Maternal health, pregnancy and birth outcomes for women involved in care proceedings in Wales: a linked data study.

BACKGROUND: Under the Children Act 1989, local authorities in Wales, UK, can issue care proceedings if they are concerned about the welfare of a child, which can lead to removal of a child from parents. For mothers at risk of child removal, timely intervention during pregnancy may avert the need for this and improve maternal/fetal health; however, little is known about this specific population during the antenatal period. The study examined maternity characteristics of mothers whose infants were subject to care proceedings, with the aim of informing preventative interventions targeted at high risk mothers. METHODS: Anonymised administrative data from Cafcass Cymru, who provide child-focused advice and support for family court proceedings in Wales, were linked to population-based maternity and health records held within the Secure Anonymised Information Linkage Databank. Linked data were available for 1111 birth mothers of infants involved in care proceedings between 2015 and 2018. Findings were benchmarked with reference to an age-deprivation-matched comparison group (n = 23,414), not subject to care proceedings but accessing maternity services during this period. Demographic characteristics, maternal health, reproductive history, interaction with midwifery services, and pregnancy and birth outcomes were examined. Descriptive and statistical tests of independence were used. RESULTS: Half of the women in the cohort (49.4%) resided in the most deprived areas. They were more likely to be younger at entry to motherhood (63.5% < 21 years-of-age compared to 42.7% in the comparison group), to have mental health (28.6% compared to 8.2%) and substance use issues (10.4% compared to 0.6%) and to smoke (62.7% compared to 24.8%) during pregnancy. The majority first engaged with maternity services within their first trimester of pregnancy (63.5% compared to 84.4%). Babies were more likely to be born preterm (14.2% compared to 6.7%) and, for full-term babies, to have low birthweights (8.0% compared to 2.8%). CONCLUSION: This novel linkage study highlights multiple vulnerabilities experienced by pregnant mothers who have experienced care proceedings concerning an infant. Policy and practice colleagues require a clearer picture of women's needs if child protection and health services are to offer effective services which prevent the need for family court proceedings and infant removal.

Data Resource: population level family justice administrative data with opportunities for data linkage.

INTRODUCTION: Although there has been considerable progress in the use of administrative data for applied health research, the family justice field lags behind. Better use of administrative data are essential to enhance understanding of how the family justice system is working, as well as the characteristics of, and outcomes for, children and families. The Family Justice Data Partnership (FJDP) supports this aim through analyses of core family justice and linked datasets in the SAIL Databank (Secure Anonymised Information Linkage). Cafcass Cymru provide expert advice for children involved in family court proceedings in Wales, ensuring decisions are made in the best interests of the child. We provide an overview of Cafcass Cymru data. We also describe and illustrate linkage to administrative datasets within SAIL. METHODS: Cafcass Cymru data was transferred to SAIL using a standardised approach to provide de-identified data with Anonymised Linking Fields (ALF) for successfully matched records. Three cohorts were created: all individuals involved in family court applications; all individuals with an ALF allowing subsequent health data linkage; and all individuals with a Residential Anonymised Linking Field (RALF) enabling area-level deprivation analysis. RESULTS: Cafcass Cymru application data are available for child protection matters (public law, range 2011-2019, n=12,745), and child arrangement disputes (private law, range 2005-2019, n=52,023). An 80% data linkage match rate was achieved. 40% had hospital admissions within two years pre or post application; 54% had emergency department attendances and 61% had outpatient appointments. Individuals were more likely to reside in deprived areas regardless of law type. CONCLUSION: Cafcass Cymru data can be accessed through the SAIL Databank. The FJDP will continue to enhance research opportunities for all to better understand the family justice system, and outcomes for those involved, such as health and wellbeing for children and family members.

Exploring barriers and solutions in advancing cross-centre population data science.

INTRODUCTION: It is widely acknowledged that population health and administrative data, especially when linked at the individual level, hold great value for research. Cross-centre working between data centres providing access to such data has the potential to further increase this value by effectively expanding the data available for research. However, there is limited published information on how to address the challenges and achieve success. The aim of this paper is to explore perceived barriers and solutions to inform developments in cross-centre working across data centres. METHODS: We carried out a narrative literature review on data sharing and cross centre working. We used a mixed methods approach to assess the opinions of members of the public on cross-centre data sharing, and the views and experiences of among data centre staff connected with the UK Farr Institute for Health Informatics Research. RESULTS: The literature review uncovered a myriad of practical and cultural issues. Our engagement with a public group suggested that cross-centre working involving anonymised data being moved between established centres is considered acceptable. The main themes emerging from discussions with data centre staff were dedicated resourcing, practical issues, information governance and culture. CONCLUSION: In seeking to advance cross-centre working between data centres, we conclude that there is a need for dedicated resourcing, indicators to recognise data reuse, collaboration to solve common issues, and balancing necessary barrier removal with incentivisation. This will require on-going commitment, engagement and an academic culture change.

A Profile of the SAIL Databank on the UK Secure Research Platform.

