bluuebunny/crossref_metadata_2025_split huggingface dataset:
Young people’s views about consenting to data linkage: Findings from the PEARL qualitative study
Authors: Audrey Suzanne , Brown Lindsey , Campbell Rona , Boyd Andrew , Macleod John 
Published: April 2017

ABSTRACT
BackgroundElectronic administrative data exist in several domains which, if linked, are potentially useful for research. However, benefits from data linkage should be considered alongside risks such as the threat to privacy. Avon Longitudinal Study of Parents and Children (ALSPAC) is a birth cohort study. The Project to Enhance ALSPAC through Record Linkage (PEARL) was established to enrich the ALSPAC resource through linkage between ALSPAC participants and routine sources of health and social data. Qualitative research was incorporated in the PEARL study to examine participants’ views about data linkage and inform approaches to information. This paper focusses on issues of consent.
MethodsDigitally recorded interviews were conducted with 55 participants aged 17-19 years. Terms and processes relating to consent, anonymization and data linkage were explained to interviewees. Scenarios were used to prompt consideration of linking different sources of data, and whether consent should be requested. Interview recordings were fully transcribed. Thematic analysis was undertaken using the Framework approach.
ResultsParticipant views on data linkage appeared to be most influenced by: considerations around the social sensitivity of the research question, and; the possibility of tangible health benefits in the public interest. Some participants appeared unsure about the effectiveness of anonymization, or did not always view effective anonymization as making consent unnecessary. This was related to notions of ownership of personal information and etiquette around asking permission for secondary use. Despite different consent procedures being explained, participants tended to equate consent with ‘opt-in’ consent through which participants are ‘asked’ if their data can be used for a specific study. Participants raising similar concerns came to differing conclusions about whether consent was needed. Views changed when presented with different scenarios, and were sometimes inconsistent.
ConclusionsFindings from this study question the validity of ‘informed consent’ as a cornerstone of good governance, and the extent to which potential research participants understand different types of consent and what they are consenting, or not consenting, to. Pragmatic, imaginative and flexible approaches are needed if research using data linkage is to successfully realise its potential for public good without undermining public trust in the research process.
An Investigation into the use of Health Services in Wales by those who Self–report Disability using Linked Data
Authors: Ahern Aideen , Jones Melanie 
Published: April 2017

ABSTRACT
ObjectivesDisability is strongly related to employment disadvantage (Berthoud, 2008). There is a scarcity of disability research within labour economics, therefore this project will add to the evidence gap by examining existing survey data linked to medical data. As part of a wider empirical investigation into the influence of disability on economic outcomes using survey data, we examine the additional value of linked data. This analysis of linked data is aimed to form an initial exploratory project to identify the potential benefits and limitations of data linking in this context. The work aligns closely with the WG Programme to Maximise the Use of Existing Data which seeks to explore how the Welsh Government can potentially use linked data to improve the evidence base for policymaking. The findings will feed into the evidence base relating to the Programme for Government. This project hopes to increase the understanding of the relationships between disability and employment, to further inform policy makers and to create awareness among researchers of the benefits of using linked data.
ApproachThe project will involve examining the different patient pathways for those who self-report disability in the National Survey for Wales (NSW) 2012-15. The proposal therefore involves linking data (using SAIL)at the individual level from administrative data including records from the Welsh Demographic Service, GP event data, Patient Episode Database for Wales and A&E data to individual level responses in the NSW. The aim of this project is to examine differences in objective health indicators, such as number of GP activity between those who currently self-report disability (limiting long-standing illness), and those who do not. In addition, we will explore the effects that disability status has on employment status within Wales. While social and economic disadvantage associated with disability is frequently identified using self-reported information on disability in survey data, far less is known within social science about the medical history/conditions of these individuals. It will also be possible to control for/examine the interaction with a range of other demographic characteristics (age, gender etc) which are available in the NSW.
ResultsIndividuals in Wales who self-report disability use primary and secondary health services more so than non-disabled individuals.
ConclusionThis work has the potential to contribute significantly to the Employment, Education and Wellbeing Work package (RP2) of the ADRC-W.
Linking Genomic Data with Phenotypes Derived from Electronic Health Records.
Authors: Appleby Phil 
Published: April 2017

