Data Linkage Service Research Articles

Collecting and incorporating feedback through user research to provide the right information on data linkage processes needed to conduct research.

ObjectiveData linkage is increasingly used to generate research-ready datasets to help inform decision makers. Although use of linked data is increasing and accepted as an efficient way to generate new insights, linkage methods and error can have a significant impact on the subsequent analysis and interpretation of the results. Current linkage services overcome this by spending time explaining the linkage to the user. However, as the service demand increases and a generalised approach adopted, ensuring the information is available and understood is a growing challenge. Providing and presenting the information in an accessible way has therefore become a new problem for the data linkage experts. ApproachUser researchers are working with groups of non-linkage experts using linked data to collate and understand feedback on: what information researchers expect. the information researchers find useful. how researchers interpret and use the linkage information to inform their analysis. ResultsFindings to date will be presented by exploring how information should be presented and what information researchers are able to interpret and use as part of their analysis. Conclusions/ImpactFindings will provide guidance as to the information which should be included with a linkage output and the structure most accessible to the research community using linked data. Therefore, the research will help shape how the data linkage service is structured in the future by ensuring researchers can access information they require to interpret linked data and therefore use it appropriately. Ultimately, the feedback will help deliver data linkage services on a large scale.

Blockchain Native Data Linkage

Data providers holding sensitive medical data often need to exchange data pertaining to patients for whom they hold particular data. This involves requesting information from other providers to augment the data they hold. However, revealing the superset of identifiers for which a provider requires information can, in itself, leak sensitive private data. Data linkage services exist to facilitate the exchange of anonymized identifiers between data providers. Reliance on third parties to provide these services still raises issues around the trust, privacy and security of such implementations. The rise and use of blockchain and distributed ledger technologies over the last decade has, alongside innovation and disruption in the financial sphere, also brought to the fore and refined the use of associated privacy-preserving cryptographic protocols and techniques. These techniques are now being adopted and used in fields removed from the original financial use cases. In this paper we present a combination of a blockchain-native auditing and trust-enabling environment alongside a query exchange protocol. This allows the exchange of sets of patient identifiers between data providers in such a way that only identifiers lying in the intersection of sets of identifiers are revealed and shared, allowing further secure and privacy-preserving exchange of medical information to be carried out between the two parties. We present the design and implementation of a system demonstrating the effectiveness of these exchange protocols giving a reference architecture for the implementation of such a system.

Evaluating the provision of Further Enabling Care at Home (FECH+) for informal caregivers of older adults discharged home from hospital: protocol for a multicentre randomised controlled trial

IntroductionThere are personal and societal benefits from caregiving; however, caregiving can jeopardise caregivers’ health. The Further Enabling Care at Home (FECH+) programme provides structured nurse support, through telephone outreach, to...

Congenital anomalies in children with postneonatally acquired cerebral palsy: an international data linkage study.

To describe the major congenital anomalies present in children with postneonatally acquired cerebral palsy (CP), and to compare clinical outcomes and cause of postneonatally acquired CP between children with and without anomalies. Data were linked between total population CP and congenital anomaly registers in five European and three Australian regions for children born 1991 to 2009 (n=468 children with postneonatally acquired CP; 255 males, 213 females). Data were pooled and children classified into mutually exclusive categories based on type of congenital anomaly. The proportion of children with congenital anomalies was calculated. Clinical outcomes and cause of postneonatally acquired CP were compared between children with and without anomalies. Major congenital anomalies were reported in 25.6% (95% confidence interval [CI] 21.7-29.9) of children with postneonatally acquired CP. Cardiac anomalies, often severe, were common and present in 14.5% of children with postneonatally acquired CP. Clinical outcomes were not more severe in children with congenital anomalies than those without anomalies. Cause of postneonatally acquired CP differed with the presence of congenital anomalies, with cerebrovascular accidents predominating in the anomaly group. Congenital anomalies were likely associated with cause of postneonatally acquired CP in 77% of children with anomalies. In this large, international study of children with postneonatally acquired CP, congenital anomalies (particularly cardiac anomalies) were common. Future research should determine specific causal pathways to postneonatally acquired CP that include congenital anomalies to identify opportunities for prevention. One-quarter of children with postneonatally acquired cerebral palsy (CP) have a major congenital anomaly. Cardiac anomalies, often severe, are the most common anomalies. Causes of postneonatally acquired CP differ between children with and without congenital anomalies.

