bluuebunny/crossref_metadata_2025_split huggingface dataset:
The Nascent Pan-Canadian Real-world Health Data Network (PRHDN)
Authors: Schull Michael J. , McGrail Kimberlyn , Paprica Alison 
Published: April 2017

ABSTRACT
ObjectiveCanada’s large single payer health systems have created provincial centres with rich, population-wide health and social data holdings that are linkable at the person level. Complementary federal data include a subset of standardized and enriched administrative healthcare data at the Canadian Institute for Health Information, Statistics Canada’s extensive array of survey- and census-based social and geography-based information, and large national datasets that are being created through pan-Canadian initiatives. Unfortunately, these data assets are rarely combined in multi-province or pan-Canadian studies, often because data are not directly comparable from one province to another, or cannot be shared due to legislative or other barriers. There is now growing interest in enabling multi-province studies — even when data are not directly comparable — and in sharing experiences to make more effective use of linked or linkable administrative data across Canada.
ApproachNine provincial and national organizations have created a detailed Implementation Plan for the new PRHDN distributed data network. Without requiring that record-level data leave provincial boundaries, the PRHDN will create shared core research data infrastructure: (i) validated algorithms that implement case definitions applicable across provinces, (ii) harmonized common data and (iii) common analytic protocols. The PRHDN will also establish complementary infrastructure including dedicated personnel to assist researchers and decision makers, joined-up training and capacity building sessions, opportunities to share learning and experience related to linking new datasets such as electronic medical records and omic datasets, and forums for knowledge translation and exchange with decision makers.
ResultsThe PRHDN is already bringing together expertise from across Canada as researchers, decision makers and data custodians begin to identify opportunities for enhanced use of health data in Canadian research, policy making and practice. A simple PRHDN website has been created (https://www.prhdn.ca/) and more than 200 researchers and policy/decision makers have become members of the PRHDN consortium. Surveys of consortium members are identifying priorities for the first algorithm validation work (to-date the top four priorities are mental health, cardiovascular disease, diabetes and respiratory disease) and the PRHDN Leads Team is functioning as a decision-making body, e.g., in discussions with Statistics Canada.
ConclusionsWorking together, provincial and national organizations across Canada have identified concrete steps that can be taken to enable multi-province and pan-Canadian studies based on administrative data within one year of the start of funding. The PRHDN Leads Team is currently discussing the PRHDN vision and Implementation Plan with potential funders.
Out of the mouths of researchers: experiences of involvement
Authors: McKenzie Anne , Haines Hayley 
Published: April 2017

ABSTRACT
ObjectivesThe presentation will

Increase awareness of a range of methods that researchers can use to involve patients and the public (consumers and community members) in linked data research.
Promote shared learning of how these methods have been successfully implemented
Provide insights from researchers, consumers and community members about their experiences of using these methods

ApproachThe University of Western Australia School of Population Health and Telethon Kids Institute established a Consumer and Community Involvement Program (the Program) in 1998 in response to community concerns about linked data research.
Since its inception, the Program has developed a range of strategies, systems and methods to successfully involve consumers and community members in a variety of research projects. These include projects ranging from student and individual projects to large multi-million dollar programs of research.
A key role of the Program has been to increase skills and capacity for researchers at both organisations. In order to do this a series of training workshops were developed in collaboration with a UK consumer advocate. The training workshops cover the foundations and principles, as well as guidance on the implementation of consumer and community involvement in research.
In 2015 - 2016, an online training course was developed to support the needs of researchers using linked data, who were unable to access face-to-face training and to maximise the focus of face to face training on the implementation of consumer involvement. As part of the development of the online training course a series of interviews were recorded with researchers, consumers and community sharing their experiences of consumer and community involvement.
ResultsA wealth of material was collected during the interviews that will be used to enable researchers to learn from their peers conducting linked data research:

Researchers experiences of involving consumers and community members in their linked data research
The benefits of involving consumers and community members in research and tips for how to do this
Consumers and community members experiences of being involved in linked data research
Consumer and community involvement in a range of topics including: child protection and health, cardiology and health services research
Researchers experiences of involvement throughout the research process
The impact of consumer and community involvement on the research

ConclusionThis presentation will promote shared learning of good practice models of consumer and community involvement to the international linked data research community.
Public Attitudes to Integrated Data in New Zealand
Authors: Tibby Che , Potter Deb , McDowell Anna 
Published: April 2017

ABSTRACT
BackgroundStatistics New Zealand stewards the Integrated Data Infrastructure (IDI) which links government administrative data, surveys and the New Zealand Census.
MethodA multi-method, qualitative approach was chosen to investigate attitudes to data integration and the role of the national statistical office.
ConclusionFindings from this research inform Statistics New Zealand's understanding of social license, and provide direction for public engagement and governance.
The impact of dementia and other comorbidities on increased risk of subsequent hip fracture following hip fracture in Australia: a competing risk approach
Authors: Harvey Lara , Mitchell Rebecca , Brodaty Henry , Draper Brian , Close Jacqueline 
Published: April 2017

