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Objective To address the challenge of linking identifiable but low-sensitivity place-based data with high-sensitivity, de-identified, health and socio-economic records. While also minimising the financial and carbon costs of computationally intensive environmental modelling. Approach For domain and legal experts, TRE leads and public contributors to co-develop a trusted system-wide governance model for linking these data. Results We identified the UK’s ‘Unique Property Reference Numbers’ (UPRNs) - a geo-coordinated national property ID number - as ideally suited for linking individuals to households and households to place-based data. Under Data Protection laws, UPRNs are considered inherently identifiable, yet public-domain research use is permitted as the data have low sensitivity and there is broad societal acceptance. Once linked with individuals’ records, additional controls are needed to preserve privacy. We developed a workflow for modelling place-based data at a national level by a single agency and then, using trusted third parties, de-identifying and sharing minimised derived extracts into TREs for linkage and analysis. To maintain confidentiality, the UPRNs of the population of interest are masked by matched ‘control’ UPRNs drawn from the wider population. We will discuss permutations of the model, proof-of-concept implementations in UK TREs and public views on the models proposed. Conclusions The challenge can be addressed by minimising the data flowing between national generators of place-based data and TREs using trusted third parties and masking data to maintain confidentiality. Implications Relatively small adjustments to existing TRE workflows principles could enable new research possibilities without requiring re-evaluation of current governance norms or high-cost infrastructure changes.

Objective We quantified planned and unplanned hospital admissions during adolescence for children with special educational needs (SEN) or placed into the care of the local authority (child looked after in out-of-home care; CLA). Approach We analysed linked hospital, education and social care records with whole nation coverage of England (ECHILD). Our cohort comprised pupils who started secondary school between 2007/8 and 2011/12 (aged 11), with follow-up until 2018/19 (up to 17-22 years old). Hospital admission rates were examined by sex across distinct groups with varying levels of support: i) no support, ii) school-based SEN only, iii) higher SEN (an Education and Health Care Plan) only, iv) CLA only, v) SEN and CLA, and vi) higher SEN and CLA. Negative binomial regression models were used to estimate rate ratios (RR) for each group relative to no support. Results The study population totalled 2,827,464 children; 65% (1,835,404) had no support, 30% (848,620) SEN only, 3% (93,620) higher SEN only, 1% (30,880) SEN and CLA, with the remaining groups accounting for

We aimed to develop a framework for generating synthetic identifier datasets to support development and evaluation of data linkage methods. We evaluated whether replicating associations between attributes and identifiers improved the utility of the synthetic data for assessing linkage error. We determined the steps required to generate synthetic identifiers that replicate the properties of real-world data collection. We generated synthetic versions of a large United Kingdom cohort study (the Avon Longitudinal Study of Parents and Children), according to the quality and completeness of identifiers recorded over several waves of the cohort. We evaluated the utility of the synthetic identifier data in terms of assessing linkage quality (false matches and missed matches). Comparing data from two collection points in ALSPAC, we found within-person disagreement in identifiers (differences in recording due to both natural change and non-valid entries) in 18% of surnames and 12% of forenames. Rates of disagreement varied by maternal age and ethnic group. Synthetic data provided accurate estimates of linkage quality metrics compared with the original data (within 0.13-0.55% for missed matches and 0.00-0.04% for false matches). Incorporating associations between identifier errors and maternal age/ethnicity improved synthetic data utility. Replicating dependencies between attribute values (e.g. ethnicity), values of identifiers (e.g. name), identifier disagreements (e.g. missing values, errors or changes over time), and their patterns and distribution structure enables generation of realistic synthetic data that can be used for robust evaluation of linkage methods. Our framework provides a novel and generalisable mechanism for developing and benchmarking record linkage algorithms.

