Perinatal healthcare for women at risk of children's social care involvement: a qualitative survey of professionals in England.

BACKGROUND: Women with complex health needs are more at risk of having children's social care involvement with their newborns than other mothers. Around the time of pregnancy, there are opportunities for health services to support women with these needs and mitigate the risk of mother-baby separation. Yet little is known about healthcare professionals' experiences of providing this support. METHODS: We administered an online survey to perinatal healthcare professionals across England (n=70 responders), including midwives, obstetricians, perinatal psychologists/psychiatrists and health visitors. We asked about their experiences of providing care for pregnant women with chronic physical conditions, mental health needs, intellectual/developmental disabilities and substance use disorders, who might be at risk of children's social care involvement. We conducted a framework analysis. RESULTS: We constructed five themes from participant data. These include (1) inaccessible healthcare for women with complex needs, (2) the challenges and importance of restoring trust, (3) services focusing on individuals, not families, (4) the necessity and caution around multidisciplinary support and (5) underfunded services inhibiting good practice. CONCLUSIONS: Women who are at risk of children's social care involvement will likely experience perinatal healthcare inequities. Our findings suggest that current perinatal healthcare provision for this population is inadequate and national guidelines need updated to inform support.

Recording and analysing ethnicity in public health research: a bibliographical review and focus group discussions with young migrants and refugees in the UK.

BACKGROUND: The ethnicity data gap hinders public health research from addressing ethnic health inequity in the UK, especially for under-served young, migrant populations. We aimed to review how ethnicity was captured, reported, analysed, and theorised within policy-relevant research. METHODS: For this bibliographical review, we reviewed a selection of the 1% most highly cited population health papers reporting UK ethnicity data in MEDLINE and Web of Science databases between Jan 1, 1946, and July 31, 2022, and extracted how ethnicity was recorded and analysed. We included cross-sectional, longitudinal cohort studies, and randomised trials using only UK populations, which were peer-reviewed, were written in English, and reported ethnicity and any health-related outcomes. We held three focus groups with ten participants aged 18-25 years, from Nigeria, Turkistan, Syria, Yemen, and Iran to help us shape and interpret our findings, and asked "How should ethnicity be asked inclusively, and better recorded?" and "Does ethnicity change over time or context? If so, why?". We consolidated feedback from our focus groups into a co-created poster with recommendations for researchers studying ethnicity and health. Written informed consent was obtained for focus group participation. FINDINGS: Of 44 papers included in the review, 19 (43%) used self-reported ethnicity, but the number of ethnic categories provided varied. Of 27 papers that aggregated ethnicity, 13 (48%) provided justification. Only eight (18%) explicitly theorised how ethnicity related to health. The focus groups agreed that (1) ethnicity should not be prescribed by others (individuals could be asked to describe their ethnicity in free-text, which researchers could synthesise to extract relevant dimensions of ethnicity for their research) and (2) Ethnicity changes over time and context according to personal experience, social pressure, and nationality change. The lived experience of ethnicity of migrants and non-migrants is not fully interchangeable, even if they share the same ethnic category. INTERPRETATION: Researchers should communicate clearly how ethnicity is operationalised in their studies, with appropriate justification for clustering and analysis that is meaningfully theorised. Our study was limited by its non-systematic nature. Implementing the recommendation to capture ethnicity via free text remains challenging in administrative data systems. FUNDING: UCL Engagement Beacon Bursary.

How is ethnicity reported, described, and analysed in health research in the UK? A bibliographical review and focus group discussions with young refugees.

