bluuebunny/crossref_metadata_2025 huggingface dataset:
Predicting who applies to Public Housing using Linked Administrative Data
Authors: Hinds Aynslie , Bechtel Brian , Distasio Jino , Roos Leslie L , Lix Lisa
Published: April 2017

ABSTRACT

ObjectivePublic housing residents, who live in low income government rental housing, are often in poorer health than the rest of the population. However, few studies have been able to untangle the relationships between health and public housing residency, and to assess whether health contributes to the decision to apply. We used linked population-based administrative data from one Canadian province to compare the health and health service use of people who applied to public housing to that of people who did not apply.

ApproachAdministrative data housed in the Manitoba Centre for Health Policy’s Population Health Research Data Repository were used to identify a cohort of individuals who applied to public housing in 2005 and 2006. They were matched one-to-one to a cohort from the general population using socio-demographic variables. A population registry provided demographic and geographic characteristics. Economic measures included receipt of income assistance and an area-level measure from the Statistics Canada Census. Measures of health and health service use were derived from hospital, physician, emergency department, and prescription drug databases. Conditional logistic regression was used to test the association between a public housing application and health status and health service use, after controlling for income.

ResultsThere were 10,324 individuals in each of the public housing applicant and matched cohorts; the majority were female (72.4%), young (62% less than 40 years), urban residents (61.2%), and received income assistance (52.8%). A higher percent of the public housing applicant cohort had physician-diagnosed physical and mental health conditions and used more health services compared to the matched cohort. Having a physician-diagnosed respiratory illness (odds ratio [OR] = 1.14, 95% confidence interval [CI] 1.05,1.25), diabetes (OR = 1.24, 95% CI 1.09,1.40), schizophrenia (OR = 1.58, 95% CI 1.30,1.92), affective disorders (OR = 1.37, 95% CI 1.27,1.48), and substance abuse disorders (OR = 1.46, 95% CI 1.25,1.71) were associated with an increased likelihood of applying for public housing, while being diagnosed with cancer (OR = 0.76, 95% CI 0.61,0.96) was associated with a decreased likelihood of applying, after controlling for income differences. High health service users were also more likely to apply for public housing, after controlling for income differences.

ConclusionIndividuals who move into public housing are in poor health before they apply. Health and social service supports that are co-located with public housing facilities may help to ensure that residents have successful tenancies.
Profile Matching of Brazilian Birth and Mortality Records where microcephaly is recorded.
Authors: Stevens Antony , Costa Roberta Maria Leite , Rabello Neto Dacio de Lyra
Published: April 2017

ABSTRACT

BackgroundIn Profile Matching the term "Profile" means that the information available about an individual could be the same as that available for some other individuals.

Reduced versions of birth and mortality records are made publicly available by the Brazilian Ministry of Health and this study covers the years 1996 to 2013. Date of birth, sex and municipality of residence are available in both types of record, so their combination could be studied as a pseudo-identifier. The municipality could be different at the two events so the results outlined here must be seen as a first cut.

MethodThe ICD 10 code for microcephaly is Q02. Among the mortality records where Q02 was recorded either as a basic cause or in one of the other lines there were 1676 combinations of the three variables. All but three of them were unique and the remaining three each occcurred with only two records. For 1324 of these records the year of birth was between 1996 and 2013 so that we could reasonably expect these combinations of values among the birth records. However, there were only 204 birth records with combinations that matched and where Q02 was recorded. Possible reasons for the difference could include i) underreporting of births, ii) the failure to detect microcephaly at birth registration and iii) the possibility that microcephaly can only be securely identified sometime after a birth would normally be registered.

ResultsAmong the birth records there were 2349 combinations where Q02 was mentioned as a birth anomaly. All but seven of them were unique and the remaining seven each occcurred with only two records. Corresponding to these combinations there were 1416 combinations found among the mortality records. These were found in 2149 records. However in only 541 of the mortality records was there a mention of Q02. It appears as the basic cause of death in 204 of these 541 records. It could be that such a small number of deaths attributed to Q02 is consistent with best medical opinion.

