. We estimated how all-cause mortality and cause-specific mortality in people with diabetes have changed over time, how the composition of the mortality burden has changed, and how this composition compared with that of the non-diabetes population. METHODS: In this epidemiological analysis of primary care records, we identified 313 907 individuals with diabetes in the Clinical Practice Research Datalink, a well described primary care database, between 2001 to 2018, and linked these data to UK Office for National Statistics mortality data. We assembled serial cross sections with longitudinal follow-up to generate a mixed prevalence and incidence study population of patients with diabetes. We used discretised Poisson regression models to estimate annual death rates for deaths from all causes and 12 specific causes for men and women with diabetes. We also identified age-matched and sex matched (1:1) individuals without diabetes from the same dataset and estimated mortality rates in this group. FINDINGS: Between Jan 1, 2001, and Oct 31, 2018, total mortality declined by 32% in men and 31% in women with diagnosed diabetes. Death rates declined from 40·7 deaths per 1000 person-years to 27·8 deaths per 1000 person-years in men and from 42·7 deaths per 1000 person-years to 29·5 deaths per 1000 person-years in women with diagnosed diabetes. We found similar declines in individuals without diabetes, hence the gap in mortality between those with and without diabetes was maintained over the study period. Cause-specific death rates declined in ten of the 12 cause groups, with exceptions in dementia and liver disease, which increased in both populations. The large decline in vascular disease death rates led to a transition from vascular causes to cancers as the leading contributor to death rates in individuals with diagnosed diabetes and to the gap in death rates between those with and without diabetes. INTERPRETATION: The decline in vascular death rates has been accompanied by a diversification of causes in individuals with diagnosed diabetes and a transition from vascular diseases to cancers as the leading contributor to diabetes-related death. Clinical and preventative approaches must reflect this trend to reduce the excess mortality risk in individuals with diabetes. FUNDING: Wellcome Trust.


Assuntos
Causas de Morte/tendências , Complicações do Diabetes/mortalidade , Diabetes Mellitus/mortalidade , Mortalidade/tendências , Atenção Primária à Saúde/estatística & dados numéricos , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos de Casos e Controles , Causalidade , Diabetes Mellitus/epidemiologia , Inglaterra/epidemiologia , Feminino , Humanos , Masculino , Registro Médico Coordenado , Pessoa de Meia-Idade
9.
J Transl Med ; 19(1): 33, 2021 01 15.
Artigo em Inglês | MEDLINE | ID: mdl-33451317

RESUMO

BACKGROUND: Data analysis for biomedical research often requires a record linkage step to identify records from multiple data sources referring to the same person. Due to the lack of unique personal identifiers across these sources, record linkage relies on the similarity of personal data such as first and last names or birth dates. However, the exchange of such identifying data with a third party, as is the case in record linkage, is generally subject to strict privacy requirements. This problem is addressed by privacy-preserving record linkage (PPRL) and pseudonymization services. Mainzelliste is an open-source record linkage and pseudonymization service used to carry out PPRL processes in real-world use cases. METHODS: We evaluate the linkage quality and performance of the linkage process using several real and near-real datasets with different properties w.r.t. size and error-rate of matching records. We conduct a comparison between (plaintext) record linkage and PPRL based on encoded records (Bloom filters). Furthermore, since the Mainzelliste software offers no blocking mechanism, we extend it by phonetic blocking as well as novel blocking schemes based on locality-sensitive hashing (LSH) to improve runtime for both standard and privacy-preserving record linkage. RESULTS: The Mainzelliste achieves high linkage quality for PPRL using field-level Bloom filters due to the use of an error-tolerant matching algorithm that can handle variances in names, in particular missing or transposed name compounds. However, due to the absence of blocking, the runtimes are unacceptable for real use cases with larger datasets. The newly implemented blocking approaches improve runtimes by orders of magnitude while retaining high linkage quality. CONCLUSION: We conduct the first comprehensive evaluation of the record linkage facilities of the Mainzelliste software and extend it with blocking methods to improve its runtime. We observed a very high linkage quality for both plaintext as well as encoded data even in the presence of errors. The provided blocking methods provide order of magnitude improvements regarding runtime performance thus facilitating the use in research projects with large datasets and many participants.


