bluuebunny/crossref_metadata_2025 huggingface dataset:
Building a high quality data linkage spine using a targeted approach to clerical review
Authors: Wiggins Nadine , Stokes Brian
Published: April 2017

ABSTRACTObjectivesThe Tasmanian Data Linkage Unit (TDLU) was established through the University of Tasmania in 2011 with the first dataset imported to its Master Linkage Map (MLM) during 2014. Tasmania an island state of Australia, has a population of approximately 516,000. From the TDLU’s earliest inception, it was deemed important to build a high quality linkage spine comprising key administrative data representative of significant state health and related datasets to support quality population level research.ApproachThe TDLU has embraced a model of continual quality and process enhancement as a determined strategy to support ongoing business improvement. Initial linkage approaches utilised ‘traditional’ methods of reviewing record pairs within an upper and lower confidence range. This approach resulted in false record pairs with high confidence levels being linked (false positives) and true record pairs at lower confidence levels not linked (false negatives). To improve linkage quality, the TDLU has continually refined and modified its clerical review methodology with a specialist software module developed to identify specific record attributes within groups that require the group to be manually reviewed and resolved. A range of SQL queries have also been developed to identify incorrect links and further enhance the linkage quality of the MLM.ResultsThe linkage quality tools implemented have led to improved clerical review and quality assurance processes which in turn have increased the overall quality of the linkage spine. The ‘targeted’ method of clerical review provides easy identification of false positive records, particularly those with high confidence scores such as twins and husband/wife combinations. The review of groups at lower confidence levels has minimised the rate of false negative pairs however further refinement of tools is required to minimise the time spent on reviewing these groups. The clerical review software module has equipped staff with the necessary information to make informed and timely decisions when reviewing groups of records. Detailed documentation is maintained for each linkage project providing continual feedback for system and process improvements as the linkage spine increases in size.ConclusionThe process of clerical review and quality assurance requires a commitment to continual refinement of tools and techniques resulting in a higher quality linkage spine and a reduction in the total time and resource required to link datasets.
Multi-agency data linkage- How to and lessons learnt through the Western Australian Developmental Pathways Program
Authors: Glauert Rebecca
Published: April 2017

ABSTRACTObjectivesThis presentation will showcase the Western Australia Developmental Pathways Program, the largest cross- agency data linkage program in Australia.ApproachThe Developmental Pathways Program links data from 9 State government agencies to create a world class data resource. This program has paved the way for cross- agency data linkage in Australia. The linked data allow government and researchers to investigate trends, risk and protective factors and outcomes, across a number of areas, including child maltreatment, juvenile offending, physical health, mental health, education, housing and disability. The Program also links researchers with government, allowing the research to be translated into policy and practice.ResultsThrough engagement, communication and good governance, this program has expanded the West Australian Data Linkage System by including a large number of non-health datasets to be linked for Epidemiological research. In this presentation we will demonstrate not only our research capability, but also the type of governance and relationships that are needed in order to create a successful cross agency data linkage capability, and some of the lessons learnt along the way. We will also be presenting some of the new initiatives which are helping it to progress forward into a more useful and meaningful resource.ConclusionThis Program is the largest data linkage program in Australia, and is continually expanding with new agencies coming on board every year. Here we will provide a useful overview of the Program, along with key lessons learnt.
Case definitions for common mental health disorders among adolescents using electronic primary care data: a comparison with self-reported data from ALSPAC
Authors: Cornish Rosie , John Ann , Boyd Andy , Tilling Kate , Macleod John
Published: April 2017

ABSTRACT

ObjectivesRates of common mental disorders may be increasing among children and adolescents, though evidence of this is mixed. Symptom questionnaires in population surveys may overestimate clinical disease. Conversely, lower participation of individuals with mental disorders may lead to underestimates in surveys. Clinical databases may have greater population coverage and contain information of more obvious clinical validity; however, several factors, including the help-seeking behaviour of individuals and the recording practices of clinicians, may influence burden-of-disease estimates based on these databases. The aim of the current investigation was to compare case definitions of common mental disorders (CMD) using linked electronic primary care data to definitions derived from self-reported data obtained in an observational study.

ApproachWe studied 1,562 adolescents who had completed the Revised Clinical Interview Schedule (CIS-R) in the Avon Longitudinal Study of Parents and Children (ALSPAC) at age 17-18 years and had linkage established to their electronic primary care records for at least 6 months after the time they completed the CIS-R. We used lists of Read codes corresponding to diagnoses, symptoms and treatment to create twelve definitions of CMD and also of depression alone. We calculated sensitivities and specificities of these, using CIS-R case definitions as the reference standard. All analyses were carried in Stata 13.0.

ResultsSensitivities ranged from 5.2% to 24.3% for depression and from 3.8% to 19.2% for CMD. The specificities of all definitions were above 98% for depression and above 96% for CMD. For both depression and CMD, the definition that included current diagnosis, treatment or symptoms identified the highest proportion of cases.