ConclusionIt is easy to dismiss these apparent discrepancies as poor recording. Some of it may be, but it could be that doctors were faithful to what they observed. The next step is have a clear picture of what was recorded, like other types of birth defect, when Q02 was not observed in both records of a match.
Incidence, recurrence and predictors associated with recurrence of low birth weight in Northern Tanzania
Authors: Mahande Michael Johnson , Obure Joseph , Mvunta Miriam Hamisi
Published: April 2017

ABSTRACTBackgroundLow birth weight (LBW) is an important indicator of newborn survival and is associated with higher risk of infant mortality, morbidity and long term health consequences later in life. Little has been explored on the recurrence of LBW and associated risk factors in developing countries including Tanzania. This study aimed to determine incidence, recurrence and associated risk factors for in Northern Tanzania.MethodsThis was a retrospective cohort study using maternally-linked data from Kilimanjaro Christian Medical Centre (KCMC) medical birth registry. A total of 48,008 births from 8,417 women who delivered live born between 2000 and 2014 were followed for subsequent deliveries. Recurrence risk with 95% CI for LBW and associated risk factors were estimated in a multivariate log binomial model while accounting for correlation between births of the same mother.ResultsIncidence of LBW was 7.9%. The recurrence rate of LBW was 24.9% compared with 5.9% for those who had normal birth weight babies in first pregnancy. This corresponded to a relative risk of 3.7 (95% CI: 3.10 – 4.52). Some maternal conditions in the first pregnancy were associated with increased risk of LBW in the subsequent pregnancy. These include; HIV positive status (RR 2.0; 95% CI 1.26 – 3.21), preterm birth (RR 1.2; 95% CI 1.03 – 1.63) and preeclampsia (RR 1.8; 95% CI 1.26 – 2.45). Only preeclampsia in the first pregnancy was associated with increased risk of recurrent of LBW (RR: 1.6 95% CI 1.01-2.54).ConclusionAlthough the incidence of LBW is low in the study population, but the recurrence risk is high. Preeclampsia in the first pregnancy was associated with recurrent LBW. Early prenatal identification of women at risk of preeclampsia to address modifiable risk factors and counsel mothers on persisting risk factors for recurrence will mitigate the risk of recurrence of LBW.
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.
Integrated KT 2.0: The next generation of teamwork
Authors: Fransoo Randy , Sibley Kathryn
Published: April 2017

ABSTRACTObjectiveThe goal of this study was to engage members of a long-standing Integrated KT collaborative in a process to revitalize team goals and processes. “The Need to Know” Team started in 2001 in Manitoba, to engage knowledge users in the conceptualization, creation, and application of population health research. The team has garnered numerous national awards and citations for its approach.

We conducted a survey of team members (N=27), representing all Health Authorities in the province, plus provincial government reps. Questions included frequency of data use and medium (print vs online), how well the team is meeting is goals, open-ended questions about how the team could be more useful to members and their organizations, and their top 3 suggestions to ensure the ongoing success and increase the impact of the team.MethodTwenty-two of 27 members responded to the survey (81.5%) within one week. Responses to questions about how well the team is meeting its existing goals revealed high scores – especially among those goals which lay entirely within the scope of the team’s control (91% extremely or moderately well). Objectives relating to larger-scale impacts on the healthcare system had lower ratings (72% extremely or moderately well), as might have been expected. ResultsOver 75% reported that the team’s work had impacted their organization’s work moderately or a lot. The most commonly cited examples were that the work of the team increased capacity for data analysis/interpretation and research (18%), provided results that were used in staff and/or board meetings (15%), influenced decisions and the discussions leading up to them (15%), influenced the development and use of region-relevant quality indicators (13%), and were used in the ongoing education of health professionals (13%). The open-ended questions regarding optimal next steps solicited a variety of suggestions ranging from developing even richer relationships with existing partners, to including a wider variety of partner organizations (e.g. Indigenous groups); aligning team priorities with those of the provincial government (where feasible); and moving to occasional electronic meetings for appropriate content issues and to increase impact in partner organizations.

ConclusionThis exercise in reflection and strategic planning has shown that the team has done an exceptional job in achieving its initial goals, most of which remain relevant, but some of which need revision. More importantly, several creative approaches have been suggested which may increase future impact and enhance both the breadth and depth of the team’s reach.
Considerations of response bias and value in linking an existing longitudinal cohort study with national health record data
Authors: Allen Joanne , Towers Andy , Alpass Fiona , Stephens Christine
Published: April 2017