BACKGROUND: The ethnicity data gap pertains to 3 major challenges to address ethnic health inequality: 1) Under-representation of ethnic minorities in research; 2) Poor data quality on ethnicity; 3) Ethnicity data not being meaningfully analysed. These challenges are especially relevant for research involving under-served migrant populations in the UK. We aimed to review how ethnicity is captured, reported, analysed and theorised within policy-relevant research on ethnic health inequities. METHODS: We reviewed a selection of the 1% most highly cited population health papers that reported UK data on ethnicity, and extracted how ethnicity was recorded and analysed in relation to health outcomes. We focused on how ethnicity was obtained (i.e. self reported or not), how ethnic groups were categorised, whether justification was provided for any categorisation, and how ethnicity was theorised to be related to health. We held three 1-h-long guided focus groups with 10 young people from Nigeria, Turkistan, Syria, Yemen and Iran. This engagement helped us shape and interpret our findings, and reflect on. 1) How should ethnicity be asked inclusively, and better recorded? 2) Does self-defined ethnicity change over time or context? If so, why? RESULTS: Of the 44 included papers, most (19; 43%) used self-reported ethnicity, categorised in a variety of ways. Of the 27 papers that aggregated ethnicity, 13 (48%) provided justification. Only 8 of 33 papers explicitly theorised how ethnicity related to health. The focus groups agreed that 1) Ethnicity should not be prescribed by others; individuals could be asked to describe their ethnicity in free-text which researchers could synthesise to extract relevant dimensions of ethnicity for their research; 2) Ethnicity changes over time and context according to personal experience, social pressure, and nationality change; 3) Migrants and non-migrants' lived experience of ethnicity is not fully inter-changeable, even if they share the same ethnic category. CONCLUSIONS: Ethnicity is a multi-dimensional construct, but this is not currently reflected in UK health research studies, where ethnicity is often aggregated and analysed without justification. Researchers should communicate clearly how ethnicity is operationalised for their study, with appropriate justification for clustering and analysis that is meaningfully theorised. We can only start to tackle ethnic health inequity by treating ethnicity as rigorously as any other variables in our research.

'On paper, you're normal': narratives of unseen health needs among women who have had children removed from their care.

BACKGROUND: Mothers who have children removed from their care often have complex needs. These women have poor health outcomes and are dying earlier than their peers from preventable and amenable causes. Yet there is little known about how health care services might mitigate these risks. This study aimed to listen to the voices of women who had children removed from their care to understand their experiences of health and healthcare. METHODS: We used a narrative approach to collect and analyse interview data with six mothers who had experienced child removal in England. Each participant was asked to reflect on their life and main health challenges. RESULTS: Three narrative subplots were developed to consolidate experiences of unmet health need: (i) 'on paper you're normal': narratives of complex need, (ii) 'in my family, everyone had issues': narratives of whole family need and (iii) 'I'm still mummy, no matter where they are': narratives of maternal identity and health. CONCLUSIONS: Findings highlight limitations within current systems of support, including a culture of distrust and women falling between the gaps of services. Women's narratives illustrate opportunities for health intervention, especially immediately following child removal.

Number and timing of primary cleft lip and palate repair surgeries in England: whole nation study of electronic health records before and during the COVID-19 pandemic.

OBJECTIVE: To quantify differences in number and timing of first primary cleft lip and palate (CLP) repair procedures during the first year of the COVID-19 pandemic (1 April 2020 to 31 March 2021; 2020/2021) compared with the preceding year (1 April 2019 to 31 March 2020; 2019/2021). DESIGN: National observational study of administrative hospital data. SETTING: National Health Service hospitals in England. STUDY POPULATION: Children <5 years undergoing primary repair for an orofacial cleft Population Consensus and Surveys Classification of Interventions and Procedures-fourth revisions (OPCS-4) codes F031, F291). MAIN EXPOSURE: Procedure date (2020/2021 vs 2019/2020). MAIN OUTCOMES: Numbers and timing (age in months) of first primary CLP procedures. RESULTS: 1716 CLP primary repair procedures were included in the analysis. In 2020/2021, 774 CLP procedures were carried out compared with 942 in 2019/2020, a reduction of 17.8% (95% CI 9.5% to 25.4%). The reduction varied over time in 2020/2021, with no surgeries at all during the first 2 months (April and May 2020). Compared with 2019/2020, first primary lip repair procedures performed in 2020/2021 were delayed by 1.6 months on average (95% CI 0.9 to 2.2 months). Delays in primary palate repairs were smaller on average but varied across the nine geographical regions. CONCLUSION: There were significant reductions in the number and delays in timing of first primary CLP repair procedures in England during the first year of the pandemic, which may affect long-term outcomes.

Umbrella systematic review finds limited evidence that school absence explains the association between chronic health conditions and lower academic attainment.