ConclusionsMost individuals meeting case definitions for CMD based on information in clinical records also met CMD case definitions based on symptoms reported in a contemporaneous survey. Conversely, many individuals identified as CMD cases based on reported symptoms had no evidence of CMD in their clinical records. A small number of individuals with CMD recorded in their clinical records had not reported symptoms of this in the survey. Overall, these data suggest that clinical databases are likely to yield underestimates of the burden of CMD in the population. Clinical records appear to yield highly valid diagnoses of common mental disorders which may be useful for studying risk factors and outcomes of these conditions. The greatest epidemiological value is likely to be obtained when the combination of information from both survey and clinical records is possible.
An Investigation of Variation in Emergency Admission Rates between New Zealand General Practices: a national database linkage study
Authors: Lloyd Hywel , Tomlin Andrew , Dovey Susan
Published: April 2017

ABSTRACT

ObjectiveTo quantify variation in emergency admission rates between all New Zealand general practices and to investigate the influence of patients with long-term conditions.

ApproachThis retrospective cohort study linked three national data collection. The Primary Health Organisation (PHO) Enrolment Collection provided practice register data on age sex ethnicity and deprivation. The National Minimum Dataset for Hospital Events (NMDS) allowed access to discharge data. The national Pharmaceutical Collection enabled medicine use to provide a proxy measures of patient morbidity.

Expected emergency admission rates for each practice in 2014 were calculated using indirect standardisation with the total registered patient population of all study practices as the reference population. A standardised emergency admission ratio (SAR) of the actual admission rate to the expected admission rate was calculated for each practice.

ResultOver the fourteen year period 2001-2014 total emergency admissions from all causes in New Zealand increased by 42%. Arranged and waiting list admissions increased by 29% over the same period. Emergency admissions represented 54% of all admissions by 2014 and increased by 56%.

Patients with hospital diagnoses for long-term conditions accounted for 56.5% of all emergency admissions and 78.6% of all associated bed days. More females had unplanned admissions than males (p<0.001, 95% CI 0.48%-0.59%) and more Maori (p<0.001, 95% CI 1.33%-1.49%) and Pacific Island patients (p<0.001, 95% CI 0.96%-1.17%) were admitted than Europeans. Increasing deprivation status was significantly associated with an increased likelihood of admission (p<0.001; chi-squared test for trend).

Practices with the highest SARs in 2014 tended to have the highest admission rates in that year and in previous years. They also had high admission rates for both high and low risk patient groups.

ConclusionThis study indicates that there is considerable variation in the emergency admission rates of New Zealand general practices and in their standardised emergency admission rates after adjusting for differences in patient demography. A more meaningful measure of true disease morbidity is required to understand more the role ‘models of care’ play in the degree of variation of emergency admission.

Keywords: Emergency Admission, practice variation, primary care, New Zealand
Disclosure and Data Linkage
Authors: Turner Andrew , Murtagh Madeleine , Burton Paul
Published: April 2017

ABSTRACT

ObjectivesSharing of health data, including linkage of research with administrative and health records, is crucial in order to reduce waste and inefficiency as well as to maximise the scientific potential of data. However, there is a well-recognised need to protect the privacy and confidentiality of participant’s and their data. Consequently calls for increasing the openness of health data have been accompanied by new norms and techniques to evaluate and control disclosure risk. We review some of the central concepts deployed in debates about disclosure control—privacy, anonymity, identification—and highlight ethical and social scientific issues around their history, their significance, and the complex and changing contexts in which they are deployed.

ApproachReview of the literature about the history and state-of-the-art of disclosure control. We focus on the framing of key problems and solutions, as well as arguments about how concepts are defined and why they are valuable.

ResultsWe identify central concepts deployed in the literature about disclosure control. Concepts include: the construction of risk in terms of the internal statistical properties of data, and in terms of the external context, or ‘data environments’ (Elliot et al, 2010), which data inhabit and move through; notions of balance regarding security and release of microdata and its juxtaposition with data protection and/or risks of confidentiality violations; protection versus information loss; and the construction of methods for constraining disclosure.

ConclusionDespite the clear relevance of the concepts and context of disclosure control to ethicists, Science & Technology Studies and other scholars, there has been little engagement with the field of Statistical Disclosure Control. We outline a series of key issues for the social study of disclosure control.
Does access to health services influence the diagnostic pathway and outcome from cancer: analysis of a linked dataset.
Authors: Turner Melanie , Fielding Shona , Murchie Peter
Published: April 2017

ABSTRACT

ObjectivesTo determine whether cancer diagnostic pathways and survival are affected by access to GP practice, diagnostic centre and cancer treatment centre.

Cancer treatment in the UK is generally delivered in large cancer centres within major cities. This could have a detrimental effect on outcomes for people from rural areas who develop cancer. Historical UK studies suggest distance from services affects cancer outcomes. In recent years several developments, such as cancer networks and suspected cancer referral pathways, have occurred within the UK NHS, which may have reduced earlier inequalities. It is currently unknown whether a persons’ geographical location within the UK has implications for the timeliness of their receipt of a diagnosis and treatment for cancer.