ABSTRACTObjectiveLongitudinal cohort studies remain important sources of information in health and epidemiological research and represent a significant investment of resources. The maintenance of these cohorts over time and the representativeness of retained participants are important considerations for researchers. For those weighting the benefits of augmenting a longitudinal cohort study with data linkage to national health records, the potential for bias in consent and match rates and the utility of the newly obtained data are also key considerations. This study presents an analysis of bias associated with consent to participate and record matching in an established longitudinal cohort of older persons. We present the unique outcomes generated from this national health record data linkage project and the opportunities such variables present for longitudinal cohort studies.ApproachThe New Zealand Health, Work and Retirement study is a biennial survey of persons aged 55-85 which commenced in 2006. Over the past decade, additional cohorts have been recruited to the study, with n = 9003 older New Zealand residents participating to the year 2015. In 2013 the study began an approach to active survey participants for consent to link their longitudinal survey data to national health record data held by the New Zealand Health Information Service, including data related to hospital events, the New Zealand Cancer Registry, pharmaceutical data and mental health data. We compare self-reported longitudinal health trends associated with consent/declination to participate as well as for record match success and failure. Key outcomes derived from these national datasets for the purposes of the Health, Work and Retirement Study are described.ResultsConsent (62.5%) and declination (8.9%) to participate in the data linkage project are described in terms of the corresponding longitudinal self-reported health and socio-demographic trends for these groups. Successful and unsuccessful matches of participants to national health record data are also described. The calculation of outcomes from each of the linked datasets obtained and their potential utility in building upon existing longitudinal cohort data are also presented.ConclusionsNational health record data linkage presents a potentially valuable source of data to supplement and replicate findings related to health outcomes and expenditure derived from longitudinal cohort surveys. The challenges and successes of the New Zealand Health, Work and Retirement survey data linkage project touch upon considerations pertinent to evaluating the value of augmenting existing and ongoing longitudinal survey cohort for other researchers.
Reliability of Geneological Cemetery Records in Ascertaining Vital Status in an Historical Cohort Study
Authors: Gwini Stella , MacFarlane Ewan , Benke Geza , Sim Malcolm
Published: April 2017

ABSTRACTBackground Ascertainment of vital status is a particular challenge in studies of historical cohorts, particularly when the time last known to be alive precedes available and linkable death databases. In Australia, vital status is typically ascertained by linkage to the National Death Index (NDI) which contains detailed information on all deaths occurring after 1 January 1980. While the Australian National Death registry has electronic records dating back to the 18th century searching for deaths prior to this date can only be undertaken on an individual basis by requesting specific death certificates from state/territory registrars of births, deaths and marriages, which is unfeasible for a whole cohort. In the past decade, a number of publically accessible online genealogical databases containing either details of burials/cremations or tombstone inscriptions have become available. While genealogical cemetery records are a potential source of mortality ascertainment, their reliability for this purpose is unknown. We used the Australian NDI, as a gold standard, to assess the reliability of electronic cemetery records in ascertaining vital status in a cohort study.

MethodsIn a historical cohort of former workers employed at a Tasmanian cement factory from 1936, Tasmanian electronic cemetery and tombstone inscription databases were checked for ‘fact of death’ for workers last known to be alive after 01 January 1980 (N=867, 31% of the cohort). The same cohort was also linked to the NDI. Sensitivity, specificity, positive and negative predictive values (PPV and NPV) of cemetery records were calculated.

ResultsThe NDI identified 78 deaths (9%) while we identified 50 deaths (6%) through cemetery record checks. The sensitivity of cemetery matching was low (53.8%; 95% CI 42.2-65.2) while specificity was 99.0% (95% CI 98.0-99.6). Positive and negative predictive values were also good, 84.0% (95% CI 70.9-92.8) and 95.6% (95% CI 94.0-96.9), respectively.

ConclusionsThe results show that deaths identified from electronic cemetery records can be reliable (i.e. high PPV), even though this method correctly identified about half of deaths (i.e. low sensitivity). This methodology can be useful when sources of vital status ascertainment are limited.
CHERISH: Understanding Suicide Clusters tHrough ExploRIng Self Harm behaviours
Authors: Delpozo-Banos Marcos , Hawton Keith , Gunnel David , Lloyd Keith , Scourfield Jonathan , Dennis Michael , John Ann
Published: April 2017

ABSTRACTObjectivesIn Wales suicide accounts for 20% of deaths among men aged 15-24 years and almost 10% of deaths among women of that age. Up to 2% of suicides in young people are thought to occur in clusters. Yet, our understanding of the social and psychological determinants of suicide clusters is limited, with none of the cross-discipline theories proposed having been tested via in-depth research on an actual cluster. This HCRW funded mixed methods study had qualitative and quantitative data linkage work packages to explore here the factors that trigger a suicide cluster, cause it to continue and then eventually subside.

ApproachThe data of 1866 individuals’ who attended the Princes of Wales Hospital emergency department (ED) with self harm between 1st January 2006 and 31st December 2013 was anonymously linked within the Secure Anonymised Information Linkage (SAIL) databank. We had a matching rate of 99.7. We performed both time-trend analysis on this data around the apparant suicide cluster in 2007-08, and a comparison across three defined populations: those attending ED at the time of the cluster; those attending during the same period, one year before; and those attending one year after.

