Identifying researcher learning needs to develop online training for UK researchers working with administrative data: CENTRIC training

Background The use of administrative data in health and social science research continues to expand, with increased availability of data and interest from funders. Researchers, however, continue to experience delays in access, storage and sharing of administrative data. Training opportunities are limited and typically specific to individual data providers or focussed on the analytical aspects of working with administrative data. The CENTRIC study was funded by the Information Commissioners Office, with the aim of developing a broader training curriculum for researchers working with administrative data in the UK. Methods A mixed-methods design informed curriculum content, including surveys with researchers, focus group discussions with data providers and workshops with members of the public. Researchers were identified from relevant administrative data networks and invited to participate in an online survey identifying training needs. Data providers were approached with a request to input to a face-to-face or online meeting with two members of the research team about their experiences of working with researchers. Data were analysed within the broad framework of the interview schedule, free text responses in the survey were analysed thematically. Results 107 researchers responded to the online survey and four data providers participated in the focus groups. We identified five main themes, relating to research training needs for UK researchers working with administrative data: communication; timelines; changes & amendments; future-proofing applications; and, the availability of training and support. Data providers either provided additional evidence on these learning needs or ways to address identified challenges. Six modules were developed addressing these training needs. Quotes from the survey and focus groups are used anonymously in the online training modules. Conclusion The CENTRIC online training curriculum was launched in September 2020 and is available, free of charge for UK researchers. CENTRIC specifically addresses commonly identified training needs of researchers working with administrative data

The SWIS trial: protocol of a pragmatic cluster randomised controlled trial of school based social work

Background Child and family social workers in the UK work closely with other agencies including schools and the police, and typically they are based in local authority offices. This study will evaluate the effectiveness of placing social workers in schools (SWIS) on the need for social care interventions. SWIS was piloted in three local authorities in 2018–2020, and findings from a feasibility study of the pilots suggests SWIS may operate through three key pathways: (1) by enhancing schools’ response to safeguarding issues, (2) through increased collaboration between social workers, school staff, and parents, and (3) by improving relationships between social workers and young people. Methods The study is a two-arm pragmatic cluster randomised controlled trial building on three feasibility studies which found SWIS to be promising. Social workers will work within secondary schools across local authorities in England. 280 mainstream secondary schools will be randomly allocated with a 1:1 ratio to SWIS or a comparison arm, which will be schools that continue as normal, without a social worker. The primary outcome will be the rate of Child Protection (Section 47) enquiries. Secondary outcomes will comprise rate of referrals to children’s social care, rate of Child in Need (Section 17) assessments, days spent in care, and educational attendance and attainment. The study also includes an economic evaluation, and an implementation and process evaluation. Social care outcomes will be measured in July 2022, and educational outcomes will be measured in July 2023. Days in care will be measured at both time points. Discussion Findings will explore the effectiveness and cost-effectiveness of SWIS on the need for social care interventions. A final report will be published in January 2024

The cost-effectiveness and cost-consequences of a school-based social worker intervention: a within-trial economic evaluation

Schools are a significant source of referrals to Children’s Social Care (CSC) services. A within-trial economic evaluation estimated the cost-effectiveness of embedding social workers in schools in England (SWIS) compared to usual practice. Two hundred and sixty-eight schools comprising 277,888 students were randomised. The primary outcome of the trial was section 47 enquiries (i.e. child protection referrals to CSC services). The economic evaluation estimated the incremental cost-effectiveness of SWIS in reducing section 47 enquiries. Micro-costing approaches assessed the cost of the social worker intervention and addressed variability in key unit costs. Mean differences in costs and outcomes were estimated, with bootstrap 95% confidence intervals and scaling to incidence rate ratios per 1000 students per year. No statistically significant differences between trial arms were identified for any outcomes, costs or cost-effectiveness over a 23-month follow-up. The probability that SWIS is cost-effective was estimated for a range of willingness to pay values. At threshold values of £1000, £10,000 and £20,000 were probabilities for cost-effectiveness were estimated as 1.3%, 1.1% and 6.1%. This means SWIS had a low probability of being cost-effective

Pregnancy and neonatal outcomes in COVID-19: study protocol for a global registry of women with suspected or confirmed SARS-CoV-2 infection in pregnancy and their neonates, understanding natural history to guide treatment and prevention

ntroduction Previous novel COVID-19 pandemics, SARS and middle east respiratory syndrome observed an association of infection in pregnancy with preterm delivery, stillbirth and increased maternal mortality. COVID-19, caused by SARS-CoV-2 infection, is the largest pandemic in living memory. Rapid accrual of robust case data on women in pregnancy and their babies affected by suspected COVID-19 or confirmed SARS-CoV-2 infection will inform clinical management and preventative strategies in the current pandemic and future outbreaks. Methods and analysis The pregnancy and neonatal outcomes in COVID-19 (PAN-COVID) registry are an observational study collecting focused data on outcomes of pregnant mothers who have had suspected COVID-19 in pregnancy or confirmed SARS-CoV-2 infection and their neonates via a web-portal. Among the women recruited to the PAN-COVID registry, the study will evaluate the incidence of: (1) miscarriage and pregnancy loss, (2) fetal growth restriction and stillbirth, (3) preterm delivery, (4) vertical transmission (suspected or confirmed) and early onset neonatal SARS-CoV-2 infection. Data will be centre based and collected on individual women and their babies. Verbal consent will be obtained, to reduce face-to-face contact in the pandemic while allowing identifiable data collection for linkage. Statistical analysis of the data will be carried out on a pseudonymised data set by the study statistician. Regular reports will be distributed to collaborators on the study research questions. Ethics and dissemination This study has received research ethics approval in the UK. For international centres, evidence of appropriate local approval will be required to participate, prior to entry of data to the database. The reports will be published regularly. The outputs of the study will be regularly disseminated to participants and collaborators on the study website (https://pan-covid.org) and social media channels as well as dissemination to scientific meetings and journals

F21 Co-design of a lifestyle intervention to improve quality of life in Huntington's disease

Background Healthy lifestyle behaviours are important in reducing the impact of Huntington’s Disease (HD). However, evidence to date is limited to singular lifestyle domains. The DOMINO-HD project is focussed on understanding the interplay between lifestyle factors in HD through the conduct of a longitudinal observational study in 100 people with HD. Aim The next project stage centres on the development of a personalised, data driven, lifestyle intervention that can be used to improve quality of life and reduce disease burden in people with HD. Firstly, we need to understand fundamental aspects governing intervention development in terms of content, delivery, training and measurement. Methods We will conduct a scoping review to identify physical activity, diet and sleep interventions typically implemented in HD populations. A conceptual synthesis along with a list of statements (for each individual lifestyle domain and any combined domains) describing common intervention components, related outcomes and research design and implementation approaches will be produced. A range of stakeholders (patients, family members and allied health professionals) will be invited to participate in a modified eDelphi process to establish consensus best practice in facilitating feasible lifestyle interventions in HD. Stakeholders will be asked to rank importance of the statements established from the scoping review with due consideration of the emerging DOMINO HD data. A final series of focus groups will be conducted to support the mapping of a lifestyle intervention based on the eDelphi results