Life Expectancy, Mortality Risks and Cause of Death in Patients with Serious Mental Illness: A Comparison between 2008-2012 and 2013-2017

Background: People with serious mental illness have a significantly shorter life expectancy than the general population. This study investigates whether the mortality rate in this group has changed over the last decade. Method: Using Clinical Record Interactive Search (CRIS) software, we extracted data from a large electronic database of patients in South East London. All patients who had received a diagnosis of schizophrenia, schizoaffective disorder or bipolar affective disorder from 2008-2012 and/or 2013-2017 were included. Estimates of life expectancy at birth, standardized mortality ratios and causes of death were obtained for each cohort according to diagnosis and gender. Comparisons were made between cohorts and with the general population using data obtained from UK Office of National Statistics. Findings: 26,005 patients with serious mental illness were included. In men, life expectancy was greater in 2013-2017 (64.9 years; 95% CI: 63.6-66.3) than in 2008-2012 (63.2 years; 95% CI: 61.5-64.9). Similarly, in women, life expectancy was greater in 2013-2017 (69.1 years; 95% CI: 67.5-70.7) than in 2008-2012 (68.1 years; 95% CI: 66.2-69.9). The difference with general population life expectancy fell by 0.9 years between cohorts in men, and by 0.5 years in women. In women with SMI, cancer was the leading cause of death in 2013-2017, whereas the leading cause in 2008-2012 was cardiovascular diseases. In men with SMI there were more deaths due to cancer in 2013-2017 than in 2008-2012. Cancer overtook cardiovascular disease as the leading cause of death in women. Interpretations: Relative to the general population, life expectancy for people with serious mental illness it is still much worse though appears to be improving. The increased cancer-related mortality in these patients suggests that physical health monitoring should consider including cancer as well as cardiovascular and metabolic disease. Funding Statement: EC is funded by a National Institute for Health Research Doctoral Research Fellowship (NIHR300273). CK was funded by Taipei City Government. RP is funded by National Institute for Health Research. Academy of Medical Sciences, The Wellcome Trust, MRC, British Heart Foundation, Arthritis Research UK, the Royal College of Physicians and Diabetes UK. Declaration of Interests: All authors have completed the ICMJE uniform disclosure form and declared no interest of conflicts. Ethics Approval Statement: The SLaM BRC Case Register and CRIS have received ethical approval as an anonymised data set for secondary analyses from the Oxfordshire Research Ethics Committee C (18/SC/0372). The Clinical Data Linkage Service was used for data protection, linkage and extraction.

Population Data Centre Profile - The Western Australian Data Linkage Branch.

Established in 1995, the Western Australian Data Linkage Branch (DLB) is Australia’s longest running data linkage agency. The Western Australian Data Linkage System (WADLS) employs an enduring linkage model spanning over 60 data collections supported by internally developed and supported software and IT infrastructure. DLB has delivered, and continues to deliver, a range of significant data linkage innovations, many of which have been adopted elsewhere. A current restructure within the Western Australian Department of Health (which we will refer to as the Department of Health) will provide an improved funding model geared toward addressing issues with staff retention, capacity and customer service, as well as fostering improvements to data management, governance and availability. Research using linked data provided by DLB has been used in over 800 projects resulting in over 2350 publications and outcomes for policy development, service delivery and public health. Demand continues to grow for data linkage services and with the Department of Health’s bolstered commitment to resourcing, DLB looks forward to a future for data linkage in Western Australia that is sustainable, high quality, efficient, and safe.

Tasmanian Data Linkage Unit: Supporting innovative research, planning and policy formulation in Australia through the provision of high-quality linked-data services.

