Data Resource: The National Pupil Database (NPD)

Introduction: The National Pupil Database (NPD) is a record-level administrative data resource curated by the UK government's Department for Education that is used for funding purposes, school performance tables, policy making, and research. Processes Data are sourced from schools, exam awarding bodies, and local authorities who collect data on an on-going basis and submit to the Department for Education either termly or yearly. Data contents NPD contains child-level and school-level data on all pupils in state schools in England (6.6 million in the 2016/17 academic year). The primary module is the census, which has information on characteristics and school enrolment. Other modules include alternative provision, exam attainment, absence and exclusions. Data from children's social care are also available on children referred for support and those who become looked after. Children's records are linkable across different modules and across time using a nationally unique, anonymised child-level identifier. Linkage to external datasets has also been accomplished using child-level identifiers. Conclusions The NPD is an especially valuable data resource for researchers interested in the educational experience and outcomes of children and young people in England. Although limited by the fact that children in private schools or who are home schooled are not included, it provides a near-complete picture of school trajectories and outcomes for the majority of children. Linkage to other datasets can enhance analyses and provide answers to questions that would otherwise be costly, time consuming and difficult to find

Using linked administrative data for monitoring and evaluating the Family Nurse Partnership in England: A scoping report

This report, commissioned by the FNP National Unit and undertaken by researchers at UCL and the London School of Hygiene and Tropical Medicine, presents a scoping review of how population-based linkage between data from the Family Nurse Partnership (FNP) in England and administrative datasets from other services could be used to generate evidence for commissioning, service evaluation and research. It addresses the methodological considerations, permission pathways and technical challenges of using data from the FNP linked with routinely collected, administrative data from other public services for population-based analyses, at a national and local authority level. Our ambition, when commissioning this work, was to explore whether linking data from FNP with administrative datasets might help provide a richer view about how the FNP intervention is affecting different cohorts of clients and their child after they have graduated. The report suggests that the potential for data linkage to support ongoing evaluation of a wide range of interventions including FNP at a national level is promising and an important area to explore. It makes a significant contribution to understanding the possibilities and constraints for doing this, which include barriers to data linkage at a local level (which we know is crucial for local commissioners) and the significant investment required to realise the potential of this project. We believe this report offers valuable insights other organisations interested in the delivery of evidence based policy may want to pursue

Indicators of adversity recorded in hospitalisation records of children aged less than 5 years or their mothers: a record linkage study of children born in England in 2011

Background Early identification of child adversity (comprising abuse, neglect, social or material adversity) is essential to target early interventions to safeguard children, and support vulnerable families. We determined the prevalence of indicators of adversity recorded in diagnostic codes in child and/or maternal hospital admissions in England. Data Source All birth admissions recorded in the NHS in England in 2011, and subsequent admissions up to 5 years old, linked to maternal records from 1 year before to up to 5 years after delivery. Methods Prevalence of adversity indicators in child and/or maternal admission records that reflect adversity-related injury (ARI), or social or material adversity (SMA). Results Among 646,956 live born children, 2.6% (95% CI: 2.6 to 2.7) had at least one adversity indicator by <5 years (0.8% ARI, 2.6% SMA). Cumulative prevalence was 1.1% in children aged <6 months, 1.2% in children aged <1 year, 2.1% by <=2 years, and 2.6% up to 5 years old. Combined prevalence in maternal and/or child records will be presented. Conclusion To inform health policy, clinical and prognostic significance of adversity indicators requires evaluation through linkage to health and welfare outcomes

Exploring research participation among cancer patients: Analysis of a national survey and an in-depth interview study

Background Inequalities in cancer research participation are thought to exist with certain groups under-represented in research populations; however, much of the evidence is based on small-scale studies. The aim of this study was to explore data from in-depth interviews with cancer patients and a large national survey to investigate variation in who is asked to participate in research and who takes part. Methods Factors associated with research discussion and participation were explored in National Cancer Patient Experience Survey data using multivariate logistic regression and during in-depth interviews with 25 breast cancer patients. Results Survey data were available for 66,953 cancer patients; 30.4 % reported having discussions about, and 18.9 % took part in, research. Barriers to participation at staff, patient and trust level were evident; for example, staff were less likely to discuss research with older patients, Asian and black patients were less likely to take part and patients treated at specialist or teaching trusts had higher levels of discussion and participation. Interviews showed that patients’ willingness to participate changed over time and was not synonymous with participation as some were ineligible. Conclusion Some patient groups were less likely to have discussions about or participate in research. Analysis of this variation vis-à-vis the composition of the patient population may be useful to ensure that there is equity regarding the potential benefits of research participation and that research findings are applicable to target populations in the translational model

The effects of cancer research participation on patient experience: a mixed-methods analysis.