Introduction: Absence from school is more frequent for children with chronic health conditions (CHCs) than their peers and may be one reason why average academic attainment scores are lower among children with CHCs. Methods: We determined whether school absence explains the association between CHCs and academic attainment through a systematic review of systematic reviews of comparative studies involving children with or without CHCs and academic attainment. We extracted results from any studies that tested whether school absence mediated the association between CHCs and academic attainment. Results: We identified 27 systematic reviews which included 441 unique studies of 7, 549, 267 children from 47 jurisdictions. Reviews either covered CHCs generally or were condition-specific (e.g., chronic pain, depression, or asthma). Whereas reviews found an association between a range of CHCs (CHCs generally, cystic fibrosis, hemophilia A, end-stage renal disease (pre-transplant), end-stage kidney disease (pre-transplant), spina bifida, congenital heart disease, orofacial clefts, mental disorders, depression, and chronic pain) and academic attainment, and though it was widely hypothesized that absence was a mediator in these associations, only 7 of 441 studies tested this, and all findings show no evidence of absence mediation. Conclusion: CHCs are associated with lower academic attainment, but we found limited evidence of whether school absence mediates this association. Policies that focus solely on reducing school absence, without adequate additional support, are unlikely to benefit children with CHCs. Systematic review registration: https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=285031, identifier: CRD42021285031.

Parental health in the context of public family care proceedings: A scoping review of evidence and interventions.

BACKGROUND: Child protective services (CPS), or their equivalent, have statutory power to remove children from birth parents in instances of child abuse, neglect, or concerns around parenting capacity via public family care proceedings. Parents who have children subject to proceedings, 'birth parents', often have complex health and social care needs. OBJECTIVE: We aimed to review what is known about the health needs of birth parents and the interventions implemented to support these health needs. METHODS: We searched PubMed, Scopus, and grey literature using a systematic strategy of key concepts "health", "care proceedings", and "parents". We included all publications in English that reported parental health in the context of care proceedings from the 1st of January 2000 to the 1st of March 2021. RESULTS: Included studies (n = 61) reported on maternal health (57 %) or the health of both parents (40 %), with only one study reporting on fathers alone. We conceptually categorised parental health need (n = 41) into i) mental health, ii) physical health, iii) substance misuse, iv) developmental disorders, and v) reproductive health. Health inequities and poor access to services were described across all categories, with longstanding issues often pre-dating proceedings or the child's birth. All interventions supporting parental health (n = 20) were targeted at mothers, with some supporting fathers (n = 8), formally or informally. We grouped similar interventions into three types: alternative family courts, wrap-around services, and specialist advocacy/peer support. CONCLUSIONS: Parents who have children subject to care proceedings have complex health needs that pre-date CPS concerns. The studies included in our review strongly suggest that health issues are exacerbated by child removal, triggering deteriorations in mental health, poor antenatal health for subsequent pregnancies, and avoidable mortality. Findings highlight the need for targeted and timely intervention for parents to improve whole-family outcomes. There are models that have been designed, implemented, and tested using relationship-based, trauma-informed, multidisciplinary, family-focused, and long-term approaches.

Trends in survival of children with severe congenital heart defects by gestational age at birth: A population-based study using administrative hospital data for England.

BACKGROUND: Children with congenital heart defects (CHD) are twice as likely as their peers to be born preterm (<37 weeks' gestation), yet descriptions of recent trends in long-term survival by gestational age at birth (GA) are lacking. OBJECTIVES: To quantify changes in survival to age 5 years of children in England with severe CHD by GA. METHODS: We estimated changes in survival to age five of children with severe CHD and all other children born in England between April 2004 and March 2016, overall and by GA-group using linked hospital and mortality records. RESULTS: Of 5,953,598 livebirths, 5.7% (339,080 of 5,953,598) were born preterm, 0.35% (20,648 of 5,953,598) died before age five and 3.6 per 1000 (21,291 of 5,953,598) had severe CHD. Adjusting for GA, under-five mortality rates fell at a similar rate between 2004-2008 and 2012-2016 for children with severe CHD (adjusted hazard ratio [HR] 0.79, 95% CI 0.71, 0.88) and all other children (HR 0.78, 95% CI 0.76, 0.81). For children with severe CHD, overall survival to age five increased from 87.5% (95% CI 86.6, 88.4) in 2004-2008 to 89.6% (95% CI 88.9, 90.3) in 2012-2016. There was strong evidence for better survival in the ≥39-week group (90.2%, 95% CI 89.1, 91.2 to 93%, 95% CI 92.4, 93.9), weaker evidence at 24-31 and 37-38 weeks and no evidence at 32-36 weeks. We estimate that 51 deaths (95% CI 24, 77) per year in children with severe CHD were averted in 2012-2016 compared to what would have been the case had 2004-2008 mortality rates persisted. CONCLUSIONS: Nine out of 10 children with severe CHD in 2012-2016 survived to age five. The small improvement in survival over the study period was driven by increased survival in term children. Most children with severe CHD are reaching school age and may require additional support by schools and healthcare services.

