bluuebunny/crossref_metadata_2025_split huggingface dataset:
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.