ABSTRACT
ObjectivesOlder people with hip fracture are at increased risk of subsequent hip fracture. This study evaluates the relative impact of dementia, osteoporosis and other comorbidities on the increased risk of sustaining a subsequent fall-related hip fracture within ten years of a fall-related hip fracture, accounting for the competing risk of death.
ApproachLinked hospital and mortality data for all individuals aged 65 years and older admitted to a hospital in New South Wales, Australia, with a fall-related hip fracture over a ten year period between 1 January 2003 and 31 December 2013 were analysed. Dementia, osteoporosis and comorbidities contributing to the Charlson Comorbidity Index (CCI) were identified using up to 40 additional diagnosis codes recorded in the hospitalisation data and a 1 year lookback period. A competing risk approach was used to account for the high mortality inherent in this older population. Cause-specific hazard ratios (CSHRs) were calculated with age, sex and comorbidities included as covariates in the models. To account for the relatively long time frame of the study, dementia, osteoporosis and other CCI comorbidities were treated as time-dependent covariates.
Results Of the 50,290 individuals who sustained a fall-related hip fracture during the study period, 7.6% (4,102) had a subsequent fall-related hip fracture. Compared to people without dementia, people with dementia were more likely to die within 30 days of initial fracture (12.6% vs 6.4%, p<0.0001) and to sustain a subsequent hip fracture (9.8% compared to 6.6%, p<0.0001). In the multivariate hazards regressions, people with dementia had a 2.5 fold (CSHR 2.48, 99.9%CI 2.38-2.58, p<0.0001) increased risk of death and two fold (CSHR 2.02, 99.9%CI 1.81-2.26, p<0.0001) increased risk of second hip fracture. Of the comorbidities, metastatic cancer (CSHR 3.48, 99.9%CI 3.12-3.88, p<0.0001) and severe liver disease (CSHR 3.24, 99.9%CI 2.62-4.01, p<0.0001) were most strongly associated with death. Renal disease (CSHR 1.53, 99.9%CI 1.24-1.88, p<0.0001), osteoporosis (CSHR 1.44, 99.9%CI 1.28-1.62, p<0.0001), congestive heart failure (CSHR 1.42, 99.9%CI 1.24-1.64, p<0.0001), and acute myocardial infarction (CSHR 1.22, 99.9%CI 1.03-1.44, p<0.0001) were associated with increased risk of subsequent hip fracture.
Conclusions Hip fractures are costly injuries in terms of health care resources and the impact on the individual and their families. People with dementia are at twice the risk of sustaining a second hip fracture and death compared to people without dementia. Interventions including known effective treatments for osteoporosis as well as falls prevention should be targeted to this vulnerable population.
How do you interpret a billion primary care records?
Authors: Heaven Martin , McGinn Laura , Lowe Sarah , Bailey Kerry , Lyons Ronan Anthony 
Published: April 2017

ABSTRACT
BackgroundResearch into General Practitioner (GP) records is relatively straightforward when it comes to establishing the prescribing of a particular drug or a specific disease group, but what if you want to use it to make more general inferences about health service utilisation?
Supporting People is a project that is examining GP recorded activity for a cohort of people around a known crisis point in their lives – a time when they were at risk of becoming homeless. Examining GP recorded data prior to and post this crisis point revealed a definite pattern in the volume of recording activity by the GPs. Records increased over the year leading up to the crisis date and then reduced in the year following the crisis date.
ObjectivesTo understand what we were observing in this group of patients required a much deeper understanding of the GP event database available in the SAIL Databank at Swansea University. What is included and what do the associated dates relate to? Were some categories of GP recording, such as prescribing, tests, diagnostics, or signs and symptom recordings, more stable than others in establishing the time trend, and could we identify and eliminate noise? Can a suitable control population be constructed from the data, and if so, how?
ApproachTo establish this we explored just over 1 billion unique Read coded records generated in the time period 1999 to 2015 by GP practices participating in the provision of anonymised records to SAIL, aligning, filtering and summarising the data in a series of observational exercises to generate hypotheses related to the capture and recording of the data.
Results A fascinating journey through 1 billion GP practice generated pieces of information, embarked upon to aid interpretation of our Supporting People results, and providing insights into the patterns of recording within GP data.
Psychiatric research platform within SAIL - Linkage of prospectively ascertained phenotypically rich and genetic data to routinely collected anonymised records.
Authors: McGregor Joanna , John Ann , Lloyd Keith 
Published: April 2017