Gestational age at birth, chronic conditions and school outcomes: a population-based data linkage study of children born in England.

INTRODUCTION: We aimed to generate evidence about child development measured through school attainment and provision of special educational needs (SEN) across the spectrum of gestational age, including for children born early term and >41 weeks of gestation, with and without chronic health conditions. METHODS: We used a national linked dataset of hospital and education records of children born in England between 1 September 2004 and 31 August 2005. We evaluated school attainment at Key Stage 1 (KS1; age 7) and Key Stage 2 (KS2; age 11) and any SEN by age 11. We stratified analyses by chronic health conditions up to age 2, and size-for-gestation, and calculated population attributable fractions (PAF). RESULTS: Of 306 717 children, 5.8% were born <37 weeks gestation and 7.0% had a chronic condition. The percentage of children not achieving the expected level at KS1 increased from 7.6% at 41 weeks, to 50.0% at 24 weeks of gestation. A similar pattern was seen at KS2. SEN ranged from 29.0% at 41 weeks to 82.6% at 24 weeks. Children born early term (37-38 weeks of gestation) had poorer outcomes than those born at 40 weeks; 3.2% of children with SEN were attributable to having a chronic condition compared with 2.0% attributable to preterm birth. CONCLUSIONS: Children born with early identified chronic conditions contribute more to the burden of poor school outcomes than preterm birth. Evaluation is needed of how early health characteristics can be used to improve preparation for education, before and at entry to school.

Impact of counselling provision in primary schools on child and adolescent mental health service referral rates: a longitudinal observational cohort study.

BACKGROUND: In the United Kingdom, schools play an increasingly important role in supporting young peoples' mental health. While there is a growing evidence base to support the effectiveness of school-based interventions, less is known about how these provisions impact on local Child and Adolescent Mental Health Service (CAMHS) referral rates. There is a concern that an increase in school-based provision might lead to an increase in CAMHS referrals and overwhelm services. We aimed to examine the longitudinal association between Place2Be counselling provision in primary schools on CAMHS referral rates in South London. METHOD: This was a retrospective cohort study using linked data from the National Pupil Database (NPD) and CAMHS referrals to the South London and Maudsley's NHS Foundation Trust (SLaM) identified through the Clinical Record Interactive Search (CRIS) tool. The cohort included a total of 285 state-maintained primary schools in four London boroughs for the academic years of 2007-2012. During the study period, 23 of these schools received school-based mental health provision from Place2Be. The primary outcome was the incident rate ratio (IRR) of school-level accepted CAMHS referrals in 2012/13 in schools with, or without, Place2Be provision. RESULTS: There was no significant association between elevated rates of CAMHS referral and Place2Be provision, even after comprehensive adjustment for school-level and pupil characteristics (IRR 0.91 (0.67-1.23)). School-level characteristics, including higher proportion of white-British pupils (IRR 1.009 (1.002-1.02)), medical staff ratio (IRR 6.49 (2.05-20.6)) and poorer Ofsted school inspection ratings (e.g. IRR 1.58 (1.06-2.34) for 'Requires Improvement' vs. 'Outstanding') were associated with increased CAMHS referral rates. CONCLUSIONS: Place2Be provision did not result in increased specialist mental health referrals; however, other school-level characteristics did. Future research should investigate pupils' Place2Be clinical outcomes, as well the outcomes of individuals referred to CAMHS to better understand which needs are being met by which services.

Does hospital variation in intrapartum-related perinatal mortality among caesarean births reflect differences in quality of care? Cross-sectional study in 21 hospitals in Burkina Faso.