Patient-reported benefits of research participation have been described by study participants; however, many studies have small sample sizes or are limited to patient groups with poor prognoses. The purpose of this study was to explore the effects of research participation on patient experience using survey responses from a large, national sample of cancer patients (N = 66 462) and interviews with breast cancer patients attending a London trust. Multivariate logistic regression was used to investigate associations between taking part in research and positive patient experience. Based on our analysis, patients who participated in research were more likely to rate their overall care and treatment as 'very good/excellent' (ORadj :1.64, 95%CI: 1.53-1.76, P < 0.001) and to describe positive patient experiences, such as better access to non-standard care, better interactions with staff and being treated as an individual. However, findings from our interviews indicated that there was no common understanding of what constitutes cancer research and no clear delineation between research participation and standard care, from the patient perspective. Further work to explore how participation positively influences patient experience would be useful to develop strategies to improve care and treatment for all patients regardless of whether or not they choose, or have the opportunity, to take part in research

Children in care: Where do children entering care at different ages end up? An analysis of local authority administrative data

Local authorities in England are required to routinely collect administrative data on children in care and cross-sectional analyses of national data are published by central government. This paper explores the usefulness of undertaking a longitudinal analysis of these data at local authority level to determine the care pathways for children entering care, differentiating by age at entry. The sample consisted of 2208 children who entered care in one English local authority over a six-year period, and who were followed up for at least 2 years. A logistic regression model was fitted to explore factors associated with children staying long term in care. Age at entry was a key determinant of where children ended up (return to a parent, special guardianship or residence order, adoption or staying long term in care). Only a minority of entrants (mainly those entering care in their middle years) remained in longer term care. For the vast majority of children, the ‘pre-care family context’ remains important as children will either return to parents or relatives or stay in touch with them. The findings are used to urge service planners to make full use of data on care entrants, especially age at entry, when deciding on the balance between the different placement options needed, and the social work service delivery models

Study protocol: a mixed-methods study to evaluate which health visiting models in England are most promising for mitigating the harms of adverse childhood experiences

Introduction: Exposure to adverse childhood experiences (ACEs) is associated with poorer health outcomes throughout life. In England, health visiting is a long-standing, nationally implemented service that aims to prevent and mitigate the impact of adversity in early childhood, including for children exposed to ACEs. A range of health visiting service delivery practices exist across England (from the minimum five recommended contacts to tailored intensive interventions), but there is a lack of evidence on who receives what services, how this varies across local authorities (LAs) and the associated outcomes. Methods and analysis: This study will integrate findings from analysis of individual-level, deidentified administrative data related to hospital admissions (Hospital Episode Statistics (HES)) and health visiting contacts (Community Services Data Set (CSDS)), aggregate LA-level data, in-depth case studies in up to six LAs (including interviews with mothers), a national survey of health visiting services, and workshops with stakeholders and experts by experience. We will use an empirical-to-conceptual approach to develop a typology of health visiting service delivery in England, starting with a data-driven classification generated from latent class analysis of CSDS-HES data, which will be refined based on all other available qualitative and quantitative data. We will then evaluate which models of health visiting are most promising for mitigating the impact of ACEs on child and maternal outcomes using CSDS-HES data for a cohort of children born on 1 April 2015 to 31 March 2019. Ethics and dissemination: The University College London Institute of Education Research Ethics Committee approved this study. Results will be submitted for publication in a peer-reviewed journal and summaries will be provided to key stakeholders including the funders, policy-makers, local commissioners and families

Stratified, precision or personalised medicine? Cancer services in the 'real world' of a London hospital

We conducted ethnographic research in collaboration with a large research-intensive London breast cancer service in 2013-14 so as to understand the practices and potential effects of stratified medicine. Stratified medicine is often seen as a synonym for both personalised and precision medicine but these three terms, we found, also related to distinct facets of treatment and care. Personalised medicine is the term adopted for the developing 2016 NHS England Strategy, in which breast cancer care is considered a prime example of improved biological precision and better patient outcomes. We asked how this biologically stratified medicine affected wider relations of care and treatment. We interviewed formally 33 patients and 23 of their carers, including healthcare workers; attended meetings associated with service improvements, medical decision-making, public engagement, and scientific developments as well as following patients through waiting rooms, clinical consultations and other settings. We found that the translation of new protocols based on biological research introduced further complications into an already-complex patient pathway. Combinations of new and historic forms of stratification had an impact on almost all patients, carers and staff, resulting in care that often felt less rather than more personal

Exploring the declining rates of state social work intervention in an English local authority using family group conferences

Over the last decade England has seen rising numbers and rates of children in care and subject to child protection intervention. This article draws on national data and quantitative data from a study of ‘City’, a local authority in the north of England with a large Family Group Conference service. In distinction to national trends, City has seen substantial declines in the numbers and rates of children in care and who are subject to child protection intervention. The article analyses how notable these declines may be, comparing the declines with national trends, and exploring six-month service indicators for children who had a Family Group Conference. Implications regarding the reduction of levels of state social work intervention in family life are discussed