ABSTRACT
ObjectivesWe have conducted a feasibility study linking clinically rich survey data to routine data to create a platform for psychosis research in Wales: K Lloyd et al (2015), A national population-based e-cohort of people with psychosis (PsyCymru) linking prospectively ascertained phenotypically rich and genetic data to routinely collected records: overview, recruitment and linkage, Schizophrenia Research. Now we expand upon this through the linkage of large clinically rich cohorts with a range of mental health diagnoses along with genetic data to conduct validation exercises, develop novel methodologies, assess genetic and environment interactions and outcomes and address hypothesis-driven research questions.
ApproachThrough collaborations between the Farr Institute, Cardiff University based MRC centre for Neuropsychiatric Genetics and Genomics and the National Centre for Mental Health (NCMH) clinically rich data and genetic (CNVs, SNPs & polygenic scores) data from around 6000+ participants recruited from a variety of mental health research studies including ‘PsyCymru’, ‘Genetic susceptibility to cognitive deficits study and NCMH amongst others will be loaded and linked to the datasets within SAIL. The analysis plan would firstly include validation exercises to compare the data between sources. Methodologies would be developed using this data to determine illness onset, relapse, chronicity, severity and response to treatment applied to large population-based mental health e-cohorts.
ResultsBy pooling together health service data, genetic variants, environmental and lifestyle factors, phenotypic and endo-phenotypic (cognitive scores) along with the ability to ascertain temporal relationships afforded by the longitudinal perspective available in SAIL we may be able to evaluate potential risk factors, assess the complex GxE interactions that lead to disease progression, and assess outcomes such as prognosis, remission, relapse and premature mortality. The on-going routine updates provide us with the opportunity to follow-up these individuals across multiple health care settings in a cost effective and in-obtrusive manner and to carry out health services utilization/benefit and treatment surveillance in a naturalistic setting. This resource will continue to expand over the coming years in size, breadth and depth of data, with continued recruitment and additional measures planned.
ConclusionTo advance mental health research by developing our understanding of the causes, course and outcomes of mental illness that may lead to the development of better diagnostic classification, predictive, preventative strategies and therapeutic approaches.
The Administrative Data Research Network’s National Citizen’s Panel – A step towards bridging public concerns about research using administrative data.
Authors: Knight Judith 
Published: April 2017

ABSTRACT
BackgroundThe content of administrative records are both confidential and personal, therefore the use of administrative data for research purposes is rightly and naturally of concern to us all. It is highly likely that unless public concerns can be understood, met and public confidence and support gained, that the role of research using administrative data cannot develop further.
AimsAs a member of the general public you may well ask, how will this research help me? The Network enables researchers across the UK to gain access to linked de-identified administrative data to benefit society i.e. research that could change health care systems, improve the distribution of funds to needier areas or has the potential to reduce crime.
MethodTo extend the Network’s reach, the Administrative Data Research Network (ADRN) in addition to a breadth of communications and public engagement activities across the UK is developing a UK National Citizens Panel (CP). The panel will provide a representation of public views on potential changes to Network policy, procedures, governance and service provision issues. The CP will also assist with testing our public facing communications, e.g. events, website and materials.
ResultsThis paper would like to present the ADRN's case and scope for a Citizens Panel, the model adopted and its progress to date.
Funded by the Economic & Social Research Council, the ADRN, set up as part of the UK Government’s Big Data initiative, is a UK-wide partnership between universities, government bodies, national statistics authorities and the wider research community.www.adrn.ac.uk.
Data linkage to develop a mortality outcome measure for patients with sepsis
Authors: Patton Andrea , Marwick Charis , Bateson Meghan 
Published: April 2017

ABSTRACT
BackgroundMonitoring sepsis outcomes over time is necessary to evaluate healthcare improvement interventions. However, it is a clinical diagnosis (infection with a systemic inflammatory response) that is not routinely recorded electronically. We aimed to create a proxy measure for sepsis mortality using routine data.
ObjectiveICD-10 codes on hospital discharge summaries are often used to monitor disease outcome but the presence of a code for a specific infection, e.g. pneumonia, does not give any indication of severity of illness i.e. whether the patient had sepsis. There are ICD-10 codes that specifically indicate sepsis, most commonly A40 and A41. However, monitoring mortality using ICD-10 is susceptible to coding bias as practice differs between and within health boards. Using ICD-10 codes alone does not differentiate between changes in mortality and changes in coding practice.
As recommended in the “Sepsis 6” care bundle, all patients with suspected sepsis should have a blood culture taken urgently. A previous study showed that having a blood culture taken was associated with a 3-fold increase in risk of mortality, over other hospital inpatients, independent of having a positive or negative result. We tested whether having a blood culture taken might be a suitable proxy marker for sepsis and compared it to data using ICD-10 sepsis codes.
MethodData on all patients that had a blood culture taken in hospital in Scotland between 2011 and 2013 were obtained from hospital laboratory systems. These data were linked to hospital discharge summary records (SMR01) and death records. Monthly 30-day mortality rates from date of blood culture were calculated. Patients with an A40 or A41 ICD-10 code were extracted from hospital discharge summary records (SMR01) and linked to deaths records. Monthly 30-day mortality rates from date of admission were calculated over the same period of time. Blood culture sampling and, more strikingly, the use of A40/A41 codes increased over the study period. Blood culture data would indicate no significant change in 30-day mortality over the study period but coding data would indicate a 20% relative reduction.
ConclusionA40/A41 codes lack sensitivity as the numbers of patients with these codes is many times lower than estimates of sepsis incidence, and coding practice changed dramatically over time. Blood culture data lacks specificity as many patients that had a blood culture taken will end up with an alternative diagnosis. Combining a broader group of infection codes with blood culture data may be a more useful measure.
Panning for gold: finding medical treatment data in insurance records
Authors: Avery Daniel 
Published: April 2017