Objective Monitoring the incidence of chronic health conditions (CHCs) in childhood in England using administrative data to derive numerators and denominators is challenged by unmeasured migration. We used a birth cohort design and different criteria for contact with health or education services to estimate the cumulative incidence of CHCs to age 16 years. Approach We identified all births in Hospital Episode Statistics (HES) from 2002/3 to 2011/12, with follow-up to 2018/19 (maximum age 8 to 16 years), censoring on death, first non-England residence record or 16th birthday. Children must have linked to later HES records and/or the National Pupil Database (NPD), which provides information on all state-school enrolments. The cumulative incidence of CHCs was estimated to age 16 using diagnostic codes in hospital admission records. We also explored temporal variation. Sensitivity analyses varied denominator criteria. Results Between 423,456 children (79.4%, of all HES-recorded births in 2002/3) and 618,054 (97.5% in 2011/12) linked to later HES or NPD records. The cumulative incidence of ever having a recorded CHC before age 16 among children born in 2002/3 or 2003/4 was 24.6%, ranging from 21% to 32% in sensitivity analyses. There was little temporal variation. At least 28% of children with any CHC had more than one body system affected by age 16. Multimorbidity rates rose with later cohorts. Conclusions Approximately one quarter of children are affected by CHCs, but varies depending on how the denominator is defined. More accurate estimation of the incidence of CHCs requires a dynamic population estimate.

Abstract 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.

Improved availability of population-based data via data linkage enables researchers to develop deeper insight into racial health inequities in the UK. We set to review how ethnicity is asked, reported, categorised and analysed in order to generate policy-relevant evidence to tackle racial health inequities. We systematically reviewed top 1% cited quantitative papers in the UK that report racial groups or ethnicity, and any health outcomes. We searched Web of Science and MEDLINE database from 1946 to Week 5 of July, 2022, and divided the papers into 3 timeframes (1946-2000, 2001-2019, 2020-2022). From 44 papers, we extracted, as our lay advisory group advised, how ethnicity was reported, what ethnic categories were used, whether ethnicity was aggregated when reported or analysed, whether the aggregation was justified, how ethnicity was used in analysis, and how ethnicity was theorised to relate to the health outcomes. Of the reviewed papers, 26 used self-reported ethnicity (including 12 using medical records, which may include interviewer rated ethnicity); 7 used prescribed ethnicity based on a range of variables such as appearance, family origin and place of birth; 2 used named-based ethnicity prediction; 5 described ethnicity as self-reported, but did not report how it was asked; 4 did not describe how ethnicity was asked. Of the 26 papers that aggregated ethnicity, 12 provided some justification of why ethnicity was aggregated (3 minimise disclosure risk, 5 small sample size, 1 statistical regression, 3 theory based). Only 9 papers explicitly theorised the role of ethnicity in their analysis, and how it related to the relevant health outcomes. Missing, mixed or other ethnicity were treated variably across studies. Ethnicity is a multi-dimensional construct. Researchers should communicate clearly how ethnicity is operationalised for their studies, with appropriate justification for clustering and analysis that is meaningfully theorised. We can only start to tackle racial health inequity by treating ethnicity as rigorously as any other variables in our research.

IntroductionAbsence 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.MethodsWe 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.ResultsWe 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.ConclusionCHCs 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 registrationhttps://www.crd.york.ac.uk/prospero/display_record.php?RecordID=285031, identifier: CRD42021285031.

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.

Abstract Background People with severe mental illness (SMI) are at greater risk of earlier mortality due to physical health problems including cardiovascular disease (CVD). There is limited work exploring whether physical health interventions for people with SMI can be embedded and/or adopted within specific healthcare settings. This information is necessary to optimise the development of services and interventions within healthcare settings. This study explores the barriers and facilitators of implementing a nurse-delivered intervention (‘PRIMROSE’) designed to reduce CVD risk in people with SMI in primary care, using Normalisation Process Theory (NPT), a theory that explains the dynamics of embedding or ‘normalising’ a complex intervention within healthcare settings. Methods Semi-structured interviews were conducted between April–December 2016 with patients with SMI at risk of CVD who received the PRIMROSE intervention, and practice nurses and healthcare assistants who delivered it in primary care in England. Interviews were audio recorded, transcribed and analysed using thematic analysis. Emergent themes were then mapped on to constructs of NPT. Results Fifteen patients and 15 staff participated. The implementation of PRIMROSE was affected by the following as categorised by the NPT domains: 1) Coherence, where both staff and patients expressed an understanding of the purpose and value of the intervention, 2) Cognitive participation, including mental health stigma and staff perceptions of the compatibility of the intervention to primary care contexts, 3) Collective action, including 3.1. Interactional workability in terms of lack of patient engagement despite flexible appointment scheduling. The structured nature of the intervention and the need for additional nurse time were considered barriers, 3.2. Relational integration i.e. whereby positive relationships between staff and patients facilitated implementation, and access to ‘in-house’ staff support was considered important, 3.3. Skill-set workability in terms of staff skills, knowledge and training facilitated implementation, 3.4. Contextual integration regarding the accessibility of resources sometimes prevented collective action. 4) Reflexive monitoring, where the staff commonly appraised the intervention by suggesting designated timeslots and technology may improve the intervention. Conclusions Future interventions for physical health in people with SMI could consider the following items to improve implementation: 1) training for practitioners in CVD risk prevention to increase practitioners knowledge of physical interventions 2) training in SMI to increase practitioner confidence to engage with people with SMI and reduce mental health stigma and 3) access to resources including specialist services, additional staff and time. Access to specialist behaviour change services may be beneficial for patients with specific health goals. Additional staff to support workload and share knowledge may also be valuable. More time for appointments with people with SMI may allow practitioners to better meet patient needs.

