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The breakdown of scale invariance in turbulent flows, known as multifractal scaling, is considered a cornerstone of turbulence. In solar wind turbulence, a monofractal behavior can be observed at electron scales, in contrast to larger scales where multifractality always prevails. Why scale invariance appears at electron scales is a challenging theoretical puzzle with important implications for understanding solar wind heating and acceleration. We investigate this long-standing problem using direct numerical simulations of three-dimensional electron reduced magnetohydrodynamics. Both weak and strong kinetic Alfvén waves turbulence regimes are studied in the balanced case. After recovering the expected theoretical predictions for the magnetic spectra, a higher-order multiscale statistical analysis is performed. This study reveals a striking difference between the two regimes, with the emergence of monofractality only in weak turbulence, whereas strong turbulence is multifractal. This result, combined with recent studies, shows the relevance of collisionless weak KAW turbulence to describe the solar wind at electron scales.
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AIM: The aim of this study was to develop an instrument to measure competencies of gerontological nursing faculty. BACKGROUND: There is no accepted instrument to assess competencies of gerontological nursing faculty. METHOD: To develop the Gerontological Nursing Competency Questionnaire (GNCQ), we used a modified Delphi technique focused on consensus building among experts from the National Hartford Center for Gerontological Nursing Excellence. The 25-item GNCQ measures confidence in knowledge, confidence in teaching, and interest in further training in gerontological nursing. The instrument was piloted in a large nursing department at a university in southern California. RESULTS: Low faculty competencies in knowledge and teaching and low interest in further training were observed. CONCLUSION: The GNCQ demonstrated initial content validity and an ability to identify key areas of deficiency in knowledge and teaching among nursing faculty. It may be used for improvement initiatives in gerontological nursing programs.
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Competencia Clínica , Técnica Delphi , Docentes de Enfermería , Enfermería Geriátrica , Humanos , Enfermería Geriátrica/educación , Enfermería Geriátrica/normas , Encuestas y Cuestionarios , Docentes de Enfermería/normas , Competencia Clínica/normas , Femenino , Masculino , California , Adulto , Persona de Mediana Edad , Reproducibilidad de los ResultadosRESUMEN
Sickle cell anaemia is a hereditary blood disorder that attacks the red blood cells and deforms them, giving them a sickle shape. Sickle cell anaemia is a serious health problem in the West African country of Niger. Moreover, the cost associated with medical care is very high. The main objective of this study is to contribute to the valorisation of Flueggea virosa (Roxb. ex Willd.) Royle (aerial part), Kigelia africana (lam), and Benth (leaves) from Niger were used to treat sickle cell disease using aqueous and ethanolic extracts of phytochemical compounds. To achieve this objective, the evaluation of anti-sickle cell activity was carried out in vitro using the Emmel technique through the normalisation rate. The analyses showed that the aqueous and ethanolic extracts contained various classes of bioactive substances known for their valuable biological activities. The chemical composition rich in bioactive compounds led to very good results in biological assays. Thus, from a dose of 0.05 mg/mL, the ethanolic extracts of the two plants normalised up to 75% of the sickle cells. As the rate of normalisation was shown to be dose-dependent, at a dose of 10 mg/mL, the ethanolic extracts showed the best rates of sickle cell normalisation, with 95% for F. virosa and 93% for K. africana. Phytochemical screening was used to correlate the secondary metabolite and anti-sickle cell activities of the extracts from the two plants. These results may justify the use of these two species in traditional medicine for the treatment of sickle cell disease in Niger. The inclusion of these plants in phytomedicines could provide significant relief to people suffering from sickle cell disease.