OBJECTIVES: To examine hospital variation in crude and risk-adjusted rates of intrapartum-related perinatal mortality among caesarean births. DESIGN: Secondary analysis of data from the DECIDE (DECIsion for caesarean DElivery) cluster randomised trial postintervention phase. SETTING: 21 district and regional hospitals in Burkina Faso. PARTICIPANTS: All 5134 women giving birth by caesarean section in a 6-month period in 2016. PRIMARY OUTCOME MEASURE: Intrapartum-related perinatal mortality (fresh stillbirth or neonatal death within 24 hours of birth). RESULTS: Almost 1 in 10 of 5134 women giving birth by caesarean experienced an intrapartum-related perinatal death. Crude mortality rates varied substantially from 21 to 189 per 1000 between hospitals. Variation was markedly reduced after adjusting for case mix differences (the median OR decreased from 1.9 (95% CI 1.5 to 2.5) to 1.3 (95% CI 1.2 to 1.7)). However, higher and more variable adjusted mortality persisted among hospitals performing fewer caesareans per month. Additionally, adjusting for caesarean care components did not further reduce variation (median OR=1.4 (95% CI 1.2 to 1.8)). CONCLUSIONS: There is a high burden of intrapartum-related perinatal deaths among caesarean births in Burkina Faso and sub-Saharan Africa more widely. Variation in adjusted mortality rates indicates likely differences in quality of caesarean care between hospitals, particularly lower volume hospitals. Improving access to and quality of emergency obstetric and newborn care is an important priority for improving survival of babies at birth. TRIAL REGISTRATION NUMBER: ISRCTN48510263.

COVID-19-related school closures and patterns of hospital admissions with stress-related presentations in secondary school-aged adolescents: weekly time series.

This study examines health service indicators of stress-related presentations (relating to pain, mental illness, psychosomatic symptoms and self-harm) in adolescents of secondary school age, using Hospital Episode Statistics data for England. We examined weekly time series data for three academic years spanning the time before (2018-2019) and during the COVID-19 pandemic (2019-2020 and 2020-2021), including the first lockdown when schools were closed to the majority of pupils. For all secondary school children, weekly stress presentations dropped following school closures. However, patterns of elevated stress during school terms re-established after reopening, with girls aged 11-15 showing an overall increase compared with pre-pandemic rates.

Reductions in hospital care among clinically vulnerable children aged 0-4 years during the COVID-19 pandemic.

OBJECTIVE: To quantify reductions in hospital care for clinically vulnerable children during the COVID-19 pandemic. DESIGN: Birth cohort. SETTING: National Health Service hospitals in England. STUDY POPULATION: All children aged <5 years with a birth recorded in hospital administrative data (January 2010-March 2021). MAIN EXPOSURE: Clinical vulnerability defined by a chronic health condition, preterm birth (<37 weeks' gestation) or low birth weight (<2500 g). MAIN OUTCOMES: Reductions in care defined by predicted hospital contact rates for 2020, estimated from 2015 to 2019, minus observed rates per 1000 child years during the first year of the pandemic (March 2020-2021). RESULTS: Of 3 813 465 children, 17.7% (one in six) were clinically vulnerable (9.5% born preterm or low birth weight, 10.3% had a chronic condition). Reductions in hospital care during the pandemic were much higher for clinically vulnerable children than peers: respectively, outpatient attendances (314 vs 73 per 1000 child years), planned admissions (55 vs 10) and unplanned admissions (105 vs 79). Clinically vulnerable children accounted for 50.1% of the reduction in outpatient attendances, 55.0% in planned admissions and 32.8% in unplanned hospital admissions. During the pandemic, weekly rates of planned care returned to prepandemic levels for infants with chronic conditions but not older children. Reductions in care differed by ethnic group and level of deprivation. Virtual outpatient attendances increased from 3.2% to 24.8% during the pandemic. CONCLUSION: One in six clinically vulnerable children accounted for one-third to one half of the reduction in hospital care during the pandemic.

Changes in adolescents' planned hospital care during the COVID-19 pandemic: analysis of linked administrative data.