Assuntos
Segurança Computacional , Privacidade , Algoritmos , Humanos , Registro Médico Coordenado , Software
11.
PLoS One ; 15(12): e0244764, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33382845

RESUMO

BACKGROUND: Sepsis is a growing concern for health systems, but the epidemiology of sepsis is poorly characterised. We evaluated sepsis recording across primary care electronic records, hospital episodes and mortality registrations. METHODS AND FINDINGS: Cohort study including 378 general practices in England from Clinical Practice Research Datalink (CPRD) GOLD database from 2002-2017 with 36,209,676 patient-years of follow-up with linked Hospital Episode Statistics (HES) and Office for National Statistics (ONS) mortality registrations. Incident sepsis episodes were identified for each source. Concurrent records from different sources were identified and age-standardised and age-specific incidence rates compared. Logistic regression analysis evaluated associations of gender, age-group, fifth of deprivation and period of diagnosis with concurrent sepsis recording. There were 20,206 first episodes of sepsis from primary care, 20,278 from HES and 13,972 from ONS. There were 4,117 (20%) first HES sepsis events and 2,438 (17%) mortality records concurrent with incident primary care sepsis records within 30 days. Concurrent HES and primary care records of sepsis within 30 days before or after first diagnosis were higher at younger or older ages and for patients with the most recent period of diagnosis. Those diagnosed during 2007:2011 were less likely to have a concurrent HES record given CPRD compared to those diagnosed during 2012-2017 (odd ratio 0.65, 95% confidence interval 0.60-0.70). At age 85 and older, primary care incidence was 5.22 per 1,000 patient years (95% CI 1.75-11.97) in men and 3.55 (0.87-9.58) in women which increased to 10.09 (4.86-18.51) for men and 7.22 (2.96-14.72) for women after inclusion of all three sources. CONCLUSION: Explicit recording of 'sepsis' is inconsistent across healthcare sectors with a high proportion of non-concurrent records. Incidence estimates are higher when linked data are analysed.


Assuntos
Registros Eletrônicos de Saúde , Registro Médico Coordenado , Atenção Primária à Saúde , Sepse/epidemiologia , Adolescente , Adulto , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Criança , Pré-Escolar , Gerenciamento de Dados , Bases de Dados Factuais , Inglaterra/epidemiologia , Feminino , Humanos , Incidência , Lactente , Recém-Nascido , Masculino , Pessoa de Meia-Idade , Sepse/diagnóstico , Sepse/mortalidade , Adulto Jovem
12.
Rev. esp. patol ; 53(4): 213-217, oct.-dic. 2020. ilus, graf
Artigo em Inglês | IBECS | ID: ibc-200566

RESUMO

BACKGROUND: Inasmuch as the conventional mouse is not an ideal input device for digital pathology, the aim of this study was to evaluate alternative systems with the goal of identifying a natural user interface (NUI) for controlling whole slide images (WSI). DESIGN: Four pathologists evaluated three webcam-based, head-tracking mouse emulators: Enable Viacam (eViacam, CREA Software), Nouse (JLG Health Solutions Inc), and Camera Mouse (CM Solutions Inc). Twenty WSI dermatopathological cases were randomly selected and examined with Image Viewer (Ventana, AZ, USA). The NASA-TLX was used to rate the perceived workload of using these systems and time was recorded. In addition, a satisfaction survey was used. RESULTS: The mean total time needed for diagnosis with Camera Mouse, eViacam, and Nouse was 18'57", 19'37" and 22'32", respectively (57/59/68seconds per case, respectively). The NASA-TLX workload score, where lower scores are better, was 42.1 for eViacam, 53.3 for Nouse and 60.62 for Camera Mouse. This correlated with the pathologists' degree of satisfaction on a scale of 1-5: 3.4 for eViacam, 3 for Nouse, and 2 for Camera Mouse (p < 0.05). CONCLUSIONS: Head-tracking systems enable pathologists to control the computer cursor and virtual slides without their hands using only a webcam as an input device. - Of the three software solutions examined, eViacam seems to be the best of those evaluated in this study, followed by Nouse and, finally, Camera Mouse. - Further studies integrating other systems should be performed in conjunction with software developments to identify the ideal device for digital pathology