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Introduction: The hippocampus and striatum have dissociable roles in memory and are necessary for spatial and procedural/cued learning, respectively. Emotionally charged, stressful events promote the use of striatal- over hippocampus-dependent learning through the activation of the amygdala. An emerging hypothesis suggests that chronic consumption of addictive drugs similarly disrupt spatial/declarative memory while facilitating striatum-dependent associative learning. This cognitive imbalance could contribute to maintain addictive behaviors and increase the risk of relapse. Methods: We first examined, in C57BL/6 J male mice, whether chronic alcohol consumption (CAC) and alcohol withdrawal (AW) might modulate the respective use of spatial vs. single cue-based learning strategies, using a competition protocol in the Barnes maze task. We then performed in vivo electrophysiological studies in freely moving mice to assess learning-induced synaptic plasticity in both the basolateral amygdala (BLA) to dorsal hippocampus (dCA1) and BLA to dorsolateral striatum (DLS) pathways. Results: We found that both CAC and early AW promote the use of cue-dependent learning strategies, and potentiate plasticity in the BLA â DLS pathway while reducing the use of spatial memory and depressing BLA â dCA1 neurotransmission. Discussion: These results support the view that CAC disrupt normal hippocampo-striatal interactions, and suggest that targeting this cognitive imbalance through spatial/declarative task training could be of great help to maintain protracted abstinence in alcoholic patients.
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A link between gut dysbiosis and the pathogenesis of brain disorders has been identified. A role for gut bacteria in drug reward and addiction has been suggested but very few studies have investigated their impact on brain and behavioral responses to addictive drugs so far. In particular, their influence on nicotine's addiction-like processes remains unknown. In addition, evidence shows that glial cells shape the neuronal activity of the mesolimbic system but their regulation, within this system, by the gut microbiome is not established. We demonstrate that a lack of gut microbiota in male mice potentiates the nicotine-induced activation of sub-regions of the mesolimbic system. We further show that gut microbiota depletion enhances the response to nicotine of dopaminergic neurons of the posterior ventral tegmental area (pVTA), and alters nicotine's rewarding and aversive effects in an intra-VTA self-administration procedure. These effects were not associated with gross behavioral alterations and the nicotine withdrawal syndrome was not impacted. We further show that depletion of the gut microbiome modulates the glial cells of the mesolimbic system. Notably, it increases the number of astrocytes selectively in the pVTA, and the expression of postsynaptic density protein 95 in both VTA sub-regions, without altering the density of the astrocytic glutamatergic transporter GLT1. Finally, we identify several sub-populations of microglia in the VTA that differ between its anterior and posterior sub-parts, and show that they are re-organized in conditions of gut microbiota depletion. The present study paves the way for refining our understanding of the pathophysiology of nicotine addiction.
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Microbioma Gastrointestinal , Síndrome de Abstinencia a Sustancias , Ratones , Masculino , Animales , Nicotina/farmacología , Área Tegmental Ventral , Dopamina/metabolismo , Recompensa , Síndrome de Abstinencia a Sustancias/metabolismo , Neuroglía/metabolismoRESUMEN
BACKGROUND: Advancing the use of genomic data with routinely collected health data holds great promise for health care and research. Increasing the use of these data is a high priority to understand and address the causes of disease. OBJECTIVE: This study aims to provide an outline of the use of genomic data alongside routinely collected data in health research to date. As this field prepares to move forward, it is important to take stock of the current state of play in order to highlight new avenues for development, identify challenges, and ensure that adequate data governance models are in place for safe and socially acceptable progress. METHODS: We conducted a literature review to draw information from past studies that have used genomic and routinely collected data and conducted interviews with individuals who use these data for health research. We collected data on the following: the rationale of using genomic data in conjunction with routinely collected data, types of genomic and routinely collected data used, data sources, project approvals, governance and access models, and challenges encountered. RESULTS: The main purpose of using genomic and routinely collected data was to conduct genome-wide and phenome-wide association studies. Routine data sources included electronic health records, disease and death registries, health insurance systems, and deprivation indices. The types of genomic data included polygenic risk scores, single nucleotide polymorphisms, and measures of genetic activity, and biobanks generally provided these data. Although the literature search showed that biobanks released data to researchers, the case studies revealed a growing tendency for use within a data safe haven. Challenges of working with these data revolved around data collection, data storage, technical, and data privacy issues. CONCLUSIONS: Using genomic and routinely collected data holds great promise for progressing health research. Several challenges are involved, particularly in terms of privacy. Overcoming these barriers will ensure that the use of these data to progress health research can be exploited to its full potential.