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.

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 uality 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.

BackgroundResearch has questioned the safety of delaying or withholding antibiotics for suspected urinary tract infection (UTI) in older patients. We evaluated the association between antibiotic treatment for lower UTI and risk of bloodstream infection (BSI) in adults aged ≥65 years in primary care.Methods and findingsWe analyzed primary care records from patients aged ≥65 years in England with community-onset UTI using the Clinical Practice Research Datalink (2007-2015) linked to Hospital Episode Statistics and census data. The primary outcome was BSI within 60 days, comparing patients treated immediately with antibiotics and those not treated immediately. Crude and adjusted associations between exposure and outcome were estimated using generalized estimating equations. A total of 147,334 patients were included representing 280,462 episodes of lower UTI. BSI occurred in 0.4% (1,025/244,963) of UTI episodes with immediate antibiotics versus 0.6% (228/35,499) of episodes without immediate antibiotics. After adjusting for patient demographics, year of consultation, comorbidities, smoking status, recent hospitalizations, recent accident and emergency (A&E) attendances, recent antibiotic prescribing, and home visits, the odds of BSI were equivalent in patients who were not treated with antibiotics immediately and those who were treated on the date of their UTI consultation (adjusted odds ratio [aOR] 1.13, 95% CI 0.97-1.32, p-value = 0.105). Delaying or withholding antibiotics was associated with increased odds of death in the subsequent 60 days (aOR 1.17, 95% CI 1.09-1.26, p-value < 0.001), but there was limited evidence that increased deaths were attributable to urinary-source BSI. Limitations include overlap between the categories of immediate and delayed antibiotic prescribing, residual confounding underlying differences between patients who were/were not treated with antibiotics, and lack of microbiological diagnosis for BSI.ConclusionsIn this study, we observed that delaying or withholding antibiotics in older adults with suspected UTI did not increase patients' risk of BSI, in contrast with a previous study that analyzed the same dataset, but mortality was increased. Our findings highlight uncertainty around the risks of delaying or withholding antibiotic treatment, which is exacerbated by systematic differences between patients who were and were not treated immediately with antibiotics. Overall, our findings emphasize the need for improved diagnostic/risk prediction strategies to guide antibiotic prescribing for suspected UTI in older adults.