ApproachRoutine clinical data from Scottish Morbidity Record (SMR) 01, Scottish Cancer Registry SMR 06, and Geographical Information Systems (GIS) derived measures of road distances and travelling times from key healthcare facilities have been linked to a clinical tracking database, NHS Grampian Cancer Care Pathway to form the Northeast and Aberdeen Scotland Cancer and Residence (NASCAR) database. This linkage provided a retrospective cohort of 13 702 people diagnosed with cancer since 2007.

Logistic regression analyses have been conducted to determine the effect of distance from services on provider delays and survival at one year following diagnosis.

ResultsOf the 13 702 patients included in the analysis the mean age was 67.4 ± 13 years and 45% were male. The highest proportion of patients lived within one mile of their GP practice (35.5%), less than five miles from their diagnostic centre (39.6%) and less than five miles from their cancer treatment centre (39.6%).

Distance to GP practice or distance to diagnostic centre was not a significant predictor of timely treatment (treatment within 62 days of GP referral) or survival at one year following diagnosis.

Increased distance to cancer treatment centre predicted shorter timely treatment intervals (5-9 miles [OR 1.50; CI 1.18-1.90], 10-29 miles [OR 1.09; CI0.90-1.31], 30-59 miles [OR 1.26; CI 1.05-1.52], > 60 miles [OR 1.72; CI 1.41-2.09]. Increased distance to treatment centre > 60 miles was associated with quicker times between diagnosis and receipt of treatment [OR 1.26; CI 1.12-1.42).

ConclusionsIncreased distance to cancer treatment centre is associated with shorter treatment intervals. There was no association between likelihood of metastatic disease at diagnosis or survival at one year. Analysis is on-going into travelling times to services and may provide further insight.
Assessing the accuracy of probabilistic record linkage of social and health databases in the 100 million Brazilian cohort
Authors: Barreto Marcos , Alves André , Sena Samila , Fiaccone Rosemeire , Amorim Leila , Ichihara Maria Yuri , Barreto Mauricio
Published: April 2017

ABSTRACT

Background and aimsThe Brazilian government has several social protection programmes that select their beneficiaries based on socioeconomic information kept in the CadastroÚnico (CADU) database. The CADU will be used to build a population-based cohort of approximately 100 million individuals. Among the social programmes is the Bolsa Família (PBF), a conditional cash transfer programme that provides extra income to poor families. These two databases must be deterministically linked to individuals who have received payments from PBF between 2004 and 2012. It will be used in epidemiological studies aiming to assess the impact of PBF on the occurrence and severity of several diseases and health problems (tuberculosis, leprosy, HIV, child health etc). This cohort must be probabilistically linked with databases from the Unified Health System (SUS), such as hospitalization, notifiable diseases, mortality, and live births, in order to produce data marts (domain-specific data) to the proposed studies. Our goals comprise the validation of probabilistic record linkage methods to support this cohort setup.

ApproachThis paper emphasizes the accuracy assessment of our methods based on the linkage of SIH (hospitalization), SINAN (notifications), and SIM (mortality) records to the 2011 extraction of CADU. We focused on hospitalization and notification of tuberculosis, as well infant mortality for all causes in under-4 children, for a small sample with 30,029 records (CADU). Due to the absence of gold standards, we used two approaches to assess accuracy: a clerical review and an automatic (tool-based) search. In the first case, we used different cut-off points as similarity index to calculate sensitivity and specificity, and a ROC curve to separate matched and non-matched pairs. The second approach retrieves from CADU all matched and non-matched pairs for a given individual, serving as a gold standard for validation.

ResultsWe retrieved 22 linked pairs, from which 18 are true positives for infant mortality (SIM database). From SINAN, our results were 434 linked pairs with 166 true positives, and with SIH, 121 linked pairs with 34 true positives. The sensitivity of manual scan for SIM (children mortality) ranges from 44% (specificity of 100%) to 95% (specificity of 94%), with similarity indices between 0.80 and 0.97, respectively. For automatic search, we obtained a sensitivity of 69.2% and specificity of 91.8%.

ConclusionOur results show the need for a continuous improvement in our linkage routines and how to consistently evaluate their accuracy in the absence of adequate gold standards.
Answering questions posed by health system stakeholders using linked administrative health data at the Institute for Clinical Evaluative Sciences (ICES)
Authors: Yates Erika A. , Vermeulen Marian J. , Saskin Refik , Victor Charles J. , Paprica Alison P. , Schull Michael J.
Published: April 2017

ABSTRACTObjectivesThere is a growing need to broaden access to administrative health data in order to support decision making and planning by health system stakeholders. An initiative funded by the Ontario Ministry of Health and Long-Term Care, the Applied Health Research Question (AHRQ) portfolio leverages the linked administrative health data holdings and the scientific and clinical expertise at ICES to answer questions generated by stakeholders that will have a direct impact on health care policy, planning or practice.