INTRODUCCIÓN: Considerando que el ratón convencional no es el controlador ideal en patología digital, el objetivo del estudio fue evaluar sistemas alternativos y tratar de identificar una interfaz natural de usuario para controlar preparaciones digitalizadas. MATERIAL Y MÉTODOS: Cuatro patólogos evaluaron tres emuladores de ratón con reconocimiento facial a través de webcam: eViacam, Nouse y Camera Mouse. Se seleccionaron 20 casos digitalizados de dermatopatología aleatoriamente para su diagnóstico, empleando el software Image Viewer (Ventana, AZ, USA). Se utilizó el sistema NASA-TLX para registrar la carga de trabajo percibida y se grabaron los tiempos. Adicionalmente, se empleó un cuestionario de satisfacción. RESULTADOS: El tiempo medio requerido para diagnosticar con Camera Mouse, eViacam y Nouse fue de 18'57", 19'37"y 22'32", respectivamente (57/59/68 segundos por caso, respectivamente). La carga de trabajo NASA-TLX, donde registros menores implican menor carga, fue de 42,1 para eViacam, 53,3 para Nouse y 60,62 para Camera Mouse, correlacionándose con el grado de satisfacción de los patólogos en una escala de 1-5: 3,4 para eViacam (3,4), Nouse (3) y Camera Mouse (2) (p < 0,05). CONCLUSIONES: El reconocimiento facial posibilita a los patólogos el control del cursor y las preparaciones virtuales sin utilizar las manos, empleando únicamente una webcam como dispositivo de entrada. - De los tres sistemas, eViacam es el mejor software evaluado en este estudio, seguido de Nouse y, finalmente, de Camera Mouse. - Deben ser desarrollados estudios adicionales, integrando otros sistemas, en conjunción con el desarrollo de software para alcanzar el sistema ideal en patología digital


Assuntos
Humanos , Serviço Hospitalar de Patologia/organização & administração , Técnicas Histológicas/métodos , Histocitoquímica/métodos , Registros Eletrônicos de Saúde/instrumentação , Registro Médico Coordenado/instrumentação , Interface Usuário-Computador , Reconhecimento Facial
13.
J Stroke Cerebrovasc Dis ; 29(10): 105151, 2020 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-32912531

RESUMO

BACKGROUND: Understanding and improving EMS stroke care requires linking data from both the prehospital and hospital settings. In the US, such data is collected in separate de-identified registries that cannot be directly linked due to lack of a common, unique patient identifier. In the absence of unique patient identifiers two common approaches to linking databases are deterministic matching, which uses combinations of non-unique matching variables to define matches, and probabilistic matching, which generates estimates of match probability based on the degree of similarity between records. This analysis seeks to compare these two approaches for matching EMS and stroke registry data. METHODS: Stroke cases transported by EMS to Michigan hospitals participating in the Michigan Coverdell Acute Stroke Registry were linked to records from Michigan's EMS Information System (MI-EMSIS) between January 2018 and June 2019. Destination hospital, date-of-service, patient age, date-of-birth, and sex were used to perform deterministic and probabilistic linkages. Match rates and representativeness of the matched samples were compared between the two matching strategies. Multivariable logistic regression was used to identify characteristics associated with successful matching. RESULTS: During the 18-month study period there were 8,828 EMS transported confirmed stroke cases in the registry and 620,907 EMS transports to 38 Coverdell registry-participating hospitals. The probabilistic match linked 5985 (67.7%) strokes to EMS records; the deterministic match linked 4012 (45.5%). Within each strategy the characteristics of matched and unmatched cases were similar, with the exception that deterministically matched cases were less likely to be older than 89 (adjusted odds ratio [aOR]=0.3), white (aOR=0.8), and more likely to have subarachnoid hemorrhage (aOR=1.4) than unmatched cases. CONCLUSION: Probabilistic matching resulted in higher match rates and a more representative sample of EMS transported strokes, suggesting it may be superior in assessing EMS stroke care compared to a deterministic approach.