ResultsWe are able to present the characteristics of those who attend ED during a cluster with self harm compared to those who attend at other times and their long term outcomes.

ConclusionTo inform the development of appropriate policy to respond to suicide clusters at an early stage.
The effect of ultraviolet radiation on birth weights and gestational length in a scottish birth cohort
Authors: Clemens Tom , Lauren Megaw , Dibben Chris , Stock Sarah , Weller Richard
Published: April 2017

ABSTRACT

ObjectivesOutcomes at birth such as prematurity and birthweight are important determinants of later life health and social outcomes including education attainment, cognitive and behavioural development and a large number of health outcomes. Recently, it has become clear that characteristics of the physical environment, including air pollution, plays an important role in mediating outcomes of pregnancy. Vitamin D deficiency from lack of sunlight has also shown associations with pregnancy outcomes but this has not been replicated in intervention studies of vitamin D supplementation. Recent clinical evidence has pointed to a sunlight pathway that is independent of vitamin D, which instead mediates blood pressure through the production of Nitric Oxides in the skin from exposure to the UVA component of sunlight. This pathway might explain the lack of association with vitamin D supplementation and provides a plausible pathway for direct effects of sunlight exposure for pregnancy outcomes. In this study, we examined the effect of exposure to sunlight during pregnancy hypothesising that higher levels of exposure might reduce risks of premature birth and low birthweight.

ApproachWe used routinely collected maternity health data covering all births in Scotland in the period 2000-2010 (~ 550000 births). Using the mothers residential postcode at birth we attached estimates of UV exposure for each trimester of pregnancy based on a combination of MET office spatially detailed sun hours data and satellite derived solar insolation data. We modelled the effect of UV exposure for birthweight and risk of preterm birth with adjustment for confounding variables including smoking, parity and maternal stature. Sensitivity analysis using sibling pairs with discordant UV exposures was also explored to test the robustness of the findings to residual confounding.

ResultsResults are not available at time of writing but will be available for the conference presentation and will discuss the effects of UV exposure for both the risk of premature birth and low birthweight.

ConclusionsTogether with clinical evidence, findings from this study may serve to highlight a possible need to revisit public health advice regarding reducing UV exposure during pregnancy and may provide evidence for possible interventions including sun lamp therapy for pregnant mothers.
Defining ‘sensitive’ health status: a systematic approach using health code terminologies.
Authors: Boyd Andy , Cornish Rosie , Provis Jennifer , Teyhan Alison , Macleod John
Published: April 2017

ABSTRACT

Objectives“Clearly, details about an individual’s mental health, for example, are generally much more ‘sensitive’ than whether they have a broken leg.”

UK Information Commissioners Office

There is a perceived wisdom – based on issues such as social taboos, religious sensitivities, or financial implications linked to health status – that some health data is more sensitive than others. This distinction is present in many of the regulatory interpretations of privacy law (e.g. the UK Information Commissioners Office interpretation of the EU Data Directive, illustrated above), and is factored into the thinking of ethics and other regulatory decision-making committees. However, these particularly ‘sensitive’ data are defined at a regulatory level in broad terms (e.g. mental health), yet need implementing by researchers in precise terms. In 2013 our longitudinal research study was given approval by the UK Secretary of State for Health to access identifiable patient health records with the exception of those relating to mental health, sexual health or termination of pregnancy. Our objective therefore was to develop a generalisable informatics approach which enabled us to filter out sensitive records at the point of extraction.

ApproachWe developed a methodology based on the Cochrane systematic review approach: firstly using internationally recognised definitions of health concepts and reference texts (e.g. British National Formulary drug manual) we identified keywords associated with sensitive health events (including symptom and diagnostic terms, drug and appliance codes, community and secondary care references); secondly, through data-mining code terminologies – using both code terms and information embedded within the structure of the schema itself - we identified code values relating to these terms; thirdly we minimised our results through filtering out spurious results via manual review; finally, the resulting code lists were then crossed-referenced with other terminologies to ensure interoperability.

ResultsWe produced separate definitions of mental health and sexual health events initially using Read codes. Using NHS cross-reference tables we were able to translate Read observation and diagnostic codes to the SNOMED CT vocabulary, but were unable to translate Read drug codes into the SNOMED/DM+D vocabulary.

ConclusionWe have demonstrated a systematic and partially interoperable approach to defining ‘sensitive’ health information. However, any such exercise is likely to include decisions which will be open to interpretation and open to change over time. As such, the application of this technique should be embedded within an appropriate governance framework which can accommodate misclassification while minimising potential patient harm.