ApproachEligible requesters include government ministries, health care providers and planners. Requests detail the purpose of the research question, the related scientific literature, and the planned use and intended impact of the research findings. An internal review team meets monthly to adjudicate; requests demonstrably needing research findings rapidly are adjudicated on an ad hoc basis. Eligible requests are those that aim to inform evidence-based decision making, do not advocate for a particular answer and are feasible in terms of data availability. All projects are reviewed by the internal privacy office to ensure that use of the administrative health data is in accordance with both data sharing agreements and legislation governing use of personal health information. At no cost to the requesting organization, ICES scientists and research staff formulate the analysis plan, conduct the analysis and prepare the research product (data tables, a slide deck and/or a written report); and, may opt to publish noteworthy findings. All research products must be cleared for risk of re-identification prior to being shared externally.

ResultsRequests have steadily increased from 43 submissions in fiscal year 2012/13, to 59 in 2014/15 and 74 to date in 2015/16. In fiscal year 2014/15, provincial government and government agencies were the most frequent requesters (39%), followed by hospitals and other health care providers (19%), disease advocacy groups (12%) and professional associations (10%). Requests include assessment of health care utilization; health system performance and evaluation; and chronic disease prevalence and treatment. Time to complete reports varies from 5 days to 24 months, depending on project complexity and requirements. Requesters report that AHRQ research findings have influenced decision-making, policy development and health care practice; and have inspired future research.

ConclusionThis initiative demonstrates the value and feasibility of using the linked administrative health data to answer questions to meet the unique needs of health planners and policymakers, and presents an opportunity for collaboration beyond the academic research community.
Creating a Single Application and Approval Process to Enable Research; an example using CPRD Primary Care Data and Public Health England Cancer Registry Data
Authors: Amjad Sophia , Williams Rachael , Brannan Rachael , Malik Tariq , Valentine Janet
Published: April 2017

ABSTRACTObjectivesTo enhance the research value and capability of its primary care database, the Clinical Practice Research Datalink (CPRD) has collaborated with Public Health England (PHE)’s National Cancer Registration and Analysis Service to facilitate access to linked cancer registration data for use in research, pharmacovigilance, drug monitoring and health outcomes analysis. Since 2009, access to this linked resource has been co-managed by CPRD and PHE, through two parallel, independent approvals processes: (a) the MHRA Independent Scientific Advisory Committee (ISAC) and (b) the PHE Office for Data Release (ODR). In upholding the Office for Life Science Ministerial Industry Strategy Group (Health Data Programme)’s vision to minimise process barriers to accessing real world data, CPRD and PHE have worked together to unify and streamline these two processes into a single end-to-end application and approval process.

ApproachEach organisation reviewed each other’s approval processes to achieve an improved mutual understanding of the respective organisation’s governance approach, the risk based assessments applied to disclosure risk, risk appetites and policies, with the goal to harmonise these into a single approval process.

ResultsCPRD and PHE are finalising a contract establishing a clear operating framework allowing CPRD to grant approval to researchers for the use of linked cancer registry data. The contract names CPRD as a joint data controller and sets out the purposes for processing, the manner of processing and the means by which joint data controller responsibilities will be satisfied. An associated service level agreement is in discussion which will enable robust timelines and performance management for both organisations. These developments are important milestones towards achieving the single approval process by allowing CPRD to review applications for cancer registry data in-house, simultaneously to the ISAC review.

ConclusionThe strong relationship built between CPRD and PHE, and willingness to develop a single application and approval process, will strengthen and streamline access to these data, whilst assuring patients and the public that scientific integrity is maintained and proportionate information governance checks are in place. Upon completion of this work, applicants will experience associated faster review and feedback time, ultimately leading to faster approvals. Researchers wishing to utilise these linked data will soon be able to submit one application to ISAC, have one point of contact and one approval.
Transient Ischaemic Attack 999 Emergency Referral (TIER): a cluster randomised feasibility trial facilitated by data linkage
Authors: Seagrove Anne , Bulger Jenna , Snooks Helen , Rees Nigel , Heaven Martin
Published: April 2017

ABSTRACT

Background Studies demonstrate TIA patients are at risk of further TIAs, stroke and death. TIA incidence is unknown, however estimated at 35 per 100,000 people annually in the UK, costing approximately £7 billion. Many TIA patients call 999, are assessed, stabilised and conveyed to Emergency Department (ED). Rapid assessment of TIA severity and risk and intervention is emerging as the new standard for TIA care leading to alternative pathways with direct referral to specialist services. However, uncertainties exist over this new model of care.

We will develop and assess feasibility of paramedic assessment and referral of low-risk TIA patients directly to TIA clinic for early review, thus providing timely specialist review without: adverse consequences; inconvenience of ED attendance; unnecessary cost to the NHS.

MethodsThis feasibility trial is designed to test the methods of a pragmatic cluster randomised trial, utilising data linkage for capturing outcome data, but with a qualitative component. To develop the treatment protocol, training and referral processes, working with clinicians/stakeholders, we will conduct:

survey across UK ambulance services to find referral pathways for low-risk TIA patients

systematic review of TIA prehospital care

paramedic focus groups pre-implementation

Then:

randomise paramedics (intervention/control)

recruit patients

interview patients, key clinicians and service managers

collect routine data via data linkage using the SAIL databank

hold paramedic focus groups post-implementation

We will:

measure uptake and compliance with treatment protocols

validate TIA assessment tool

analyse qualitative data

pilot recruitment processes

test data collection methods

estimate key outcomes effect size to inform full trial sample size calculation

ResultsWill inform full trial development using criteria: intervention acceptability to practitioners and patients; trial design feasibility; outcome data completeness.