OBJECTIVE: To describe changes in planned hospital care during the pandemic for vulnerable adolescents receiving children's social care (CSC) services or special educational needs (SEN) support, relative to their peers. DESIGN: Observational cohort in the Education and Child Health Insights from Linked Data database (linked de-identified administrative health, education and social care records of all children in England). STUDY POPULATION: All secondary school pupils in years 7-11 in academic year 2019/2020 (N=3 030 235). MAIN EXPOSURE: Receiving SEN support or CSC services. MAIN OUTCOMES: Changes in outpatient attendances and planned hospital admissions during the first 9 months of the pandemic (23 March-31 December 2020), estimated by comparing predicted with observed numbers and rates per 1000 child-years. RESULTS: A fifth of pupils (20.5%) received some form of statutory support: 14.2% received SEN support only, 3.6% received CSC services only and 2.7% received both. Decreases in planned hospital care were greater for these vulnerable adolescents than their peers: -290 vs -225 per 1000 child-years for outpatient attendances and -36 vs -16 per 1000 child-years for planned admissions. Overall, 21% of adolescents who were vulnerable disproportionately bore 25% of the decrease in outpatient attendances and 37% of the decrease in planned hospital admissions. Vulnerable adolescents were less likely than their peers to have face-to-face outpatient care. CONCLUSION: These findings indicate that socially vulnerable groups of children have high health needs, which may need to be prioritised to ensure equitable provision, including for catch-up of planned care postpandemic.

What makes administrative data "research-ready"? A systematic review and thematic analysis of published literature.

Introduction: Administrative data are a valuable research resource, but are under-utilised in the UK due to governance, technical and other barriers (e.g., the time and effort taken to gain secure data access). In recent years, there has been considerable government investment in making administrative data "research-ready", but there is no definition of what this term means. A common understanding of what constitutes research-ready administrative data is needed to establish clear principles and frameworks for their development and the realisation of their full research potential. Objective: To define the characteristics of research-ready administrative data based on a systematic review and synthesis of existing literature. Methods: On 29th June 2021, we systematically searched seven electronic databases for (1) peer-reviewed literature (2) related to research-ready administrative data (3) written in the English language. Following supplementary searches and snowball screening, we conducted a thematic analysis of the identified relevant literature. Results: Overall, we screened 2,375 records and identified 38 relevant studies published between 2012 and 2021. Most related to administrative data from the UK and US and particularly to health data. The term research-ready was used inconsistently in the literature and there was some conflation with the concept of data being ready for statistical analysis. From the thematic analysis, we identified five defining characteristics of research-ready administrative data: (a) accessible, (b) broad, (c) curated, (d) documented and (e) enhanced for research purposes. Conclusions: Our proposed characteristics of research-ready administrative data could act as a starting point to help data owners and researchers develop common principles and standards. In the more immediate term, the proposed characteristics are a useful framework for cataloguing existing research-ready administrative databases and relevant resources that can support their development.

Hospital admissions for stress-related presentations among school-aged adolescents during term time versus holidays in England: weekly time series and retrospective cross-sectional analysis.

BACKGROUND: Schools are a potential stressor for adolescents and may contribute to emergency hospital admissions. AIMS: We describe rates of stress-related presentations (SRPs) among school-aged adolescents (11-17 years) during school terms and holidays, and explore differences by age and gender. METHOD: Using national administrative hospital data, we defined an SRP as an emergency hospital admission with a primary diagnosis related to pain, psychosomatic symptoms (e.g. fatigue) or mental health problems, or with self-harm indicated in any diagnostic position. We estimated incidence rate ratios for weekly SRPs in term time versus holidays from 2014-2015 to 2017-2018, using negative binomial regression models, stratified by age and gender. We estimated the cumulative incidence of any SRP between 11 and 17 years by analysing prior hospital admission histories of adolescents with an SRP in 2017-2018. RESULTS: Over the 4-year study period, 305 491 SRPs in 171 013 school-aged adolescents accounted for 31% of emergency admissions for this group. SRPs were predominantly for mental health problems or self-harm (38%), or pain (35%). Weekly admission rates for SRPs were higher in term time than holidays for all ages (age-specific incidence rate ratios were 1.15-1.49 for girls and 1.08-1.60 for boys). Rates were highest for girls aged 14 and 15 years. The estimated cumulative incidence of any SRP between 11 and 17 years was 7.9% for girls and 4.1% for boys. CONCLUSIONS: Hospital admissions for SRPs are common among adolescents, affecting around two girls and one boy in every classroom. Higher rates in term time than holidays suggest that school factors may contribute.

An informatics consult approach for generating clinical evidence for treatment decisions.

