Conducting sexualities research: an outline of emergent issues and case studies from ten Wellcome-funded projects

This letter seeks to synthesise methodological challenges encountered in a cohort of Wellcome Trust-funded research projects focusing on sexualities and health. The ten Wellcome Trust projects span a diversity of gender and sexual orientations and identities, settings; institutional and non-institutional contexts, lifecourse stages, and explore a range of health-related interventions. As researchers, we originate from a breadth of disciplinary traditions, use a variety of research methods and data sources. Despite this breadth, four common themes are found across the projects: (i) inclusivity, representations and representativeness, (ii) lumping together of diverse groups, (iii) institutions and closed settings (iv) ethical and governance barriers

Bibliometric Analysis to Scan and Scrape New Datasets: It’s all about that BASS

Objectives The main objective of this poster is to present a pilot project in determining emerging population health themes and identifying key research-enabling datasets ahead of time. At present, large-scale databanks, such as the Secure Anonymised Information Linkage (SAIL) Databank at Swansea University Medical School, already manage large quantities of health and administrative linked datasets. While these datasets are valuable for research purposes, complementary datasets may be required by collaborating researchers to answer detailed population health research questions. Dataset acquisition can take several years, which is a serious delay to a project with time-limited funding. The ability to pre-emptively acquire datasets so that these are ready for use before a researcher requests them would obviously be beneficial. However, a recent study conducted by the Farr Cipher team at Swansea University identified over 800 health and administrative datasets in Wales alone. With limited resources such as available funding and time, which of these datasets is worth its effort in acquiring? ApproachBibliometrics has long been a means of measuring the impact of papers on the wider academic community. Lately, the focus of analyses has been extended to include the topics, authorship and citations of the publications. Existing bibliometric data mining techniques suggest that it is possible to identify emerging topic trends and through this assist in prioritising dataset identification and acquisition. The project explored mining available literature through bibliometric analysis in order to predict emerging trends and through these identify potentially relevant and valuable datasets for acquisition on behalf of the Dementias Platform UK (DPUK). Literature searches were conducted for papers published on the topic of “dementia” over the last 20 years. Additional keywords and topics were extracted to identify emerging areas of research and clinical interest. These were then compared against an existing list of over 800 Welsh datasets currently not held in SAIL. ResultsResults focus on: • Using bibliometric methods in the context of DPUK cohort publications • Identifying emerging trends in the field of dementia research. • Identifying and prioritising datasets which might be useful for the SAIL Databank to acquir

The Good, the Bad, the Clunky and . . . the Outcomes

Background There are there are considerable challenges to be addressed so the benefits of administrative data for research can be realised. Significant headway is being made, but there is great scope and appetite for further improvement. Objectives This study set out to explore good practice, barriers and bottlenecks in effective administrative data use, and to gain suggestions on how to share the good, solve the bad and improve the clunky issues. Methods Using the ESRC-funded UK Administrative Data Research Network (ADRN) as the case study, a qualitative survey, focusing on the data use pathway, was carried out across the network. This encompassed a set of 18 questions spanning from acquisition to archiving. Survey responses were grouped into six themes: data acquisition; approval processes; controls on access and disclosure; data and metadata; researcher support; and data reuse and retention. The resulting information matrix was presented to participants at the All Hands meeting (April-May 2017) to facilitate discussion. Findings Survey responses were received from across the network (N=27) and 95 people took part in the workshop. The combined information from the survey and workshop was used to inform set of 18 recommendations across the 6 themes, and this has been used by the ADRN directors to develop an action plan for implementation. Conclusions The ADRN has broken new ground in overcoming many challenges in using administrative data for research in the UK. The recommendations and action plan show how further improvements will be made in the ADRCs, and the findings of this study are relevant more widely to other organisations working with administrative data

Mining academic publications to automatically identify data sources

Background Discovering suitable datasets is an important part of health research, particularly for projects working with cohort data, but with the proliferation of so many national and international initiatives, it is becoming increasingly difficult for research teams to locate real world datasets that are most relevant to their project objectives. Methods To assist researchers in this, we developed bibInsight, a data analysis platform to identify potentially useful data sources and more generally enable large scale research over bibliographical datasets. Data source names were identified from a broad, topic specific literature search. Context-specific terms like “annual”, “longitudinal”, and “prospective” were used to train a classifier that identified potential datasets. Results The classifier was able to identify 1588 of 1961 abstracts as containing cohort-relevant information: a precision of approximately 80%. Further analysis such as topic analysis, geographical mapping, and collaboration networks can refine and prioritise the search results to determine the most relevant data source(s) for a research project. Conclusions A very large amount of information, including data source description and use, remains unexploited in unstructured bibliographical datasets. Here, we used a thematic search to provide a more manageable starting point towards locating disease specific datasets