BackgroundOpioid addiction is a major public health threat to healthy life expectancy; however, little is known of long-term mortality for mothers with opioid use in pregnancy. Pregnancy and delivery care are opportunities to improve access to addiction and supportive services. Treating neonatal abstinence syndrome (NAS) as a marker of opioid use during pregnancy, this study reports long-term maternal mortality among mothers with a birth affected by NAS in relation to that of mothers without a NAS-affected birth in 2 high-prevalence jurisdictions, England and Ontario, Canada.Methods and findingsWe conducted a population-based study using linked administrative health data to develop parallel cohorts of mother-infant dyads in England and Ontario between 2002 and 2012. The study population comprised 13,577 and 4,966 mothers of infants with NAS and 4,205,675 and 929,985 control mothers in England and Ontario, respectively. Death records captured all-cause maternal mortality after delivery through March 31, 2016, and cause-specific maternal mortality to December 31, 2014. The primary exposure was a live birth of an infant with NAS, and the main outcome was all deaths among mothers following their date of delivery. We modelled the association between NAS and all-cause maternal mortality using Cox regression, and the cumulative incidence of cause-specific mortality within a competing risks framework. All-cause mortality rates, 10-year cumulative incidence risk of death, and crude and age-adjusted hazard ratios were calculated. Estimated crude 10-year mortality based on Kaplan-Meier curves in mothers of infants with NAS was 5.1% (95% CI 4.7%-5.6%) in England and 4.6% (95% CI 3.8%-5.5%) in Ontario versus 0.4% (95% CI 0.41%-0.42%) in England and 0.4% (95% CI 0.38%-0.41%) in Ontario for controls (p < 0.001 for all comparisons). Survival curves showed no clear inflection point or period of heightened risk. The crude hazard ratio for all-cause mortality was 12.1 (95% 11.1-13.2; p < 0.001) in England and 11.4 (9.7-13.4; p < 0.001) in Ontario; age adjustment did not reduce the hazard ratios. The cumulative incidence of death was higher among NAS mothers than controls for almost all causes of death. The majority of deaths were by avoidable causes, defined as those that are preventable, amenable to care, or both. Limitations included lack of direct measures of maternal opioid use, other substance misuse, and treatments or supports received.ConclusionsIn this study, we found that approximately 1 in 20 mothers of infants with NAS died within 10 years of delivery in both England and Canada-a mortality risk 11-12 times higher than for control mothers. Risk of death was not limited to the early postpartum period targeted by most public health programs. Policy responses to the current opioid epidemic require effective strategies for long-term support to improve the health and welfare of opioid-using mothers and their children.