Assuntos
Mineração de Dados/métodos , Serviços Médicos de Emergência/normas , Serviço Hospitalar de Emergência/normas , Registro Médico Coordenado , Melhoria de Qualidade/normas , Indicadores de Qualidade em Assistência à Saúde/normas , Acidente Vascular Cerebral/terapia , Idoso , Idoso de 80 Anos ou mais , Ambulâncias/normas , Feminino , Humanos , Masculino , Michigan , Pessoa de Meia-Idade , Probabilidade , Sistema de Registros , Acidente Vascular Cerebral/diagnóstico , Resultado do Tratamento
14.
Eur J Epidemiol ; 35(10): 925-935, 2020 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-32860149

RESUMO

Magnetic resonance imaging (MRI) yields numerous tumor-related incidental findings (IFs) which may trigger diagnostics such as biopsies. To clarify these effects, we studied how whole-body MRI IF disclosure in a population-based cohort affected biopsy frequency and the detection of malignancies. Laboratory disclosures were also assessed. Data from 6753 participants in the Study of Health in Pomerania (SHIP) examined between 2008 and 2012 were utilized. All underwent laboratory examinations and 3371 (49.9%) a whole-body MRI. Electronic biopsy reports from 2002 to 2017 were linked to participants and assigned to outcome categories. Biopsy frequency 2 years pre- and post-SHIP was investigated using generalized estimating equations with a negative-binomial distribution. Overall 8208 IFs (laboratory findings outside reference limits: 6839; MRI: 1369) were disclosed to 4707 participants; 2271 biopsy reports belonged to 1200 participants (17.8%). Of these, 938 biopsies occurred pre-SHIP; 1333 post-SHIP (event rate/100 observation years = 6.9 [95% CI 6.5; 7.4]; 9.9 [9.3; 10.4]). Age, cancer history, recent hospitalization, female sex, and IF disclosure were associated with higher biopsy rates. Nonmalignant biopsy results increased more in participants with disclosures (post-/pre-SHIP rate ratio 1.39 [95% CI 1.22; 1.58]) than without (1.09 [95% CI 0.85; 1.38]). Malignant biopsy results were more frequent post-SHIP (rate ratio 1.74 [95% CI 1.27; 2.42]). Biopsies increased after participation in a population-based cohort study with MRI and laboratory IF disclosure. Most biopsies resulted in no findings and few malignancies were diagnosed, indicating potential overtesting and overdiagnosis. A more restrictive policy regarding IF disclosure from research findings is required.


Assuntos
Biópsia/estatística & dados numéricos , Achados Incidentais , Imageamento por Ressonância Magnética/métodos , Imagem Corporal Total/métodos , Adulto , Idoso , Estudos de Coortes , Revelação , Feminino , Humanos , Masculino , Registro Médico Coordenado , Pessoa de Meia-Idade , Vigilância da População , Reprodutibilidade dos Testes , Sensibilidade e Especificidade
15.
Arch Cardiovasc Dis ; 113(8-9): 534-541, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32712203