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Registros Electrónicos de Salud , Genómica , Recolección de Datos , Humanos , Almacenamiento y Recuperación de la Información , Sistema de RegistrosRESUMEN
The zeroth law is one of the oldest conjectures in turbulence that is still unproven. Here, we consider weak solutions of one-dimensional compressible magnetohydrodynamics and demonstrate that the lack of smoothness of the fields introduces a dissipative term, named inertial dissipation, into the expression of energy conservation that is neither viscous nor resistive in nature. We propose exact solutions assuming that the kinematic viscosity and the magnetic diffusivity are equal, and we demonstrate that the associated inertial dissipation is positive and equal on average to the mean viscous dissipation rate in the limit of small viscosity, proving the conjecture of the zeroth law of turbulence and the existence of an anomalous dissipation. As an illustration, we evaluate the shock heating produced by discontinuities detected by Voyager in the solar wind around 5 AU. We deduce a heating rate of â¼10^{-18}Jm^{-3}s^{-1}, which is significantly higher than the value obtained from the turbulent fluctuations. This suggests that collisionless shocks can be a dominant source of heating in the outer solar wind.
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Nicotine addiction, through smoking, is the principal cause of preventable mortality worldwide. Human genome-wide association studies have linked polymorphisms in the CHRNA5-CHRNA3-CHRNB4 gene cluster, coding for the α5, α3, and ß4 nicotinic acetylcholine receptor (nAChR) subunits, to nicotine addiction. ß4*nAChRs have been implicated in nicotine withdrawal, aversion, and reinforcement. Here we show that ß4*nAChRs also are involved in non-nicotine-mediated responses that may predispose to addiction-related behaviors. ß4 knock-out (KO) male mice show increased novelty-induced locomotor activity, lower baseline anxiety, and motivational deficits in operant conditioning for palatable food rewards and in reward-based Go/No-go tasks. To further explore reward deficits we used intracranial self-administration (ICSA) by directly injecting nicotine into the ventral tegmental area (VTA) in mice. We found that, at low nicotine doses, ß4KO self-administer less than wild-type (WT) mice. Conversely, at high nicotine doses, this was reversed and ß4KO self-administered more than WT mice, whereas ß4-overexpressing mice avoided nicotine injections. Viral expression of ß4 subunits in medial habenula (MHb), interpeduncular nucleus (IPN), and VTA of ß4KO mice revealed dose- and region-dependent differences: ß4*nAChRs in the VTA potentiated nicotine-mediated rewarding effects at all doses, whereas ß4*nAChRs in the MHb-IPN pathway, limited VTA-ICSA at high nicotine doses. Together, our findings indicate that the lack of functional ß4*nAChRs result in deficits in reward sensitivity including increased ICSA at high doses of nicotine that is restored by re-expression of ß4*nAChRs in the MHb-IPN. These data indicate that ß4 is a critical modulator of reward-related behaviors.SIGNIFICANCE STATEMENT Human genetic studies have provided strong evidence for a relationship between variants in the CHRNA5-CHRNA3-CHRNB4 gene cluster and nicotine addiction. Yet, little is known about the role of ß4 nicotinic acetylcholine receptor (nAChR) subunit encoded by this cluster. We investigated the implication of ß4*nAChRs in anxiety-, food reward- and nicotine reward-related behaviors. Deletion of the ß4 subunit gene resulted in an addiction-related phenotype characterized by low anxiety, high novelty-induced response, lack of sensitivity to palatable food rewards and increased intracranial nicotine self-administration at high doses. Lentiviral vector-induced re-expression of the ß4 subunit into either the MHb or IPN restored a "stop" signal on nicotine self-administration. These results suggest that ß4*nAChRs provide a promising novel drug target for smoking cessation.