BACKGROUND: The Secure Anonymised Information Linkage (SAIL) Databank is a national data safe haven of de identified datasets principally about the population of Wales, made available in anonymised form to researchers across the world. It was established to enable the vast arrays of data collected about individuals in the course of health and other public service delivery to be made available to answer important questions that could not otherwise be addressed without prohibitive effort. The SAIL Databank is the bedrock of other funded centres relying on the data for research. APPROACH: SAIL is a data repository surrounded by a suite of physical, technical and procedural control measures embodying a proportionate privacy-by-design governance model, informed by public engagement, to safeguard the data and facilitate data utility. SAIL operates on the UK Secure Research Platform (SeRP), which is a customisable technology and analysis platform. Researchers access anonymised data via this secure research environment, from which results can be released following scrutiny for disclosure risk. SAIL data are being used in multiple research areas to evaluate the impact of health and social exposures and policy interventions. DISCUSSION: Lessons learned and their applications include: managing evolving legislative and regulatory requirements; employing multiple, tiered security mechanisms; working hard to increase analytical capacity efficiency; and developing a multi-faceted programme of public engagement. Further work includes: incorporating new data types; enabling alternative means of data access; and developing further efficiencies across our operations. CONCLUSION: SAIL represents an ongoing programme of work to develop and maintain an extensive, whole population data resource for research. Its privacy-by-design model and UK SeRP technology have received international acclaim, and we continually endeavour to demonstrate trustworthiness to support data provider assurance and public acceptability in data use. We strive for further improvement and continue a mutual learning process with our contemporaries in this rapidly developing field.

Validating the portal population of the United Kingdom Multiple Sclerosis Register.

The UK Multiple Sclerosis Register (UKMSR) is a large cohort study designed to capture 'real world' information about living with multiple sclerosis (MS) in the UK from diverse sources. The primary source of data is directly from people with Multiple Sclerosis (pwMS) captured by longitudinal questionnaires via an internet portal. This population's diagnosis of MS is self-reported and therefore unverified. The second data source is clinical data which is captured from MS Specialist Treatment centres across the UK. This includes a clinically confirmed diagnosis of MS (by Macdonald criteria) for consented patients. A proportion of the internet population have also been consented at their hospital making comparisons possible. This dataset is called the 'linked dataset'. The purpose of this paper is to examine the characteristics of the three datasets: the self-reported portal data, clinical data and linked data, in order to assess the validity of the self-reported portal data. The internet (n = 11,021) and clinical (n = 3,003) populations were studied for key shared characteristics. We found them to be closely matched for mean age at diagnosis (clinical = 37.39, portal = 39.28) and gender ratio (female %, portal = 73.1, clinical = 75.2). The Two Sample Kolmogorov-Smirnov test was for the continuous variables to examine is they were drawn from the same distribution. The null hypothesis was rejected only for age at diagnosis (D = 0.078, p < 0.01). The populations therefore, were drawn from different distributions, as there are more patients with relapsing disease in the clinical cohort. In all other analyses performed, the populations were shown to be drawn from the same distribution. Our analysis has shown that the UKMSR portal population is highly analogous to the entirely clinical (validated) population. This supports the validity of the self-reported diagnosis and therefore that the portal population can be utilised as a viable and valid cohort of people with Multiple Sclerosis for study.

Suicide Information Database-Cymru: a protocol for a population-based, routinely collected data linkage study to explore risks and patterns of healthcare contact prior to suicide to identify opportunities for intervention.

INTRODUCTION: Prevention of suicide is a global public health challenge extending beyond mental health services. Linking routinely collected health and social care system data records for the same individual across different services and over time has enormous potential in suicide research. Most previous research linking suicide mortality data with routinely collected electronic health records involves only one or two domains of healthcare provision such as psychiatric inpatient care. This protocol paper describes the development of a population-based, routinely collected data linkage study: the Suicide Information Database Cymru (SID-Cymru). SID-Cymru aims to contribute to the information available on people who complete suicide. METHODS AND ANALYSIS: SID-Cymru will facilitate a series of electronic case-control studies based in the Secure Anonymised Information Linkage (SAIL) Databank. We have identified 2664 cases of suicide in Wales between 2003 and 2011 from routinely collected mortality data using International Classification of Diseases, Tenth Revision, codes X60-X84 (intentional self-harm) and Y10-Y34 (undetermined intent). Each case will be matched by age and sex to at least five controls. Records will be collated and linked from routinely collected health and social data in Wales for each individual. Conditional logistic regression will be applied to produce crude and confounder (including general practice, socioeconomic status) adjusted ORs. ETHICS AND DISSEMINATION: The SAIL Databank has the required ethical permissions in place to analyse anonymised data. Ethical approval has been granted by the Information Governance Review Panel (IGRP). Findings will be disseminated through peer-reviewed publications, consultations with stakeholders and national/international conference presentations. The improved understanding of the prior health, nature of previous contacts with services and wider social circumstances of those who complete suicide will assist in prevention policy, service organisation and delivery. SID-Cymru is funded through the National Institute for Social Care and Health Research, Welsh Government (RFS-12-25).

Use of a patient linked data warehouse to facilitate diabetes trial recruitment from primary care.

Recruitment into clinical trials from primary care may be difficult. Our aim was to use the Secure Anonymised Information Linkage (SAIL) databank to identify potential participants for two factitious trials. We identified 284 and 711 participants for each study (population=250,086). This method appears promising in identifying trial participants.