Background: Effective interventions are needed to prevent cardiovascular disease (CVD) in people with severe mental illnesses (SMI) because their risk of CVD is higher than that of the general population. Objectives: (1) Develop and validate risk models for predicting CVD events in people with SMI and evaluate their cost-effectiveness, (2) develop an intervention to reduce levels of cholesterol and CVD risk in SMI and (3) test the clinical effectiveness and cost-effectiveness of this new intervention in primary care. Design: Mixed methods with patient and public involvement throughout. The mixed methods were (1) a prospective cohort and risk score validation study and cost-effectiveness modelling, (2) development work (focus groups, updated systematic review of interventions, primary care database studies investigating statin prescribing and effectiveness) and (3) cluster randomised controlled trial (RCT) assessing the clinical effectiveness and cost-effectiveness of a new practitioner-led intervention, and fidelity assessment of audio-recorded appointments. Setting: General practices across England. Participants: All studies included adults with SMI (schizophrenia, bipolar disorder or other non-organic psychosis). The RCT included adults with SMI and two or more CVD risk factors. Interventions: The intervention consisted of 8–12 appointments with a practice nurse/health-care assistant over 6 months, involving collaborative behavioural approaches to CVD risk factors. The intervention was compared with routine practice with a general practitioner (GP). Main outcome measures: The primary outcome for the risk score work was CVD events, in the cost-effectiveness modelling it was quality-adjusted life-years (QALYs) and in the RCT it was level of total cholesterol. Data sources: Databases studies used The Health Improvement Network (THIN). Intervention development work included focus groups and systematic reviews. The RCT collected patient self-reported and routine NHS GP data. Intervention appointments were audio-recorded. Results: Two CVD risk score models were developed and validated in 38,824 people with SMI in THIN: the Primrose lipid model requiring cholesterol levels, and the Primrose body mass index (BMI) model with no blood test. These models performed better than published Cox Framingham models. In health economic modelling, the Primrose BMI model was most cost-effective when used as an algorithm to drive statin prescriptions. Focus groups identified barriers to, and facilitators of, reducing CVD risk in SMI including patient engagement and motivation, staff confidence, involving supportive others, goal-setting and continuity of care. Findings were synthesised with evidence from updated systematic reviews to create the Primrose intervention and training programme. THIN cohort studies in 16,854 people with SMI demonstrated that statins effectively reduced levels of cholesterol, with similar effect sizes to those in general population studies over 12–24 months (mean decrease 1.2 mmol/l). Cluster RCT: 76 GP practices were randomised to the Primrose intervention (n = 38) or treatment as usual (TAU) (n = 38). The primary outcome (level of cholesterol) was analysed for 137 out of 155 participants in Primrose and 152 out of 172 in TAU. There was no difference in levels of cholesterol at 12 months [5.4 mmol/l Primrose vs. 5.5 mmol/l TAU; coefficient 0.03; 95% confidence interval (CI) –0.22 to 0.29], nor in secondary outcomes related to cardiometabolic parameters, well-being or medication adherence. Mean cholesterol levels decreased over 12 months in both arms (–0.22 mmol/l Primrose vs. –0.39 mmol/l TAU). There was a significant reduction in the cost of inpatient mental health attendances (–£799, 95% CI –£1480 to –£117) and total health-care costs (–£895, 95% CI –£1631 to –£160; p = 0.012) in the intervention group, but no significant difference in QALYs (–0.011, 95% CI –0.034 to 0.011). A total of 69% of patients attended two or more Primrose appointments. Audiotapes revealed moderate fidelity to intervention delivery (67.7%). Statin prescribing and adherence was rarely addressed. Limitations: RCT participants and practices may not represent all UK practices. CVD care in the TAU arm may have been enhanced by trial procedures involving CVD risk screening and feedback. Conclusions: SMI-specific CVD risk scores better predict new CVD if used to guide statin prescribing in SMI. Statins are effective in reducing levels of cholesterol in people with SMI in UK clinical practice. This primary care RCT evaluated an evidence-based practitioner-led intervention that was well attended by patients and intervention components were delivered. No superiority was shown for the new intervention over TAU for level of cholesterol, but cholesterol levels decreased over 12 months in both arms and the intervention showed fewer inpatient admissions. There was no difference in cholesterol levels between the intervention and TAU arms, which might reflect better than standard general practice care in TAU, heterogeneity in intervention delivery or suboptimal emphasis on statins. Future work: The new risk score should be updated, deployed and tested in different settings and compared with the latest versions of CVD risk scores in different countries. Future research on CVD risk interventions should emphasise statin prescriptions more. The mechanism behind lower costs with the Primrose intervention needs exploring, including SMI-related training and offering frequent support to people with SMI in primary care. Trial registration: Current Controlled Trials ISRCTN13762819. Funding: This project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research; Vol. 7, No. 2. See the NIHR Journals Library website for further project information. Professor David Osborn is supported by the University College London Hospital NIHR Biomedical Research Centre and he was also in part supported by the NIHR Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North Thames at Barts Health NHS Trust.

ObjectiveTo evaluate variation in trends in bloodstream infection (BSI) rates in neonatal units (NNUs) in England according to the data sources and linkage methods used.MethodsWe used deterministic and probabilistic methods to link clinical records from 112 NNUs in the National Neonatal Research Database (NNRD) to national laboratory infection surveillance data from Public Health England. We calculated the proportion of babies in NNRD (aged ResultsUsing deterministic and probabilistic linkage, 5,629 of 349,740 babies admitted to a NNU in NNRD linked with 6,660 BSI episodes accounting for 38% of 17,388 BSI records aged ConclusionLinkage that combines BSI records from national laboratory surveillance and clinical NNU data sources, and use of probabilistic methods, substantially improved ascertainment of BSI and estimates of BSI trends over time, compared with single data sources.