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Condicionamiento Operante/efectos de los fármacos , Actividad Motora/efectos de los fármacos , Proteínas del Tejido Nervioso/metabolismo , Nicotina/administración & dosificación , Receptores Nicotínicos/metabolismo , Recompensa , Autocontrol , Área Tegmental Ventral/efectos de los fármacos , Animales , Conducta Animal/efectos de los fármacos , Aprendizaje Discriminativo/efectos de los fármacos , Masculino , Ratones , Ratones Noqueados , Motivación/efectos de los fármacos , Proteínas del Tejido Nervioso/genética , Agonistas Nicotínicos/administración & dosificación , Receptores Nicotínicos/genética , AutoadministraciónRESUMEN
BACKGROUND: India accounts for 18% of the global population and 26·6% of global suicide deaths. However, robust population-based, nationally representative data on suicidality are not readily available to plan and implement suicide prevention programmes in India. We aimed to investigate the prevalence and sociodemographic differentials of suicidality using data from the National Mental Health Survey (NMHS) of India, 2015-16. METHODS: Trained field data collectors from the NMHS obtained information on suicidality (during the past month) from a community sample of adults aged 18 years and older using the suicidality module of the Mini-International Neuropsychiatric Interview (version 6.0). Suicidality was categorised as low, moderate, high, and overall (representing any suicidality), and examined for sociodemographic differentials using normalised sampling weights. For each of the 12 surveyed states, we calculated the age-standardised suicidality prevalence for men and women, men-to-women ratio of weighted suicidality prevalence, ratio of suicidality to suicide deaths, and ratio of suicide attempts to suicide deaths. We used logistic regression analysis to examine the association between sociodemographic factors and overall suicidality and severity. FINDINGS: Among 34â748 participants with complete interviews, 5·1% (95% CI 4·7-5·6) had some level of suicidality, and 0·3% (0·2-0·4) had at least one suicide attempt in the past month. The prevalence of overall suicidality was higher in women (6·0% [5·4-6·6]) than in men (4·1% [3·7-4·6]). The prevalence of overall suicidality was highest in those aged 40-49 years among women and in those aged 60 years or older among men. Compared with their counterparts, individuals with lower educational attainment, individuals residing in urban metropolitan cities, individuals who were widowed, separated, or divorced, and unemployed individuals had a higher prevalence of overall suicidality. The men-to-women ratio of overall suicidality prevalence for India was 0·68 (range 0·55-0·85). For every death by suicide in India, there were more than 200 people with suicidality and more than 15 suicide attempts. We found variations for various severities of suicidality. We found an increased risk for overall suicidality in women versus men (odds ratio [OR] 1·54 [95% CI 1·31-1·81]; p<0·0001) and in individuals residing in urban metropolitan cities versus those residing in rural areas (1·75 [1·30-2·35]; p=0·0002). Individuals belonging to the lowest income quintile (reference group with OR <1·00 and p<0·05 for other income quintiles), those with depressive disorders (28·78 [20·04-41·33]; p<0.0001) and those with alcohol use disorders (6·52 [3·83-11·10]; p<0.0001) had an increased risk for high suicidality, compared with their corresponding counterparts. INTERPRETATION: A national suicide prevention strategy that is comprehensive, using multisectoral approaches, is required to address the prevailing sociodemographic and other risk factors for reducing suicidality and suicide deaths in India. This study also has implications for other low-income and middle-income countries in south Asia, where sociodemographic factors play a crucial role for suicide prevention. FUNDING: Ministry of Health and Family Welfare, Government of India.
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Alcoholismo/epidemiología , Trastorno Depresivo/epidemiología , Intento de Suicidio/estadística & datos numéricos , Adulto , Anciano , Femenino , Encuestas Epidemiológicas , Humanos , India/epidemiología , Masculino , Persona de Mediana Edad , Prevalencia , Factores SocioeconómicosRESUMEN
Persistent regional glucocorticoid (GC) dysregulation in alcohol-withdrawn subjects emerges as a key factor responsible for protracted molecular and neural alterations associated with long-term cognitive dysfunction. Regional brain concentrations of corticosterone vary independently from plasma concentrations in alcohol-withdrawn subjects, which may account for the treatment of alcohol withdrawal-induced persistent pathology. Thus, from a pharmacological point of view, a main issue remains to determine the relative efficacy of compounds targeting the GC receptors to attenuate or suppress the long-lasting persistence of brain regional GC dysfunctions in abstinent alcoholics, as well as persistent changes of neural plasticity. Data from animal research show that acting directly on GC receptors during the withdrawal period, via selective antagonists, can significantly counteract the development and persistence of cognitive and neural plasticity disorders during protracted abstinence. A critical remaining issue is to better assess the relative long-term efficacy of GC antagonists and other compounds targeting the corticotropic axis activity such as gamma-aminobutyric acid A (GABAA) and GABAB agonists. Indeed, benzodiazepines (acting indirectly on GABAA receptors) and baclofen (agonist of the GABAB receptor) are the compounds most widely used to reduce alcohol dependence. Clinical and preclinical data suggest that baclofen exerts an effective and more powerful counteracting action on such persistent cognitive and endocrine dysfunctions as compared to diazepam, even though its potential negative effects on memory processes, particularly at high doses, should be better taken into account.