As a member of the Population Health Research Network Australia, being an Australian collaboration established to support the use of linked data for research and other purposes, the Tasmanian Data Linkage Unit [TDLU) provides linked-data services in Australia’s smallest state, and as part of the Menzies Institute for Medical Research at the state’s only University, the University of Tasmania. The TDLU works in close collaboration with the Tasmanian Government Department of Health and other key stakeholders both in Tasmania and Australia representing government, education, research, and the community sector. The TDLU is one of the newest data linkage services in Australia, and the smallest node of the PHRN having operated for almost nine years by less than three full time equivalent staff. However, despite its size and relative maturity as a provider of linked-data services, the TDLU continues to grow the number of datasets linked on a routine and ad-hoc basis, the number of projects completed, the size of its Master Linkage Map and number of ‘keys’ stored in this Map. The TDLU places high-emphasis on security, privacy preservation, innovation, quality assurance, stakeholder engagement and providing responsive and exemplary services to users of linked-data.

Using data linkage innovation and collaboration to create a cross-sectoral data repository for Western Australia

Background/rationaleThe Western Australian (WA) government and the Centre for Data Linkage (CDL) at Curtin University are creating a large, de-identified researchable database – the Social Investment Data Resource (SIDR) – to support a key government initiative called Target 120 (T120). T120 delivers targeted early interventions to young offenders and their families to reduce the likelihood of re-offending.
 Main AimThe SIDR brings together de-identified data from across government to be used for actuarial assessment and social investment analytics to assess long-term costs and benefits of T120 interventions.
 MethodsSIDR adopts a distributed linkage model where linkage workload is shared between the Department of Health Data Linkage Branch who curate WA Data Linkage System (WADLS) and the CDL. Design elements of the model included a common spine (embedded into the infrastructure of both groups), methods for leveraging quality from WADLS, and inclusion of family relationships data from the WA Family Connections database. The linkage model uses a combination of traditional and privacy-preserving record linkage (PPRL) methods. PPRL does not require release of personal identifiers; instead, data is irreversibly hashed prior to release for probabilistic linkage.
 The resultant SIDR repository has been designed to be securely and strictly managed. Access is by authorised, approved users only.
 ResultsUse of a distributed linkage model, coupled with traditional and PPRL methods, is an innovative yet pragmatic way of delivering data linkage services to a large, cross-sectoral research project. PPRL methods enable inclusion of otherwise excluded datasets in the project. Sharing of workload harnesses linkage capacity and capabilities across the state. The SIDR includes health data, education records, justice, child protection, disability and housing data.
 ConclusionSIDR provides a resource for whole-of-government policy development, service evaluation, academic research and social investment analytics for T120 and beyond. The SIDR distributed linkage model has potential for adaptation and use elsewhere.

The Maudsley Biomedical Research Centre (BRC) data linkage service user and carer advisory group: creating and sustaining a successful patient and public involvement group to guide research in a complex area

BackgroundPatient and Public Involvement (PPI) in health and social care research has been shown to improve the quality and relevance of research. PPI in data linkage research is important in ensuring the legitimacy of future health informatics initiatives, but remains sparse and under-developed. This article describes the setting up and evaluation of a service user and carer advisory group with the aim of providing feedback and advice to researchers developing or making use of database linkages in the field of mental health.AimThe aim of this study is to describe the creation and formative evaluation of the service user and carer advisory group after a trial period of 12 months.MethodSix individuals were recruited to the group all of whom had personal experience of mental illness. A formative evaluation was conducted after a trial period of 12 months.ResultsEvaluation revealed that the group succeeded in promoting dialogue between service users/carers and researchers. Factors that contributed to the success of the group’s first year included the opportunity it provided for researchers to involve service users and carers in their projects, the training provided to group members, and the openness of researchers to receiving feedback from the group.ConclusionThe group encourages the incorporation of PPI in data linkage research which helps to ensure the legitimacy of data linkage practices and governance systems whilst also improving the quality and relevance of the research being conducted using linked data.