Conclusions

If indicated, full trial conducted

If not, but positive results - advise intervention development for immediate implementation

If not, but negative results – advise delivery of intervention should cease.
Monitoring medication uptake in difficult asthma – qualitative analysis
Authors: Anderson Debbie , Boyter Anne , MacBride-Stewart Sean , Cowan Douglas , Bucknall Christine
Published: April 2017

ABSTRACTObjectiveTo determine the acceptability of using data on medicines dispensed in primary care to inform out-patient treatment of patients with difficult-to-treat asthma.

ApproachConsultant respiratory physicians’ access to a summary of all relevant medicines dispensed by community pharmacists to patients with difficult to treat asthma was piloted in 2015 (therapy review (TR)). Dispensed medicine data were collected using the patient’s unique NHS identifier. This information was aggregated monthly for the year before the patient attended their clinic appointment. Patients gave consent and the summary data were used to assess concordance with therapy and inform a discussion about future management.

Semi-structured interviews were conducted with eight patients who had received TR and eight respiratory physicians: two with access to the summary. The interviews aimed to highlight

the experiences of patients and physicians on the utility of therapy reviews

the views of physicians without access to summaries on the prospective use of therapy reviews.

With the participant’s consent, interviews were recorded and transcribed. Thematic analysis of grouped responses was conducted using NVivo software.

ResultsAll physicians agreed that poor compliance remains a significant concern when treating patients with difficult asthma and supported the use of TR. Physicians with experience of TR identified reliability over current methods of assessing compliance; ability to inform future treatment; and assistance in the discussion of concordance as advantages. The lag of three months in available dispensed data was a disadvantage. Physicians without experience of TR raised concern that use may lead to confrontation: reflected in the experience of one patient who expressed that TR discouraged them from improving compliance. Additional interventions are needed to improve compliance. Opinions from other patients were positive and supported the inclusion of TR as part of a consultation.

Physicians with experience of TR found the summary accessible, if access to computers containing specific software to view TR was available. This limitation was considered potentially problematic and physicians without access to TR expressed a preference to accessing TR via NHS Portal - a secure online platform permitting registered users access to patient-level information.

ConclusionThis demonstrates the positive impact of using data about primary care dispensed medicine in secondary care to assess medicine concordance and inform individual patient’s ongoing treatment. This supplements other data collected from clinical tests and patient-physician discussion. Development of a more efficient system to access the summary data is required before it is more widely used.
High school graduation – the impact of older siblings’ educational achievement
Authors: Wall-Wieler Elizabeth , Roos Leslie
Published: April 2017

ABSTRACT

ObjectiveFailing to graduate high school is linked to many risk factors, including family history academic achievement. This research examines how important an older sibling’s academic achievement is in predicting whether a younger sibling will graduate high school.

MethodThis study used linkable administrative databases housed at the Manitoba Centre for Health Policy (MCHP). The cohort consists of 33,843 individuals born in Manitoba between April 1, 1983 and March 31, 1994, who stayed in the province until at least their 20th birthday, had at least one older sibling, and had no missing values on key variables. Logistic regression, controlling for a variety of confounders, is used to determine how much having an older sibling who didn’t graduate high school impacts the odds of a younger sibling not graduating high school.

ResultsThe adjusted odds of not graduating high school within 6 years of entering grade nine for individuals who had at least one older sibling who did not graduate high school was 4.81 (p < 0.0001, 95% CI 4.4-5.2) times higher than for individuals whose older sibling(s) graduated high school. Individuals living in low income neighborhoods at birth or age 18, individuals living in rural northern Manitoba at birth or age 18, and individuals who moved before age 18 were significantly less likely to finish high school. High school graduation rates for those living in the lowest income quintile at age 18 whose older siblings graduated high school were higher than those living in the highest income quintile at age 18 and had at least one older sibling who did not graduate high school.

ConclusionThe influence of an older sibling’s educational achievement has significant implications for younger siblings’ odds of high school graduation. This is likely due to social learning (younger sibling modeling actions of older sibling), and the shared parental influence and social risk experienced by both siblings.
From a culture of caution to a culture of confidence: facilitating the good governance of administrative data in the UK
Authors: Stevens Leslie , Laurie Graeme
Published: April 2017

ABSTRACT

ObjectivesThis talk unpacks the culture of caution surrounding the use and sharing of administrative data in the UK and suggests the adoption of the authors’ novel decision-making tool and organisational strategy based on the public interest, to achieve good governance. Administrative data, which implicate all public sector data, are in constant demand –to be shared for ‘joined-up’ services, used as evidence in Government inquiries and for research purposes. These demands are often made on the basis that they serve ‘the public interest’ but public authorities are without the decision-making tools to make proportionate decisions outwith narrow and risk-averse interpretations of legal requirements. Public authorities are operating within a ‘culture of caution’, fuelled by misperceptions of what the law does or does not require for data to be used/shared ‘in the public interest’; uncertainties regarding incentives for data sharing; perceived controversies if something ‘goes wrong’; and imbalanced assessment of risks without robust assessment of potential public interests to be served or the potential ‘harm’ from not sharing data.