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Exposure to prolonged, unpredictable stress leads to glucocorticoids-mediated long-lasting neuroendocrine abnormalities associated with emotional and cognitive impairments. Excessive levels of serum glucocorticoids (cortisol in humans, corticosterone in rodents) contribute notably to deficits in working memory (WM), a task which heavily relies on functional interactions between the medial prefrontal cortex (PFC) and the dorsal hippocampus (dHPC). However, it is unknown whether stress-induced increases in plasma corticosterone mirror corticosterone levels in specific brain regions critical for WM. After a 6 week-UCMS exposure, C57BL/6â¯J male mice exhibited increased anxiety- and depressive-like behaviors when measured one week later and displayed WM impairments timely associated with increased plasma corticosterone response. In chronically stressed mice, basal phosphorylated/activated CREB (pCREB) was markedly increased in the PFC and the CA1 area of the dHPC and WM testing did not elicit any further increase in pCREB in the two regions. Using microdialysis samples from freely-moving mice, we found that WM testing co-occurred with a rapid and sustained increase in corticosterone response in the PFC while there was a late, non-significant rise of corticosterone in the dHPC. The results also show that non-stressed mice injected with corticosterone (2â¯mg/kg i.p.) before WM testing displayed behavioral and molecular alterations similar to those observed in stressed animals while a pre-WM testing metyrapone injection (35â¯mg/kg i.p.), a corticosterone synthesis inhibitor, prevented the effects of UCMS exposure. Overall, the abnormal regional increase of corticosterone concentrations mainly in the PFC emerges as a key factor of enduring WM dysfunctions in UCMS-treated animals.
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Data derived from the plethora of networked digital devices hold great potential for public benefit. Among these, mobile phone call detail records (CDRs) present novel opportunities for research and are being used in a variety of health geography studies. Research suggests that the public is amenable to the use of anonymized CDRs for research; however, further work is needed to show that such data can be used appropriately. This study works toward an ethically founded data governance framework with social acceptability. Using a multifaceted approach, this study draws upon data governance arrangements in published health research using CDRs, with a consideration of public views and the public's information expectations from mobile network operators, and data use scenarios of CDRs in health research. The findings were considered against a backdrop of legislative and regulatory requirements. CDRs can be used at various levels of data and geographic granularity and may be integrated with additional, publicly available or restricted datasets. As such, there may be a significant risk of identity disclosure, which must be mitigated with proportionate control measures. An indicative relative risk of the disclosure model is proposed to aid this process. Subsequently, a set of recommendations is presented, including the need for greater transparency, accountability, and incorporation of public views for social acceptability. This study addresses the need for greater clarity and consistency in data governance for CDRs in health research. While recognizing the need to protect commercial interests, we propose that these recommendations be used to contribute toward an ethically founded practical framework to promote the safe, socially acceptable use of CDR data for public benefit. This pattern needs to be repeated for the appropriate use of new and emerging data types from other networking devices and the wider internet of things.