Evolving population data linkage services to transform large-scale biobanking services

IntroductionMany population data linkage centres have been established to provide a mechanism for making linked administrative data available to approved third parties within robust governance frameworks. While current models support a wide variety of research, modifications are required for linked administrative data to better position biobanking research infrastructure.
 Objectives and ApproachWe have sought to reconfigure population data linkage services to enhance the value of a newly established state-of-the art population and disease biobank embedded within a state based pathology network, equipped with robotic technology, with the capacity to store and process more than 3 million samples from participants consenting to data linkage and future unspecified research.
 ResultsThree data service streams have been developed: longitudinal data linkage, cohort management and targeted recruitment. Traditional infrastructure for population data linkage will support the longitudinal data linkage stream, making data and biospecimens available for research, without direct patient identifiers. Technical and governance changes are necessary to enable the rapid release of contemporaneous patient and health system data for cohort management and recruitment purposes. The cohort management stream seeks to significantly reduce the manual follow-up of administrative data. The newly developed targeted recruitment service will leverage on the jurisdictional data holdings and structure of the health system and pathology network, to identify optimal sites and service providers for patient recruitment at scale, in an expedited manner.
 Conclusion/ImplicationsModest changes to population data infrastructure have significant potential to enhance biobank research infrastructure. By fast tracking biospecimen accrual for diseases of population subgroups of strategic importance, this new service is intended to promote biobank viability, accelerate the pace of clinical trials recruitment and improve patient access to trials.

Data quality and 30-day survival for out-of-hospital cardiac arrest in the UK out-of-hospital cardiac arrest registry: a data linkage study

ObjectivesThe Out-of-Hospital Cardiac Arrest Outcomes (OHCAO) project aims to understand the epidemiology and outcomes of out-of-hospital cardiac arrest (OHCA) across the UK. This data linkage study is a subproject of...

Human papillomavirus infection and intrauterine growth restriction: a data-linkage study

Objective: Using unbiased population data, to examine whether having a positive Pap smear, and thus a high probability of Human Papilloma Virus (HPV) infection, is a significant risk factor for intrauterine growth restriction (IUGR) in a subsequent pregnancy.Study design and methods: Two independent population-based databases, namely the South Australian Perinatal Statistics Collection and the South Australian Cervical Screening Database, were deidentified and linked by the SANT Datalinkage Service. Analyses were performed on cases where Pap smear screening data was available for up to 2 years prior to a singleton live birth. Population characteristics and pregnancy related data were compared statistically by normal birth weight versus IUGR (10th percentile – known as small for gestational age (SGA), small for gestational age) and (3rd percentile birth weight – known as VLBW, very low birth weight). The association between cervical screening results and IUGR was assessed using generalized linear log binomial regression models.Results: A total of 31,827 women met the criteria. Of these, 1311 women (4.1%) had a positive Pap smear within 2 years of the current pregnancy. Those having a positive Pap smear were more likely to have a baby with IUGR than those with negative smear results. For SGA, 5.8% babies were from mothers with positive Pap smears compared to 4.0% with negative smears indicating a 40% higher risk of having an SGA baby (95%CI 20–70%) among women with positive Pap smears. For VLBW, 7.6% mothers had positive Pap smears compared with 4.0% with negative smears (p < .001), which reflects a 90% increased risk (95%CI 40–150%). These associations reduced to 20% (95%CI 1–40%) and 50% (95%CI 10–100%) for SGA and VLBW, respectively, after adjusting for all other significant covariates including maternal age, ethnicity, marital status, occupation, smoking, pregnancy history, and maternal health during pregnancy.Conclusions: Mothers with a positive Pap smear have an increased risk of IUGR, especially for VLBW, which is independent of other risk factors. The results confirm previous findings in a small study and emphasise the need to consider the risks of both cancer and IUGR in all HPV vaccination programs.

The DASSL or Data Access, Storage, Sharing and Linkage Model & Proposals for an Enabling Data Environment for Health and Related Research in Ireland