ApproachThis discussion is substantiated by reference to major contributions to this field (e.g. Law Commission Report on data sharing in 2014; Thomas and Walport’s data sharing review in 2008 etc.) and to the authors’ engagement with the administrative data community as part of the legal work package to the Administrative Data Research Centre Scotland.

ResultsThe research reveals that public authorities exhibit extreme hesitance to undertake data sharing initiatives for reasons including:

misperceptions of the law (due to legal complexity, lack of legal precedent and authoritative guidance on data sharing)

lack of resources and expertise to manage increasing demands to use/share data 

individuals fear reprisal if something ‘goes wrong’ with data handling 

senior-management fear public backlash for new uses of data and organisational reputational damage 

no understanding of the incentives to share data if there is no ‘direct’ benefit to the public authority in question.

ConclusionWe conclude by focussing on how to overcome the culture of caution, to one of confidence. We suggest the adoption of our decision-making matrix to help data custodians distinguish between real versus perceived barriers to data sharing (i.e. dispelling legal myths and identifying areas where changes can be made). We also introduce strategic solutions in our public interest mandate which entails overt commitment to use public sector data when it is in the public interest to do so.
Using record linkage to assess the impact of late presentation for care and treatment on short-term mortality among HIV-infected adults in rural South Africa.
Authors: Kabudula Chodziwadziwa Whiteson , Reniers Georges , Gómez-Olivé Francesc Xavier , Kahn Kathleen , Tollman Stephen
Published: April 2017

ABSTRACT

ObjectivesTo assess the impact of late presentation (CD4 cell count <200 cells/μl at presentation) for care and treatment on short-term mortality (death within a year of presentation) among HIV-infected adults in rural South Africa.

ApproachWe applied deterministic and probabilistic record linkage approaches to link adult patients seeking care and treatment for HIV from a health facility between 2007 and 2013 to population under continuous surveillance by the Agincourt Health and Demographic Surveillance System (HDSS) in rural northeast South Africa. The resulting record-linked dataset was thereafter analysed to estimate short-term mortality (death within a year of presentation) differences in late presenters (initial presentation at health facility with CD4 cell count less than 200 cells/μl) and early presenters (presentation with CD4 cell count of 200 or more cells/μl). In the linked dataset, CD4 cell count was extracted from the health facility database where as date of death came from the HDSS database.

ResultsA total of 3,553 patients who sought care and treatment for HIV at Bhubhezi clinic between 2007 and 2013 were linked to the Agincourt HDSS surveillance population. Proportion of patients classified as late presenters was 60.9%. Short-term mortality was 8.9% (317/3,553): 11.1% among those who presented late and 5.5 % among those who presented early (P<0.001).

ConclusionRecord linkage facilitated the assessment of the impact of late presentation for care and treatment on short-term mortality among HIV-infected adults in rural South Africa. In the population studied, late presentation is high and is contributing to high mortality among people living with HIV. Strategies that would facilitate early presentation are needed in order to reduce mortality among people living with HIV.
¿Qué es la semiótica médica?
Authors: Tredinn ick-Rowe John
Published: April 2017

Este documento intenta proporcionar una mirada hacia una pregunta básica, ¿qué es semiótica médica? Semiótica como una materia se ha aplicado a muchas áreas de trabajo que van desde arte, biología, educación, música y zoología para nombrar solo algunas. Sin embargo el lado médico de la semiótica, a pesar de tener una conexión intrincada a los orígenes de la semiótica en sí misma no ha atraído tanta atención como otras disciplinas dentro de la ciencia de los signos. Este artículo comienza dando una descripción de las fundaciones históricas de la semiótica médica, de su uso en los siglos dieciocho y diecinueve en patología europea, del diagnóstico y de Nosología, que es seguido por ejemplos de la literatura contemporánea en el tema, y concluye con las hipótesis en donde la disciplina puede todavía ir. Es la afirmación del autor que la semiótica médica tiene una larga e importante historia, que es a menudo pasada por alto en la medicina como también en semiótica. Y si la disciplina va a continuar existiendo, tendrá que incorporar la teoría y la práctica en sus descripciones de la patología y el diagnóstico.
La momia Chachapoya en el arte después de Paul Gauguin y Edvard Munch
Authors: Ziemendorff Stefan
Published: April 2017