ABSTRACT
ObjectivesTo build a searchable database for SNP array data from the GoDARTS data set, in which a combined view of genotype data derived from multiple assay platforms can be extracted for both candidate gene and GWA studies and to combine this with a database of phenotype descriptors which are saved as shareable, reusable database objects and which persist beyond the lifetime of any analysis script.
To build databases and software solutions which can be made readily available to laboratories and academic institutions which may not have the resources to adopt one of the larger Genotype / Phenotype integration solutions.
ApproachTwo databases were built. The first is a hybrid Genomics one in which variant and study subject data are stored in a database with variant detail data retained in Variant Call Format (VCF) files. The second database saves phenotype descriptors as shareable, modifiable database objects alongside a table of events derived from the set of available Electronic Health Records (EHRs). All detail from the EHRs is also retained in the database which is delivered on a project by project basis using virtual machines.
Both databases are accessed using web applications, allowing delivery of data to the users’ desktops.
ResultsTraditionally the process of deriving genotype and phenotype data for epidemiological studies can be a laborious one with genotype data being retrieved from large, flat data files and phenotypes being defined by codes in flat EHR records which are tested and filtered in scripts, written for analysis in a statistical package such as Stata, SPSS or R.
In our solution, genotype data can be retrieved in seconds and delivered to the users’ desktops. Similarly lists of cases and controls can be downloaded based on saved or transient phenotype descriptors. Phenotypes descriptors derived from codes in Electronic Health Records are saved as reusable, shareable and modifiable database objects objects, allowing rapid retrieval of phenotype data.
ConclusionThe ability to access Genomic data from multiple assay platforms and to use this in conjunction with shareable libraries of phenotype objects allows rapid access to data for analysis using both Genomic SNP Array data and linked Electronic Health Records. Analysis on data extracted from our linked databases should proceed more rapidly and should be more easily reproducible.
Identifying superusers of health services with mental health and addiction problems
Authors: Quail Jacqueline , Anderson Maureen , Osman Meric , De Oliveira Claire , Wodchis Walter , Muhajarine Nazeem , Pruden Nansel Kathie , McLeod Valerie , Baetz Marilyn , Teare Gary , Lafontaine Tania , Pelly Judy , Schaefer Joelle , Baker Margaret , Neudorf Cory 
Published: April 2017

ABSTRACT
ObjectiveThe objective of this research is to identify people with mental health and/or addiction (MHA) problems and determine characteristics that led to them becoming a superuser of health services (i.e., the most expensive 10% of all health service users).
ApproachIn Saskatchewan, Canada, we used hospital and physician administrative data spanning 2005 to 2014 to identify the MHA cohort. We will calculate total health care costs for each individual and assign them to one of three groups: low cost users (<50th percentile), moderate cost users (50-<90th percentile), and superusers (90th percentile and above). For each group, we will describe sociodemographic characteristics, disease characteristics, and use of health services, and describe their trajectory towards becoming a superuser. Predictors of becoming a superuser will be identified. A novel aspect of this research is the inclusion of sociobehavioural risk factors by linking 4 population and public health administrative datasets obtained from the Saskatoon Health Region to the provincial administrative health services data. Sociobehavioral factors are widely accepted as strongly influencing health. Each database was selected because it captures data on a sociobehavioral factor. The Oral Health Database contains data on early childhood development, including early childhood tooth decay, dental health status, and tobacco use in elementary school-aged children. The Integrated Public Health Information System contains data on self-reported ethnicity, the occurrence of an infectious notifiable disease, and behavioural and social risk factors for the notifiable disease. The Sexually Transmitted Infection (STI) Clinic Data contains data on exposure to and contraction of STIs, as well as referrals given for mental health and/or addiction services. Finally, the Street Outreach Program provides services to individuals living a high-risk lifestyle on the street. Their database contains information on self-reported ethnicity, hypodermic needle exchange, and homelessness.
ResultsIn a province of approximately 1.1 million people, we identified 417,724 people as having at least 1 MHA diagnosis, of which two-thirds were depression and/or anxiety. Substance abuse was found in 9.4%, and schizotypal and psychotic disorders were found in 7.9%, of the MHA cohort,
ConclusionIndividuals with severe MHA problems account for a disproportionate amount of health care costs. Identifying predictors of becoming an MHA superuser may afford an opportunity to intervene, possibly years in the future, to prevent a person from becoming a superuser. If true, this has significant implications for health care costs, wait times to access health services, and quality of life for this vulnerable population.
Abuse and neglect in children with disabilities: risk varies by type of disability
Authors: Maclean Miriam , Sims Scott , Hansen Melanie , Leonard Helen , Bourke Jenny , Bower Carol , O'Donnell Melissa 
Published: April 2017