Introduction In England, details on hospital admissions and mortality are recorded nationally, but housing status and patients’ hospital discharge arrangements are only recorded locally within discharge services. These data are required to evaluate specialist homeless hospital discharge (HHD) services in England, and can be obtained through linkage within and across sectors. Objectives and Approach We aimed to improve linkage to enable the evaluation of HHD schemes. 16 sites with a scheme were recruited along with a specialist facility that deliver screening and treatment services to homeless hostels (Find\&Treat). Linkage fields including National Health Service number (NHS number), name, gender and birthdate for clinical contacts between November 2013 and November 2016 were collected and linked to national hospital data, Hospital Episodes Statistics (HES). To improve linkage with HES, intermediate-linkage to a gender-names dictionary and a national demographic database (NDD) was performed. Ethics, access permissions were obtained through HRA-REC (REC16/EE/0018) and NHS CAG (16/CAG/0021). Results 47,569 clinical contacts among people who were homeless were collected from Find&Treat and 12,931 from sites. The median age at mid-study period (15th May 2015) among contacts with sites compared to Find&Treat were similar at 44 (IQR 34-53, n=12,905) and 45 (IQR 35-54, n=47,569), respectively. Among Find&Treat, 82% (n=38,905) were contacts with Males and 18% (n=8,650) with Females. Gender was not collected at all HHD sites or for all admissions. 70% of contacts had missing gender and among these contacts, gender was assigned using the gender-names dictionary. After imputing gender, 52% of contacts all linkage fields and 47% had all but NHS number. These data were linked to the NDD, an approximate 60% linkage rate was achieved retrieving complete linkage fields for these contacts. Conclusion/Implications Intermediate linkage steps described here provides the largest dataset of it’s kind, enabling investigations into effectiveness of hospital discharge schemes in England. The study provides generally a proof of concept that large cohorts of hard-to-reach population groups can be obtained through data linkage.

Introduction Opioid-use during pregnancy is indicative of future adversity for mothers and children. We aimed to investigate neonatal abstinence syndrome (NAS) as a marker of drug-use in pregnancy and to compare maternal all-cause mortality relative to those with infants born without NAS in two high prevalence jurisdictions; England and Ontario. Objectives and Approach We developed two parallel cohorts using linked mother-baby records for all births in hospitals in England and Ontario between 2002 and 2013. Mothers with opioid-use were identified based on NAS recorded in the baby’s record. Maternal mortality within 10 years of delivery was compared for mothers with and without a NAS-pregnancy. The association between opioid-use in pregnancy and all-cause mortality was modelled using Cox regression. In addition, we estimated the unadjusted cumulative incidence of cause-specific mortality within a competing risks framework. Harmonised clinical codes were used to define all exposures, outcomes and comorbidities. Results The study population comprised 13,581 and 4,966 NAS mothers in England and Ontario, respectively. Controls totalled 4,205,941 for England and 929,985 for Ontario. The crude hazard ratios for all-cause mortality were 12.1 (95% CI; 11.1-13.2) for England and 11.4 (9.7, 13.4) for Ontario, which were attenuated to 9.8 (9.0-10.6) and 9.0 (7.6, 10.7) respectively, after adjustment for maternal age at delivery and Charlson comorbidity index. The cumulative incidence of death was much higher among NAS mothers than controls for all causes except cancer in the English cohort, where estimates were similar. The majority of deaths within the NAS group were attributable to avoidable causes, particularly reflecting unintentional injuries (cumulative incidence of 19.6 (16.6-23.1) for England and 13.9 (9.7-19.3) for Ontario). Conclusion/Implications Our approach demonstrates the utility of mother-baby record linkage to examine long-term health outcomes of vulnerable families. We identified similarly high mortality rates among the mothers of NAS babies in both England and Ontario, indicating a need for public health programs to target support to mothers as well and infants.

Introduction Opioid-addiction is a major public health threat, with rates of drug misuse related deaths increasing in North America and England. Linkage within and between administrative data datasets is important for capturing determinants and outcomes but this vulnerable population is highly susceptible to linkage error, which can result in inaccurate estimates. Objectives and Approach We investigated neonatal abstinence syndrome (NAS) as a marker of opioid-use in pregnancy, using linked mother-baby records to identify maternal opioid-use based on NAS in the baby’s record. Maternal all-cause mortality was compared for mothers with and without a NAS-pregnancy. Bias was assessed through comparison of linked and unlinked NAS baby characteristics. De-identified national hospital inpatient data – including postcode-district and GP surgery-code – were used for deterministic and probabilistic linkage of mothers and babies born in England 2002-2013. Linked national mortality data captured maternal deaths Results Linkage between maternal and baby records was possible for 96% of all live births in England, but for only 88% of study/cohort babies with NAS (n=18,087). NAS babies with unlinked records represented a more vulnerable population with longer hospital stay (median 12 versus 7 days, p