ABSTRACT
ObjectivesIn our Chinese biobank of half a million people, we use data gathered from health insurance agencies to supplement our follow-up. We have 217,000 participants with insurance records including a breakdown of what the insurance paid for, totalling 1.6 million insurance records and 60 million chargeable items. The objective was to find ways of using this information to enhance our Electronic Health Records (EHRs) by adding usable and reliable treatment data, as a basis for future research.
ApproachMachine translations of every charge description were produced so that early investigation could be done by analysts who were not Chinese speakers. Key phrases were produced by specialist clinicians in an iterative process. We began by focussing on haemodialysis treated ESRD, heart failure, and coronary revascularisation. With our refined techniques, key phrase searches were developed which could be tied into ongoing validation procedures elsewhere in the study (e.g. cancer) or which could be validated using existing data from other sources (e.g. death reporting).
ResultsMachine translation provided both problems and unexpected solutions. While it could be inaccurate (‘Divine Comedy’, ‘semen’, ‘corpse cuisine’), more often than not it provided unexpected advantages, converting regional, archaic, or otherwise uncommon Chinese terms into the most common English equivalent.The majority of chargeable elements in our insurance records are not treatment data per se, but instead hospital fees, generic care, and records of tests without result data. This makes identification of relevant treatment data challenging. Targeted key phrase searches proved successful, demonstrating that it was possible to use this data to answer research questions, even teasing out details which would otherwise not be available to us (e.g. ESRD, location and type of revascularisation).
Validation of these findings is ongoing. For example, we found that 395 of our participants have been charged for ‘corpse cuisine’ (more accurately ‘corpse preparation’). Comparing these figures to our death records (an independently gathered source) we confirmed that 326 are known to be dead, and we added the remaining 69 to our list for active follow-up. Similarly, will we be seeking hospital records for the 528 patients who are receiving cancer treatment with no record of cancer.
ConclusionOur methods for dealing with treatment data are still being refined, but early results are looking promising. We are investigating standardisation to ICD-10-PCS codes, developing more treatment-based diagnoses, and feeding our findings back into our ongoing validation program.
Alcohol-related injury admission trends in adolescents: A comparison between Western Australia and England
Authors: O'Donnell Melissa , Sims Scott , Maclean Miriam , Gonzalez-Izquierdo Arturo , Gilbert Ruth , Stanley Fiona 
Published: April 2017

ABSTRACTObjectivesThis study aims to determine trends in hospital admissions for alcohol-related injuries among young people in Western Australia and England and whether these admissions are intentionally or unintentionally caused. In addition, this study examines variation in trends by sex and age-groups to determine groups most at risk.
ApproachAnnual incidence rates for alcohol-related injury rates were calculated using hospital admissions data for Western Australia and England. We compared trends in different types of alcohol-related injury by age and gender.
ResultsAlcohol-related injuries have increased significantly from 1980-2009 (from 2 to 12 per 10,000). Conversely, alcohol-related injury rates have declined in England since 2007. In England self-harm is the most frequently recorded cause of alcohol-related injury. In Western Australia, unintentional injury is most common, however violence-related harm is increasing for boys and girls. Boys aged 16-17 in Western Australia had the highest rate of alcohol-related injury (27.1/10,000), which was markedly higher than for 16-17 year old girls in Western Australia (16.6/10,000), girls in England (14.1/10,000), or boys in England (13.2/10,000).
ConclusionAlcohol-related harm is a significant public health issue, and in Western Australia there is a concerning trend of increasing alcohol-related injuries among young people. Alcohol-related harm of sufficient severity to require hospital admission is increasing among adolescents in Western Australia. Declining trends in England suggests this trend is not inevitable or irreversible. More needs to be done to address alcohol-related harm, and ongoing monitoring is required to assess the effectiveness of strategies.