ABSTRACT
ObjectivesTo examine the risk of abuse and neglect for children with different types of disabilities taking into account other existing adversities, including socioeconomic disadvantage, parental mental health issues, etc.
ApproachPopulation based record linkage study of all children born between 1990-2010 utilising the Western Australian Register of Developmental Anomalies, the Intellectual Disabilities Exploring Answers database, Health data and Child Protection data.
ResultsAfter taking into account existing adversities intellectual disability was associated with the highest risk of a child maltreatment allegation and entering out-of-home care. Further results include risk by level of intellectual disability and causes of disability.
ConclusionDifferent disabilities are associated with differing risk of child maltreatment and child protection involvement. Groups that are considered at higher risk require services to identify and address the support needs of this group and determine how prevention and early intervention can lower the risk for child abuse and neglect in this vulnerable group.
Are There Long-term Academic Benefits of Full-Day Kindergarten? A Population-Based Analysis
Authors: Brownell Marni , Nickel Nathan , Chateau Dan , Taylor Carole , Crockett Leah , Katz Alan , Sarkar Joykrishna , Burland Elaine 
Published: April 2017

ABSTRACT
ObjectiveDespite the implementation of full-day kindergarten (FDK) in several Canadian provinces, there is little evidence on the long-term outcomes associated with this program. Our objective was to use population-level linked data sources from Manitoba, Canada, to determine whether FDK results in better long-term academic outcomes and reduced inequities in outcomes.
ApproachUsing data held in the Manitoba Centre for Health Policy Data Repository we examined provincial reading and numeracy assessments in grades 3, 7, and 8 and a performance index in grade 9 for students in two Manitoba school divisions between 1999-2012. In School Division A (SDA), FDK is targeted in the lowest SES schools; in School Division B (SDB) FDK was gradually introduced universally. SDA FDK students were matched using propensity scores to students in an adjacent school division with similar socioeconomic status (SES) but no FDK; in SDB a stepped-wedge design was used. Logistic regressions accounted for confounders including classroom effects and sex. Gamma sensitivity analyses were used to assess sensitivity of results to unmeasured confounding. The Kakwani Progressivity Index (KPI) determined how FDK affected equity.
ResultsThere were 224-544 children in FDK and 869-1923 non-FDK matches in SDA, depending on the outcome examined; numbers in SDB ranged from 335-707 (FDK) and 222-475 (non-FDK). Including interactions, 35 comparisons were examined in SDA and 24 in SDB. None of the outcomes examined in SDB showed statistically significant effects of FDK that were robust to unmeasured confounding. In SDA there were only 3 statistically significant and robust findings of benefits of FDK, all related to math. Comparisons of KPIs for FDK and non-FDK children in both school divisions demonstrated inequities in outcomes associated with SES, however there were no significant differences in equity between the FDK and non-FDK children for any of the outcomes.
ConclusionsOur findings indicate no apparent benefits of universal FDK, and limited benefits from targeted FDK, specifically long-term improvements in numeracy for low-income girls. No reductions in inequity were found. Decisions regarding FDK implementation should weigh the costs of this program against the limited long-term academic benefits.
Algorithms for assessing person-based consistency among linked records for the investigation of maternal use of medications and safety
Authors: Tran Duong , Havard Alys , Jorm Louisa 
Published: April 2017

ABSTRACTObjectivesPerinatal records linked to pharmaceutical claims and other administrative data provide a powerful resource to investigate maternal use of medications and safety. In this population-based project, data quality assessment was performed on the consistency of linked records brought together from several data collections to ensure reliable links for data analysis.
ApproachPerinatal data for the Australian states of New South Wales (NSW) and Western Australia (WA) were linked to pharmaceutical claims by a Commonwealth integrating authority, while linkage to hospital admission, emergency department (ED), mortality and congenital notification data was performed by respective State-based data linkage units. All de-identified records belonging to a unique person ID were sorted chronologically. To assess the consistency of unique persons, both within and across States, algorithms were developed based on pregnancy plurality and birth order, gestation, parity, maternal age and sex, date of delivery, dates of health service use, and State where the claim was made.
ResultsThe dataset included 595,456 NSW and 188,014 WA mothers with respectively 937,344 and 295,095 pregnancies delivered between 2003 and 2012. The information brought together through linkage was highly consistent for the majority of mothers and infants. Inconsistencies are identified in 742 cases, including negative inter-pregnancy period, highly illogical parity, highly inconsistent maternal age, maternal gender being systematically recorded as male, use of health services after date of death, and different infants sharing a common ID. These cases will be excluded from analyses. Date of delivery was corrected for 667 pregnancies, using date of birth recorded in the infant’s admission and ED records, and date of the mother’s admissions. Among admission and ED records, over 8000 needed correction in infant age due to typographical errors, 1820 were duplicates, while 1000 had discrepancies between dates of birth, date of admission and separation. There were 455 deaths, mostly neonates, identified by status of admission or ED discharge but not recorded in mortality data. The majority of these deaths were confirmed by the status of neonatal discharge at birth. There were 3404 women who had a single unique ID according to Commonwealth linkage but more than one unique IDs according to State-based linkage. 2827 mothers had births recorded in both NSW and WA.
ConclusionQuality assessment indicated high consistency among linked records. The set of algorithms developed in this project can be applied to similar linked perinatal datasets to promote a consistent approach and comparability across studies.
#BritainBreathing: Codesigned citizen science to map seasonal allergy symptoms across the UK
Authors: Hassan Lamiece , Cruikshank Sheena , Vigo Markel , Jay Caroline , McClean Indira , Brass Andy 
Published: April 2017