Introduction Monitoring risk-adjusted trends of neonatal bloodstream infection (BSI) is vital and linkage of neonatal electronic health records to national infection surveillance enables this. We demonstrate why changes in data quality and collection methods over time must be accounted for to minimise spurious findings. Objectives and Approach First, we determined the effect of a system change in 2014 (changed from only clinically relevant BSI to automated reporting of all BSI), by investigating changes in number of all BSI and BSI excluding the contaminants coagulase-negative staphylococci for infants aged

Introduction Several studies have shown that a short birth interval is associated with increased risks of adverse perinatal outcomes (e.g.: preterm birth, stillbirth) and neonatal and maternal death. It is unclear whether this relationship is likely to be causal or to reflect confounding due to psychosocial vulnerability. Objectives and Approach To determine the association between birth interval for mothers with and without indicators of vulnerability. Using Hospital Episode Statistics for England, we included mothers with a live birth in 2011. Vulnerability indicators were codes for mental health problems, adversity related injury (ARI), material or social disadvantage (M/SD) recorded in admissions in the previous five years, or age Time (in days) to next delivery within five years was analysed using Cox proportional hazard regression models and adjusted for maternal age, parity, multiple and preterm birth. Results Of 636,876 women delivering in 2011, 93,266 (14.6\%) had indicators of vulnerability: 63,421 (10.0%) for mental health problems, 8,229 (1.2%) for an ARI, 21,616 (3.4%) for M/SD, and 32,622 (5.1%) were teenage mothers. Over a third of mothers (242,401; 38.1%) had another live birth within five years. Median time to next delivery was 957 days (5-95% centiles: 433-1694), and was longest for teenage mothers (979 days, 391-1726), and shortest for women with ARIs (904 days, 391-1697). Vulnerable mothers were more likely than women with no vulnerability indicators to have another live birth (HRadj: 1.13, 95%CI: 1.12-1.14): risks were independently increased for teenage mothers (HRadj: 1.53, 1.50-1.55), women with an ARI (HRadj: 1.15, 1.11-1.19) or mental health problems (HRadj: 1.05, 1.03-1.06). Conclusion/Implications Vulnerable mothers had a shorter subsequent birth interval and an increased risk of birth in the next five years. Maternity care may be an appropriate time to target interventions to vulnerable families to enable choice about timing of subsequent pregnancy.

Aim To determine the association between birth interval for mothers with and without indicators of vulnerability. Methods We included mothers who gave birth in 2011 recorded in Hospital Episode Statistics. Vulnerability indicators included diagnostic codes for mental health problems, adversity related injuries (ARI), material/social disadvantage (MSD) recorded in the previous five years, or age

There is increasing emphasis on primary care services for individuals with severe mental illnesses (SMI), including schizophrenia, bipolar disorder, and other non-organic psychotic disorders. However we lack information on how many people receive these different diagnoses in primary care. Primary care databases offer an opportunity to explore the recording of new SMI diagnoses in representative general practices.We used data from The UK Health Improvement Network (THIN) primary care database including longitudinal patient records for individuals aged over 16 years from 437 general practices. We determined the annual GP recorded rate of first diagnosis of SMI by age, gender, social deprivation and urbanicity between 2000 and 2010.We identified 10,520 individuals with a first record of schizophrenia, bipolar disorder or other non-organic psychosis among 4,164,794 patients. This corresponded to a rate of first diagnosis of 46.4 per 100,000 person years at risk (PYAR) (95% CI 45.4 to 47.4) in the 16-65 age group. The rate of first record of schizophrenia was 9.2 per 100,000 PYAR (95% CI 8.7 to 9.6) in this age group, bipolar disorder was 15.0 per 100,000 PYAR (95% CI 14.4 to 15.5) and other non-organic psychotic disorder was 22.3 per 100,000 PYAR (95% CI 21.6 to 23.0).The rates of GP recorded SMI in primary care records were broadly comparable to incidence rates from previous epidemiological studies of SMI and show similar patterns by socio-demographic characteristics. However there were some differences by specific diagnoses. GPs may be recording rates that are higher than those used to commission services.