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Teléfono Celular/tendencias , Recolección de Datos/ética , Teléfono Celular/ética , Confidencialidad/ética , Confidencialidad/normas , HumanosRESUMEN
AIMS: A study looking at the distribution, management and outcomes of patients referred to a secondary care endocrine clinic with a diagnosis of hyperthyroidism. METHODS: Retrospective longitudinal study of 442 patients referred over a 15-year period (2002-2017) with a diagnosis of hyperthyroidism to a secondary care endocrine clinic. Information on demographics, diagnosis, treatments and outcomes was recorded as patients attended for clinic visits. Patients were initially treated with 1-2 courses of thionamides and subsequently referred for radioiodine or surgery in cases of relapse. RESULTS: Patients (75% female, age range 17-91 years) were treated with thionamides for an average of 295 days. As expected, the majority of patients had Graves Disease (GD) (80%), followed by those with multinodular goitre (MNG) (8.6%), amiodarone-induced hyperthyroidism (6.7%) and toxic nodule (3.7%). Drug-induced remission rates were best seen in patients with GD (43%), and side effects necessitating change in treatment were relatively low (2.5%). In 121 patients who received radioiodine, hypothyroidism occurred in 50% of patients and was commoner in patients with GD (65%) than in those with MNG (22%) and toxic nodule (6.3%). CONCLUSIONS: This study is only one of a few reporting on the characteristics of patients with hyperthyroidism attending a typical secondary care endocrine clinic. Whilst we appreciate its limitations, we encourage similar methods of collecting valuable real world data to facilitate conduction of specialist peer review visits in other similar clinic settings.
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BACKGROUND: Mobile phone call detail records (CDRs) are increasingly being used in health research. The location element in CDRs is used in various health geographic studies, for example, to track population movement and infectious disease transmission. Vast volumes of CDRs are held by multinational organizations, which may make them available for research under various data governance regimes. However, there is an identified lack of public engagement on using CDRs for health research to contribute to an ethically founded framework. OBJECTIVE: This study aimed to explore public views on the use of call detail records in health research. METHODS: Views on using CDRs in health research were gained via a series of three public workshops (N=61) informed by a pilot workshop of 25 people. The workshops included an initial questionnaire to gauge participants' prior views, discussion on health research using CDRs, and a final questionnaire to record workshop outcome views. The resulting data were analyzed for frequencies and emerging themes. RESULTS: At the outset, most participants (66%, 40/61) knew that location data were collected by operators, but only 3% (2/61) knew they were being used for health research. Initially, the majority of the participants (62%, 38/61) was content for their anonymous CDRs to be used, and this increased (80%, 49/61) after the discussion explained that safeguards were in place. Participants highlighted that terms and conditions should be clearer, as should information to phone users on data collection, privacy safeguards, sharing, and uses in research. CONCLUSIONS: This is the first known study exploring public views of using mobile phone CDRs in health research. It revealed a lack of knowledge among the public on uses of CDRs and indicated that people are generally amenable to the use of anonymized data for research, but they want to be properly informed and safeguarded. We recommend that public views be incorporated into an ethically founded framework for the use of CDRs in health research to promote awareness and social acceptability in data use.
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Teléfono Celular/instrumentación , Privacidad/psicología , Opinión Pública , Registros/normas , Adolescente , Adulto , Anciano , Teléfono Celular/tendencias , Educación/métodos , Femenino , Humanos , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Registros/estadística & datos numéricos , Encuestas y CuestionariosRESUMEN
BACKGROUND: Call detail records (CDRs) are collected by mobile network operators in the course of providing their service. CDRs are increasingly being used in research along with other forms of big data and represent an emerging data type with potential for public good. Many jurisdictions have infrastructures for health data research that could benefit from the integration of CDRs with health data. OBJECTIVE: The objective of this study was to review how CDRs have been used in health research and to identify challenges and potential opportunities for their wider use in conjunction with health data. METHODS: A literature review was conducted using structured search terms making use of major search engines. Initially, 4066 items were identified. Following screening, 46 full text articles were included in the qualitative synthesis. Information extracted included research topic area, population of study, datasets used, information governance and ethical considerations, study findings, and data limitations. RESULTS: The majority of published studies were focused on low-income and middle-income countries. Making use of the location element in CDRs, studies often modeled the transmission of infectious diseases or estimated population movement following natural disasters with a view to implementing interventions. CDRs were used in anonymized or aggregated form, and the process of gaining regulatory approvals varied with data provider and by jurisdiction. None included public views on the use of CDRs in health research. CONCLUSIONS: Despite various challenges and limitations, anonymized mobile phone CDRs have been used successfully in health research. The use of aggregated data is a safeguard but also a further limitation. Greater opportunities could be gained if validated anonymized CDRs were integrated with routine health records at an individual level, provided that permissions and safeguards could be put in place. Further work is needed, including gaining public views, to develop an ethically founded framework for the use of CDRs in health research.