El autor del presente trabajo recopiló en dos anteriores artículos la influencia de una momia Chachapoyas en las obras de arte de Paul Gauguin y Edvard Munch. Siendo estos dos pintores muy influyentes en el arte moderno, no es de sorprender que otros artistas se dejaron inspirar, no solo estilísticamente por ellos, sino también por el uso de la momia. Por ello, varios historiadores de arte han podido identificar artistas y obras inspiradas por la momia, entre ellos escritores y artistas tan conocidos como Mario Vargas Llosa, Pablo Picasso y Henri Matisse. Estas referencias están hasta la fecha muy dispersas y no conectadas entre sí. Por ello aquí se recopila, por primera vez, un listado amplio de obras inspiradas directa o indirectamente por la momia Chachapoyas y para cada caso se revisa la consistencia iconográfica, cronológica y de influencia artística de los dos pintores mencionados y el novelista para poder certificar si las atribuciones de ser inspirados por la momia son comprobables o por lo menos probables. Adicionalmente, se identifica por primera vez algunas obras inspiradas por la momia.
Isotopías y enunciadores en miscelánea íntima de Carlos Germán Belli
Authors: Campos Pérez Rosalvina , Espinoza Herrera Edward
Published: April 2017

Esta investigación titulada “Isotopías y enunciadores en Miscelánea íntima de Carlos Germán Belli” tiene como propósito establecer la existencia de un discurso metapoético en la poesía del autor estudiado. Desde esta perspectiva los objetivos específicos de la investigación consisten en señalar las isotopías y enunciadores en la poesía de Belli, especialmente en la última parte del poemario mencionado. Además, queda claramente establecido que a partir de la relación de las categorías mencionadas se puede notar la presencia de estructuras metapoéticas propias de la experiencia del autor.
TRANSFORMASI GERAKAN SOSIAL KE PARTAI POLITIK KIPRAH POLITIK PARTAI RAKYAT DEMOKRATIK DI MASA REFORMASI
Authors: Argenti Gili
Published: April 2017

In the New Order era (Orde Baru), the end of the 1970s until the early 1990s, the student movement is faced with repressive measures, a policy of limiting the political activities of students applied, then the search for a new format motion is a must. The study group is an option to avoid the political power. In the expansion, the study group turns into a political party, the People’s Democratic Party (PRD). The emergence of the PRD as an opposition party to the New Order Indonesian political public attention, because of their political program is so radical. Also, the communist stigma attached by the government to the party’s young people reap the reaction of pro and cons in the community. After the collapse of the New Order, PRD became an electoral party but failed to reap the support of voters. This paper describes the process of changing the format of the student movement of the 1990s, from the study group into action committees, later became a political party, in this paper also described the political progress of PRD in the reform era.
RECICLAGEM DE RESÍDUOS DE CONSTRUÇÃO E DEMOLIÇÃO (RCD): UM ESTUDO DE CASO EM USINA DE BENEFICIAMENTO DE RESÍDUOS EM PETROLINA-PE
Authors: Freita Carolina Larissa Vasconcelos e , Santos Vivianni Marques Leite dos , Santos Júnior José Edilson dos , Silva Thaiane Carla Carvalho da
Published: April 2017

A partir da Resolução No. 307/2002 do CONAMA e da Política Nacional de Resíduos Sólidos, o poder público municipal passou a ser responsável por estabelecer ações para o gerenciamento correto dos Resíduos de Construção e Demolição (RCD’s) ou “entulhos” de obra e as empresas de construção civil para destinação final correta do resíduo gerado, visando diminuir os impactos ambientais, sociais e financeiros causados pela disposição irregular desses resíduos. Neste trabalho realizou-se o levantamento e análise dos dados relativos à reciclagem dos RCD’s da primeira Usina de Beneficiamento de Entulho (UBE) implantada em Petrolina-PE. Foram considerados os vários aspectos envolvidos nesse processo, com o intuito de diagnosticar a situação atual, destacando as potencialidades e fragilidades, além de propor alternativas para melhoria do gerenciamento daqueles resíduos. Concluiu-se que a UBE está funcionando abaixo da sua capacidade, devido à inexistência de material adequado em quantidade para a reciclagem. Contudo, a usina, de fato, contribui para a correta destinação dos entulhos. Propõe-se que, para promoção da gestão dos RCD’s na cidade, são necessárias ações com iniciativa do poder público, voltadas para a educação ambiental para empresas e sociedade, bem como medidas para coleta e descarte adequado dos RCD’s.
PERSPECTIVAS DE MOBILIDADE URBANA SUSTENTÁVEL E A ADESÃO AO MODO CICLOVIÁRIO
Authors: Diógenes Keully Crstynne Aquino , Araujo Maria Aurelina Farias de , Tassigny Mônica Mota , Bizarria Fabiana Pinto de Almeida
Published: April 2017

Diante dos conceitos de Mobilidade Urbana Sustentável, busca-se caracterizar a bicicleta como meio de transporte, na direção de constituir perfil dos sujeitos usuários e levantar desafios à disseminação desse veículo como alternativa viável de locomoção. Para tanto, realizou-se pesquisa descritiva, com amparo na abordagem qualitativa por meio da análise de conteúdo e quantitativa, com suporte em estatística descritiva e Análise de Cluster. Para análise, utilizou-se dados de 144 participantes, coletados por meio de questionário com perguntas fechadas e abertas. Identificou-se a formação de dois clusters, sendo que o cluster 2 indica maior percentual de jovens, de ambos os sexos, adeptos à bicicleta, o que evidencia maior conscientização desse público sobre questões socioambientais, em virtude da difusão da temática nos últimos anos. Ainda quanto aos resultados, identificou-se os seguintes empecilhos à adesão: o comportamento dos motoristas (27%); a falta de infraestrutura (25%) e a violência urbana (17%) foram os mais citados. Considera-se que a análise por cluster, numa abordagem compreensiva, contribui para a elaboração de políticas públicas para a Mobilidade Urbana Sustentável que considere a segmentação dos usuários, de forma que se projete ações mais aderentes à cada perfil, ou maior sensibilização com amparo nos valores presentes em cada cluster.
Desempenho Financeiro e a Questão dos Investimentos Sócio-Ambientais
Authors: Ceretta Paulo Sérgio , Barba Fernanda , Casarin Fernando , Kruel Maximiliano , Milani Bruno
Published: April 2017