RESUMO

BACKGROUND: Registries, a cornerstone of contemporary medicine, frequently suffer from incomplete documentation and losses to follow-up. By linking data to a single-payer national claims database, national registries may be enriched and the quality enhanced. AIMS: To explore the value of data from the French Système National des Données de Santé (SNDS) as a resource to enhance the quality of registries when combined with data from electronic case report forms, and to assess the power to minimize data gaps and losses to follow-up. METHODS: A probabilistic algorithm was developed to link and match records in the SNDS with patient data from the electronic case report forms of two registries on transcatheter aortic valve implantation: FRANCE-2 and FRANCE-TAVI. The algorithm created patient profiles from transcatheter aortic valve implantation procedures in the SNDS, matching them as closely as possible to the profiles in the registry databases. The objective was to achieve 90% linkage of the populations. The linked database was analysed for completeness and loss to follow-up. For validation, mortality curves for the linked registry cohorts were compared with those for the original populations. RESULTS: A total of 34,397 unique registries entries were identified, and 89.9% of patients in the SNDS could be linked. Rates of losses to follow-up over 2 years were 1.0% in the linked FRANCE-TAVI population compared with 40.3% based on electronic case report form documentation. For FRANCE-2, 3-year rates of losses to follow-up were 1.7% and 6.1%, respectively. Mortality curves for populations based on SNDS and electronic case report form data were practically superimposable. CONCLUSIONS: Linking data from a single-payer national claims database to national registries using a probabilistic approach is feasible and can close data gaps and practically abolish losses to follow-up in the registry population.


Assuntos
Demandas Administrativas em Assistência à Saúde , Mineração de Dados , Registros Eletrônicos de Saúde , Reembolso de Seguro de Saúde , Registro Médico Coordenado , Algoritmos , Confiabilidade dos Dados , Coleta de Dados , Bases de Dados Factuais , França , Humanos , Projetos Piloto , Sistema de Registros , Fatores de Tempo
16.
Pediatr Clin North Am ; 67(4): 675-682, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32650866

RESUMO

Telehealth and telemedicine services can be a solution for improving accessibility and reducing the cost of health care. Challenges remain in designing, implementing, and sustainably scaling telehealth solutions. Research is lacking on the health impacts and cost-effectiveness of telehealth; more data are needed in the evaluation of telehealth programs, adjusting for potential participant bias and extending the time frame of evaluating impact. In addition, rethinking and addressing the economic incentives and payment for telehealth services, as well as the medical-legal framework for provider competition across geographic regions (and jurisdictions), are needed for greater adoption of telehealth services.


Assuntos
Desenvolvimento de Programas/métodos , Telemedicina/organização & administração , Segurança Computacional , Análise Custo-Benefício , Acesso aos Serviços de Saúde , Humanos , Registro Médico Coordenado , Telemedicina/economia , Telemedicina/instrumentação
17.
Stud Health Technol Inform ; 271: 23-30, 2020 Jun 23.
Artigo em Inglês | MEDLINE | ID: mdl-32578537

RESUMO

BACKGROUND: Privacy-preserving record linkage (PPRL) is the process of detecting dataset entries that refer to the same individual within two independent datasets, without disclosing any personal information. While applied in different fields, it particularly attained importance in the medical sector. One popular PPRL method are Bloom filters. However, Bloom filters were originally used for encoding strings only. OBJECTIVES: This paper evaluates an encoding method specifically designed for numerical data and adjusts it for encoding geocoordinates in Bloom filters. METHODS: The proposed numerical encoding of geocoordinates is compared to the string-based method by using synthetic data. RESULTS: The proposed method for encoding geocoordinates in Bloom filters attains a higher recall and precision than the conventional string encoding. CONCLUSION: Numerical encoding has the potential of increasing the record linkage quality of Bloom filters, as well as their privacy level.


Assuntos
Privacidade , Segurança Computacional , Confidencialidade , Registro Médico Coordenado , Sistemas Computadorizados de Registros Médicos , Nomes , Registros
18.
Stud Health Technol Inform ; 270: 228-232, 2020 Jun 16.
Artigo em Inglês | MEDLINE | ID: mdl-32570380