ABSTRACTObjectivesSeasonal allergies, hay fever and asthma affect approximately one in four people and the incidence is increasing. Whilst the causes are unknown, hypotheses propose associations with environmental changes, exposure to pollutants and decreased exposure to childhood infections. High resolution datasets on pollen count and pollution are available; however there is no equivalent for incidence of seasonal allergy symptoms. We planned a national citizen science project using smartphones to gather data from the general population on seasonal allergy symptoms, and where and when they occur. The resulting dataset will be linked with other publicly available data, enabling better understanding of allergy triggers. This is a joint project between the Royal Society of Biology, the British Society for Immunology, and The University of Manchester.
ApproachIn spring 2015, two codesign workshops were held for members of the public with seasonal allergies and/or asthma (n=33). Guided by researchers, attendees used paper prototyping techniques to illustrate the functionalities of a mobile application. They also prioritised functions for inclusion within the app, discussed data sharing options and suggested material for the accompanying project website (www.britainbreathing.org). Following codesign workshops, designs and requirements were collated, refined and used to build the first version of the application in Android.
ResultsWorkshop feedback indicated that potential users prioritised simple, personal tracking. They also valued the ability to access information about symptom frequencies among other users locally. Support for academic research was high, although most wanted some control over data sharing. People were comfortable with GPS data being collected, provided it did not impinge on privacy. We agreed to make data openly available via an interactive widget on the project website. The resulting first version of the application enables personal symptom tracking and will be released in March 2016 via the Google Play store (free of charge). A national media campaign will drive recruitment, alongside inclusion in the European City of Science 2016 programme in Manchester. Emerging data on the incidence of allergy symptoms by location will be presented.
ConclusionCitizen science can be more than simply crowdsourcing data. We demonstrated that paper prototyping was a feasible and useful technique for codesigning an application with members of the public. Furthermore, workshop feedback indicated a high level of support for citizen science, provided users gained simple, personalised feedback. Further research is required to determine how codesign processes influence subsequent participant recruitment and engagement in citizen science projects.
Introducing the PRIDAL model for linking routine health and identifiable patient reported questionnaire data
Authors: Kingston Mark , Heaven Martin , Snooks Helen , Hutchings Hayley 
Published: April 2017

ABSTRACTObjectives

To present an efficient privacy-protecting model (PRIDAL) for linking routine and identifiable patient-reported research data.
To describe the application of the PRIDAL model with within a major portfolio trial linking a range of health and demographic datasets pertaining to >230,000 patients, alongside >2,300 questionnaires.
To summarise the lessons learned from the application of the PRIDAL model.

ApproachThe rise in availability, quality and use of routine health data has resulted in well-developed methods for anonymised linkage of data from multiple sources. However methods for combining identifiable data (e.g. patient-reported questionnaires) with routine anonymised data are not yet tried and tested. Linking these data presents opportunities to improve the feasibility and effectiveness of observational and experimental studies, but emerging data linkage processes must address the appropriate balance between data security and usability. The Process for Routine and Identifiable Data Linkage (PRIDAL) was devised to efficiently link routine hospital data and patient-reported quality of life and quality of care questionnaire data as part of the PRISMATIC trial (http://www.trialsjournal.com/content/14/1/301). This is a mixed methods progressive cluster randomised trial of the efficacy of an emergency admission risk prediction tool in primary care, funded by the NIHR HS&DR programme. PRIDAL was conceived by a group of specialists in e-trials, health informatics, information governance and process mapping who reviewed data sources, flows, owners, and security to develop a practical and intuitive process model.
ResultsWe will present the PRIDAL process model and describe its application in relation to the PRISMATIC study. We will demonstrate that the model achieves high data matching rates (>99%), and consider the lessons learnt from its application.
ConclusionsThe linking of routine health and patient self-reported data presents a valuable opportunity in health research, but clear, replicable models, are needed to support ethical and practical data linkage. We present the fully tested PRIDAL model as a potential solution.