A preocupação com o desenvolvimento sustentável demonstra a busca das empresas pela sua sobrevivência em longo prazo através de uma relação transparente e ética com sociedade, ambiente, funcionários e familiares, empregando ações pró-ativas para projetos voltados à responsabilidade social e garantindo qualidade de natureza social, econômica e ambiental. Esta atitude evidencia uma consciência empresarial de que sua atividade lucrativa impacta a comunidade e o ambiente circunstante e que, garantir que esse impacto seja o menor possível, faz parte de sua atividade empresarial. Esses investimentos, entretanto, geram custos para as empresas, custos que as empresas buscam recuperar através dos benefícios obtidos através desses. O objetivo deste estudo é verificar se existe relação entre os investimentos sócio-ambientais e a performance financeira empresarial. O estudo empírico foi realizado utilizando a análise de dados em painel com uma amostra de 59 empresas que operam no Brasil, com balanço disponível em meio eletrônico, dos anos de 2005 a 2008. Foi identificada relação significativa entre os indicadores sociais externos e a receita líquida e entre indicadores sociais internos, indicadores sociais externos, indicadores sociais externos defasados em um período com o resultado operacional líquido.Palavras-chave: Responsabilidade sócio-ambiental. Performance financeira. Análise de dados em painel.AbstractThe concern with the sustainable development shows the attempt of companies for their survival in the long term through an ethical and transparent relationship with society, environment, employees and their families. They do so by acting on proactive projects aimed on social responsibility and providing the improvement of quality on social, economic and environmental levels. Such procedure evidences an entrepreneurial awareness that their profitable activity has impact on the community and the environment around them and that making this impact as little as possible is also part of their activity. These investments, however, result on costs which companies try to make up for through benefits obtained from the investments themselves. The purpose of this study is to verify whether there is a relationship between environmental and social investments and corporate financial performance. The empirical study was carried out using panel data analysis with a sample of 59 companies operating in Brazil, with social balance-sheet available on-line, from 2005 to 2008. A significant relationship was identified between external social indexes and net income and between internal social indexes, external social indexes, external social indexes lagged for one period with net operational result.Keywords: Environmental and social responsibility. Financial performance. Panel Data Analysis.
PRÁTICAS DE GESTÃO AMBIENTAL EM UNIVERSIDADES BRASILEIRAS
Authors: Engelman Raquel , Fracasso Edi Madalena , Tometich Patricia , Nascimento Luis Felipe
Published: April 2017

As Universidades devem cumprir papel de educação e pesquisa, e servir de exemplo a partir de suas práticas de Gestão Ambiental, minimizando impactos, ao mesmo tempo em que contribuem com a conscientização da sociedade. Assim, este trabalho teve como objetivo identificar práticas de Gestão Ambiental realizadas nas Universidades brasileiras a partir de survey com 75 instituições. O estudo evidenciou que 22 práticas são realizadas por grande parte das Universidades do país. Instituições que priorizam a Gestão Ambiental, implantando SGA e departamento específico para sua gestão, apresentam nível mais elevado de adoção de práticas. As principais motivações estão relacionadas à preocupação com o meio ambiente e conscientizar a sociedade através de projetos de educação/servindo como exemplo. Este resultado demonstra que, apesar das dificuldades, as instituições brasileiras estão voltadas a cumprir com sua responsabilidade ambiental e social. Em relação às principais barreiras foi apontada a falta de recursos, principalmente humanos e financeiros, dificuldade de conscientização dos envolvidos e falta de interesse das próprias IES. É importante que Universidades contem com apoio governamental adequado às suas características, que organizem programas internos de conscientização de servidores, que políticas ambientais sejam prioridade para a gestão das instituições, fazendo parte de seu planejamento estratégico e previsão orçamentária.
Análisis de la aplicación de políticas públicas en el sector turismo. El caso de Colombia
Authors: Díaz Olariaga Oscar
Published: April 2017

Este trabajo presenta, explica y analiza como la aplicación y desarrollo de las políticas públicas y sectoriales impactaron en la evolución y transformación de la industria turística colombiana. Mediante un desarrollo cronológico se va presentando la aplicación de las diferentes regulaciones y políticas públicas y sus impactos socio-económicos en el turismo. Finalmente el trabajo se cierra describiendo el estado de situación actual del turismo colombiano, y mencionando sus grandes retos y desafíos a futuro.