ABSTRACTObjectivesThis project set out 1)to examine the barriers and facilitators which impact on researchers’ ability to access, share and link data and thus carry out health and related research in Ireland and 2)to explore possible solutions.&#x0D; ApproachInterviews were conducted with individuals involved in the collection, use, storage, sharing and linkage of data in Ireland. Data-related needs, practices and attitudes were explored, as were respondents’ views regarding both existing and required infrastructure and services for the safe sharing and linkage of data. Ongoing discussions with key stakeholders, visits to centres of excellence abroad and a review of the international literature informed results.&#x0D; ResultsBased on the work carried out a model for safe access, sharing and linkage of data within the Irish context was developed – the DASSL or data access, storage, sharing and linkage model. The model comprises seven elements – five related to infrastructure and services [a health research data hub, safe haven, trusted third party and data linkage service, output checking and disclosure control and a research support unit] required for safeguarding data, and two related to the broad legislative and socio-cultural context needed to facilitate implementation of the model i.e. governance and public engagement. It is suggested that a research data trust [RDT] would be established to house the DASSL elements and to provide the institutional and technical environment to respond to the growing data-related needs within the Irish health research environment and the broader data ecosystem.&#x0D; ConclusionThe proposals put forward for creating a safe environment for access, sharing and linkage of research and related data need to be considered by all key stakeholders. It is suggested that a Data to Benefits Committee be established to drive strategic discussions and action towards the implementation of the DASSL model elements. Implementation of the DASSL model will allow for safe usage of currently under-exploited data which can help inform health and wellbeing but also serve national economic and social agendas.&#x0D;

Supporting clinical trials through healthcare informatics

Administration of trials involving large numbers of participants, coordinating multi-centred sites or drug management can all result in major logistical challenges for any trial. The enormity of these challenges can be drastically reduced through the adoption of healthcare informatics. ECLS (Early Cancer detection test - Lung cancer Scotland) is a high impact study with the aim of detecting often-deadly lung cancer at an earlier and more treatable stage. This project, a collaboration between researchers at the Universities of Dundee, Glasgow and Nottingham, NHS Scotland, the Tayside Clinical Trials Unit (TCTU) and supported by the Health Informatics Services Centre (HIC), provides a prime example of how healthcare informatics can be successfully applied through the full life cycle of a trial: • A web based Patient Recruitment system is being utilised to invite ~50,000 potential participants to take part in this study. This provides the facility to track participant progress, generate online reports and record participant appointments. • A Letter App supports the generation of letters as required by the study (e.g. appointment/result letters). • The Tayside Randomisation System (TRuST) balances the randomisation allocation for this study based on a minimisation with stratification algorithm. TRuST can also be utilised for allocation clustering preventing potential contamination and drug management offering full accountability. • On completion of recruitment the study will employ the services of the HIC Data Linkage Service to follow up participants and link to their routinely collected electronic health records. • HIC Services further supports clinical trials through the creation of study websites and data collection tools.

Alcohol-related mortality following self-harm: a multicentre cohort study.

ObjectivesTo assess alcohol-related premature death in people who self-harm compared to the general population, including variation by socioeconomic deprivation.DesignA retrospective longitudinal cohort analysis from the Multicentre Study of self-harm in England, 1 January 2000 to 31 December 2010, with cause-specific mortality follow-up through to 31 December 2012.SettingSix emergency departments in Oxford, Manchester and Derby.ParticipantsAll individuals aged 15 years or more who presented with self-harm (n = 39,014) to general hospital emergency departments, together with follow-up mortality information from the Data Linkage Service of the Health and Social Care Information Centre.Main outcome measuresStandardised mortality ratios (observed/expected number of deaths: SMRs) and mean number of years of life lost (YLL) were estimated for alcohol-related mortality. Patients’ characteristics and clinical management following self-harm were also examined.ResultsAfter 7.5 years’ (median) follow-up, 2695 individuals (6.9%) had died, significantly more males (9.5%) than females (5.0%), including 307 (11.4%) from alcohol-related causes. Alcohol-related death was more frequent than expected in both males (SMR 8.5, 95% CI 7.3 to 9.8) and females (11.6, 9.8 to 13.7), equating to 33.7 YLL (95% CI 32.4 to 35.0) in males and 38.1 YLL (36.6 to 39.6) in females. It was not associated with area-level socioeconomic deprivation. Alcohol-related death was associated with unemployed/sick/disabled status, alcohol use during self-harm, referral to drug/alcohol services and lack of psychosocial assessment following self-harm.ConclusionsHospital-presenting self-harm patients should receive assessment following self-ham according to national guidance to enable early identification and treatment of alcohol problems.