BACKGROUND: An Informatics Consult has been proposed in which clinicians request novel evidence from large scale health data resources, tailored to the treatment of a specific patient. However, the availability of such consultations is lacking. We seek to provide an Informatics Consult for a situation where a treatment indication and contraindication coexist in the same patient, i.e., anti-coagulation use for stroke prevention in a patient with both atrial fibrillation (AF) and liver cirrhosis. METHODS: We examined four sources of evidence for the effect of warfarin on stroke risk or all-cause mortality from: (1) randomised controlled trials (RCTs), (2) meta-analysis of prior observational studies, (3) trial emulation (using population electronic health records (N = 3,854,710) and (4) genetic evidence (Mendelian randomisation). We developed prototype forms to request an Informatics Consult and return of results in electronic health record systems. RESULTS: We found 0 RCT reports and 0 trials recruiting for patients with AF and cirrhosis. We found broad concordance across the three new sources of evidence we generated. Meta-analysis of prior observational studies showed that warfarin use was associated with lower stroke risk (hazard ratio [HR] = 0.71, CI 0.39-1.29). In a target trial emulation, warfarin was associated with lower all-cause mortality (HR = 0.61, CI 0.49-0.76) and ischaemic stroke (HR = 0.27, CI 0.08-0.91). Mendelian randomisation served as a drug target validation where we found that lower levels of vitamin K1 (warfarin is a vitamin K1 antagonist) are associated with lower stroke risk. A pilot survey with an independent sample of 34 clinicians revealed that 85% of clinicians found information on prognosis useful and that 79% thought that they should have access to the Informatics Consult as a service within their healthcare systems. We identified candidate steps for automation to scale evidence generation and to accelerate the return of results. CONCLUSION: We performed a proof-of-concept Informatics Consult for evidence generation, which may inform treatment decisions in situations where there is dearth of randomised trials. Patients are surprised to know that their clinicians are currently not able to learn in clinic from data on 'patients like me'. We identify the key challenges in offering such an Informatics Consult as a service.

Linking education and hospital data in England: linkage process and quality.

INTRODUCTION: Linkage of administrative data for universal state education and National Health Service (NHS) hospital care would enable research into the inter-relationships between education and health for all children in England. OBJECTIVES: We aim to describe the linkage process and evaluate the quality of linkage of four one-year birth cohorts within the National Pupil Database (NPD) and Hospital Episode Statistics (HES). METHODS: We used multi-step deterministic linkage algorithms to link longitudinal records from state schools to the chronology of records in the NHS Personal Demographics Service (PDS; linkage stage 1), and HES (linkage stage 2). We calculated linkage rates and compared pupil characteristics in linked and unlinked samples for each stage of linkage and each cohort (1990/91, 1996/97, 1999/00, and 2004/05). RESULTS: Of the 2,287,671 pupil records, 2,174,601 (95%) linked to HES. Linkage rates improved over time (92% in 1990/91 to 99% in 2004/05). Ethnic minority pupils and those living in more deprived areas were less likely to be matched to hospital records, but differences in pupil characteristics between linked and unlinked samples were moderate to small. CONCLUSION: We linked nearly all pupils to at least one hospital record. The high coverage of the linkage represents a unique opportunity for wide-scale analyses across the domains of health and education. However, missed links disproportionately affected ethnic minorities or those living in the poorest neighbourhoods: selection bias could be mitigated by increasing the quality and completeness of identifiers recorded in administrative data or the application of statistical methods that account for missed links. HIGHLIGHTS: Longitudinal administrative records for all children attending state school and acute hospital services in England have been used for research for more than two decades, but lack of a shared unique identifier has limited scope for linkage between these databases.We applied multi-step deterministic linkage algorithms to 4 one-year cohorts of children born 1 September-31 August in 1990/91, 1996/97, 1999/00 and 2004/05. In stage 1, full names, date of birth, and postcode histories from education data in the National Pupil Database were linked to the NHS Personal Demographic Service. In stage 2, NHS number, postcode, date of birth and sex were linked to hospital records in Hospital Episode Statistics.Between 92% and 99% of school pupils linked to at least one hospital record. Ethnic minority pupils and pupils who were living in the most deprived areas were least likely to link. Ethnic minority pupils were less likely than white children to link at the first step in both algorithms.Bias due to linkage errors could lead to an underestimate of the health needs in disadvantaged groups. Improved data quality, more sensitive linkage algorithms, and/or statistical methods that account for missed links in analyses, should be considered to reduce linkage bias.