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The value of using population data to answer important questions for individual and societal benefit has never been greater. Governments and research funders world-wide are recognizing this potential and making major investments in data-intensive initiatives. However, there are challenges to overcome so that safe, socially-acceptable data sharing can be achieved. This paper outlines the field of population data science, the International Population Data Linkage Network (IPDLN), and their roles in advancing data-intensive research. We provide an overview of core concepts and major challenges for data-intensive research, with a particular focus on ethical, legal, and societal implications (ELSI). Using international case studies, we show how challenges can be addressed and lessons learned in advancing the safe, socially-acceptable use of population data for public benefit. Based on the case studies, we discuss the common ELSI principles in operation, we illustrate examples of a data scrutiny panel and a consumer panel, and we propose a set of ELSI-based recommendations to inform new and developing data-intensive initiatives.We conclude that although there are many ELSI issues to be overcome, there has never been a better time or more potential to leverage the benefits of population data for public benefit. A variety of initiatives, with different operating models, have pioneered the way in addressing many challenges. However, the work is not static, as the ELSI environment is constantly evolving, thus requiring continual mutual learning and improvement via the IPDLN and beyond.
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Ciencia de los Datos , Salud Pública , Humanos , Almacenamiento y Recuperación de la Información/ética , Almacenamiento y Recuperación de la Información/legislación & jurisprudencia , Internacionalidad , Medición de RiesgoRESUMEN
The value of using population data to answer important questions for individual and societal benefit has never been greater. Governments and research funders world-wide are recognizing this potential and making major investments in data-intensive initiatives. However, there are challenges to overcome so that safe, socially-acceptable data sharing can be achieved. This paper outlines the field of population data science, the International Population Data Linkage Network (IPDLN), and their roles in advancing data-intensive research. We provide an overview of core concepts and major challenges for data-intensive research, with a particular focus on ethical, legal, and societal implications (ELSI). Using international case studies, we show how challenges can be addressed and lessons learned in advancing the safe, socially-acceptable use of population data for public benefit. Based on the case studies, we discuss the common ELSI principles in operation, we illustrate examples of a data scrutiny panel and a consumer panel, and we propose a set of ELSI-based recommendations to inform new and developing data-intensive initiatives.We conclude that although there are many ELSI issues to be overcome, there has never been a better time or more potential to leverage the benefits of population data for public benefit. A variety of initiatives, with different operating models, have pioneered the way in addressing many challenges. However, the work is not static, as the ELSI environment is constantly evolving, thus requiring continual mutual learning and improvement via the IPDLN and beyond.
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Difusión de la Información , Almacenamiento y Recuperación de la Información , Inversiones en Salud , Aprendizaje , Informática MédicaRESUMEN
The value of using population data to answer important questions for individual and societal benefit has never been greater. Governments and research funders world-wide are recognizing this potential and making major investments in data-intensive initiatives. However, there are challenges to overcome so that safe, socially-acceptable data sharing can be achieved. This paper outlines the field of population data science, the International Population Data Linkage Network (IPDLN), and their roles in advancing data-intensive research. We provide an overview of core concepts and major challenges for data-intensive research, with a particular focus on ethical, legal, and societal implications (ELSI). Using international case studies, we show how challenges can be addressed and lessons learned in advancing the safe, socially-acceptable use of population data for public benefit. Based on the case studies, we discuss the common ELSI principles in operation, we illustrate examples of a data scrutiny panel and a consumer panel, and we propose a set of ELSI-based recommendations to inform new and developing data-intensive initiatives.We conclude that although there are many ELSI issues to be overcome, there has never been a better time or more potential to leverage the benefits of population data for public benefit. A variety of initiatives, with different operating models, have pioneered the way in addressing many challenges. However, the work is not static, as the ELSI environment is constantly evolving, thus requiring continual mutual learning and improvement via the IPDLN and beyond.