Integrating Spatial Data Linkage and Analysis Services in a Geoportal for China Urban Research

AbstractMany geoportals are now evolving into online analytical environments, where large amounts of data and various analysis methods are integrated. These spatiotemporal data are often distributed in different databases and exist in heterogeneous forms, even when they refer to the same geospatial entities. Besides, existing open standards lack sufficient expression of the attribute semantics. Client applications or other services thus have to deal with unrelated preprocessing tasks, such as data transformation and attribute annotation, leading to potential inconsistencies. Furthermore, to build informative interfaces that guide users to quickly understand the analysis methods, an analysis service needs to explicitly model the method parameters, which are often interrelated and have rich auxiliary information. This work presents the design of the spatial data linkage and analysis services in a geoportal for China urban research. The spatial data linkage service aggregates multisource heterogeneous data into linked layers with flexible attribute mapping, providing client applications and services with a unified access as if querying a big table. The spatial analysis service incorporates parameter hierarchy and grouping by extending the standard WPS service, and data‐dependent validation in computation components. This platform can help researchers efficiently explore and analyze spatiotemporal data online.

Calcium supplementation and the risks of atherosclerotic vascular disease in older women: Results of a 5-year RCT and a 4.5-year follow-up

Concern has been expressed that calcium supplementation, a key intervention for preventing osteoporotic fracture in older women, may increase the risk of atherosclerotic vascular disease. To evaluate the risk further, an examination of complete verified atherosclerotic vascular hospitalization and mortality data from a 5-year randomized, controlled trial (RCT) of calcium carbonate and 4.5 years of posttrial follow-up was undertaken. This study used data from a published 5-year randomized, double-blinded, placebo-controlled trial [Calcium Intake Fracture Outcome Study (CAIFOS)]. The participants were 1460 women aged 75.1 ± 2.7 years at baseline (1998) recruited from the general population and randomized to receive 1200 mg of calcium carbonate daily or an identical placebo. All hospital admission and deaths during the 5-year study and the 4.5-year follow-up were derived from the Western Australian Data Linkage Service (WADLS). Hazard ratios (HRs) for the combined endpoint of atherosclerotic vascular mortality or first hospitalization were calculated using prespecified intention-to-treat and per-protocol models. The intervention group that received calcium supplementation did not have a higher risk of death or first-time hospitalization from atherosclerotic vascular disease in either the 5-year RCT [multivariate-adjusted HR = 0.938, 95% confidence interval (CI) 0.690-1.275] or during the 9.5 years of observational study (multivariate-adjusted HR = 0.919, 95% CI 0.737-1.146). Further analysis suggested that calcium supplementation may reduce the risk of hospitalization and mortality in patients with preexisting atherosclerotic cardiovascular disease. This trial provides compelling evidence that calcium supplementation of 1200 mg daily does not significantly increase the risk of atherosclerotic vascular disease in elderly women.

Five‐year outcome in COPD patients after their first episode of acute exacerbation treated with non‐invasive ventilation

Little is known about long-term survival of patients surviving the first episode of type II respiratory failure requiring non-invasive ventilation (NIV). We aimed to determine the 1-, 2- and 5-year survival, cause of death and potential prognostic indicators in this patient cohort. We retrospectively identified 100 sequential COPD patients (mean age 70, mean FEV(1) 37% predicted) treated with NIV for the first time. Mortality and data on hospital morbidity and potential prognostic factors were collected from patient records and a State Health Data Linkage Service. Survival at 1, 2 and 5 years was 72%, 52% and 26%, respectively. Respiratory failure secondary to COPD was the commonest cause of death (56.8%), followed by cardiovascular events (25.7%). Readmission rate at 1 year was 60% for those who survived 2 years or more and 52% for those deceased within 2 years. Recurrent respiratory failure requiring NIV was observed in 31% of the cohort. Only advance age (P = 0.04), BMI ( P = 0.014) and prior domiciliary oxygen use (P = 0.03) correlated with death within 5 years. Severity of respiratory failure did not correlate with mortality. The 2- and 5-year mortality rates for patients with COPD surviving their first episode of respiratory failure requiring NIV are high. Physiological measures of the severity of respiratory failure at presentation do not predict subsequent survival and nor does the time interval between first and second admissions requiring NIV. Age, BMI and prior need for domiciliary oxygen are the main predictors of mortality at 5 years.