RESUMO

INTRODUCTION: Computable phenotypes are gaining importance as structured and reproducible method of using electronic health data to identify people with certain clinical conditions. A formal standard is not available for defining and formally representing phenotyping algorithms. In this paper, we have tried to build a formal representation of such phenotyping algorithm. METHODS: We built EN 13606 EHR standard for building clinical archetypes to represent the computable phenotyping algorithm for 'diagnosis of cardiac failure'. As part of this work, we created a set of new clinical archetypes for defining 'cardiac failure diagnosis'. The EN13606 editor called Object Dictionary Client was used which was in-house developed by University College London. We evaluated the ability of EN 13606 to provide clinical archetypes to define EHR phenotyping algorithms using the predefined desiderata for the purpose [Mo et al]. RESULTS: EN 13606 archetypes could represent phenotype components grouped and nested based on their logical meaning. It was possible to build the EHR phenotyping algorithm with the clinical elements and their interrelationships along with hierarchical structure and temporal criteria. But the specific mathematical calculation and temporal relations involved in the algorithm was difficult to incorporate. These will need to be coded and integrated within the clinical information system. These archetypes can be mapped for comparison with the openEHR models. Binding to external clinical terminology is fully supported. However, it does not satisfy all the desiderata defined by Mo et al. A possible way could be an approach using phenotype ontologies and its architectural representation integrated with ISO interoperability. CONCLUSION: The EN13606 archetypes can be used to define the phenotype algorithm that basically identifies patients by a set of clinical characteristics in their records. Phenotype representations defined in EN 13606 do not satisfy all the desiderata proposed by Mo et al. and thus currently has a limited ability to define the computable phenotyping algorithms. Further work is required to make the EN13606 standard to fully support the objective.


Assuntos
Registros Eletrônicos de Saúde , Registro Médico Coordenado/métodos , Sistemas Computadorizados de Registros Médicos/organização & administração , Fenótipo , Medicina de Precisão , Algoritmos , Sistemas de Gerenciamento de Base de Dados , Estudos de Viabilidade , Humanos , Armazenamento e Recuperação da Informação , Londres , Sistemas Computadorizados de Registros Médicos/normas , Modelos Teóricos
19.
Stud Health Technol Inform ; 270: 238-241, 2020 Jun 16.
Artigo em Inglês | MEDLINE | ID: mdl-32570382

RESUMO

One major obstacle to developing precision medicine to its full potential is the privacy concerns related to genomic-data sharing. Even though the academic community has proposed many solutions to protect genomic privacy, these so far have not been adopted in practice, mainly due to their impact on the data utility. We introduce GenoShare, a framework that enables individual citizens to understand and quantify the risks of revealing genome-related privacy-sensitive attributes (e.g., health status, kinship, physical traits) from sharing their genomic data with (potentially untrusted) third parties. GenoShare enables informed decision-making about sharing exact genomic data, by jointly simulating genome-based inference attacks and quantifying the risk stemming from a potential data disclosure.


Assuntos
Bases de Dados Genéticas/ética , Privacidade Genética , Genômica/ética , Disseminação de Informação/ética , Consentimento Livre e Esclarecido , Confidencialidade , Revelação , Genoma , Humanos , Registro Médico Coordenado
20.
Stud Health Technol Inform ; 270: 262-266, 2020 Jun 16.
Artigo em Inglês | MEDLINE | ID: mdl-32570387

RESUMO

The IT- and data protection concept of the FAmiliäres Risiko für das KOloRektale Karzinom (FARKOR) project will be presented. FARKOR is a risk adapted screening-project in Bavaria, Germany focusing on young adults with familial colorectal cancer (CRC). For each participant, data from different sources have to be integrated: Treatment records centrally administered by the resident doctors association (KVB), data from health insurance companies (HIC), and patient reported lifestyle data. Patient privacy rights must be observed. Record Linkage is performed by a central independent trust center. Data are decrypted, integrated and analyzed in a secure part of the scientific evaluation center with no connection to the internet (SECSP). The presented concept guarantees participants privacy through different identifiers, separation of responsibilities, data pseudonymization, public-private key encryption of medical data and encrypted data transfer.


Assuntos
Segurança Computacional , Confidencialidade , Registro Médico Coordenado , Sistemas Computadorizados de Registros Médicos , Privacidade , Alemanha , Humanos , Seguro Saúde , Registro Médico Coordenado/métodos , Direitos do Paciente
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