Welsh Government Flying Start Programme Evaluation Using Linked Data

Introduction Flying Start (FS) is the Welsh Government’s (WG) flagship Early Years programme for families with children aged less than 4 years of age. Running since 2006, the four entitlements are: • Free part-time childcare for 2-3 year olds • Enhanced Health Visiting • Parenting support • Speech, language, and communication support Objectives and Approach Currently, while we know which areas in Wales are receiving FS support, individual-level data on which child received what entitlements is not available. This means that area-level outcomes can be used as proxy indicators but the individual impact of receiving FS support cannot be examined. This project describes the issues around collecting individual-level data in deprived Welsh regions, a pilot project to facilitate this collection and will report some emerging findings from the analysis of pilot data. Results Following from previous studies funded by the ESRC and WG (e.g. Supporting People Data Linking Feasibility Study), a Dataflow Development Project (DDP) has been launched to install Secure Anonymised Information Linkage (SAIL) appliances into 6 pilot Local Authorities in Wales. The SAIL appliance technology will provide Local Authorities with the ability to link individual-level data within a Local Authority or between Local Authorities and to securely anonymise data into the SAIL Databank or ADRC-W. The DDP will test acquiring the individual level FS data from pilot Local Authorities into SAIL. The project aims to evaluate FS by linking the FS cohort to a range of outcomes including health, education and social care. We will report emerging findings from the analysis of pilot data. Conclusion/Implications There is grow interest in using linked administrative data to evaluate government initiatives, and mounting enthusiasm in Local Government. If successful, this model is likely to be adopted by related WG programmes; improving the evidence base, facilitating effective evaluation, and adding to the data available for re-use in Wales

The Good, the Bad, the Clunky

Introduction Administrative data arising via the operation of public service delivery systems hold great benefits for citizens and society providing they can be made available for research in a safe, socially-acceptable way. In recognition of this potential, the UK Administrative Data Research Network was established in 2013 to enable new research for public benefit. However, there are considerable challenges to be overcome for effective data use, and many of these are common to administrative data enterprises in general. Using this network as a practical case study, we set out to explore the challenges, and to share the ‘good’, suggest solutions to the ‘bad’, and improve the ‘clunky’ issues. Methods A qualitative survey replicating the data use pathway was carried out across the network, followed by a workshop to discuss the summarised findings and make further suggestions. This led to a set of recommendations to inform the development of an action plan for implementation. Results The survey respondents (N=27) and workshop participants (N=95) comprised multi‑disciplinary staff from across the network. The responses were summarised by consensus of three researchers and grouped into six areas: A) Data acquisition pathway; B) Approval processes; C) Controls on access & disclosure; D) Data and metadata; E) Researcher support; and F) Data reuse & retention, leading to an embedded set of 18 recommendations. Key developments promoted by this study were the development of themed research partnerships to progress data acquisition, and a policy of data retention and reuse for research. Conclusion The network has broken new ground in using administrative data for research. This study has enabled the development of an evidence-based action plan to address many challenges in the effective use of administrative data. It represents a practical worked example, widely relevant to enterprises working with administrative data across the world. Keywords Administrative data research, data access, data linkag

Lung Recruitment Strategies During High Frequency Oscillatory Ventilation in Preterm Lambs

Background: High frequency oscillatory ventilation (HFOV) is considered a lung protective ventilation mode in preterm infants only if lung volume is optimized. However, whilst a “high lung volume strategy” is advocated for HFOV in preterm infants this strategy is not precisely defined. It is not known to what extent lung recruitment should be pursued to provide lung protection. In this study we aimed to determine the relationship between the magnitude of lung volume optimization and its effect on gas exchange and lung injury in preterm lambs.Methods: 36 surfactant-deficient 124–127 d lambs commenced HFOV immediately following a sustained inflation at birth and were allocated to either (1) no recruitment (low lung volume; LLV), (2) medium- (MLV), or (3) high lung volume (HLV) recruitment strategy. Gas exchange and lung volume changes over time were measured. Lung injury was analyzed by post mortem pressure-volume curves, alveolar protein leakage, gene expression, and histological injury score.Results: More animals in the LLV developed a pneumothorax compared to both recruitment groups. Gas exchange was superior in both recruitment groups compared to LLV. Total lung capacity tended to be lower in the LLV group. Other parameters of lung injury were not different.Conclusions: Lung recruitment during HFOV optimizes gas exchange but has only modest effects on lung injury in a preterm animal model. In the HLV group aiming at a more extensive lung recruitment gas exchange was better without affecting lung injury

Religious affiliation and the risk of COVID 19 related mortality; a retrospective analysis of variation in pre and post lockdown risk by religious group in England and Wales

AbstractBackgroundCOVID 19 mortality risk is associated with demographic and behavioural factors; furthermore religious gatherings have been linked with the spread of COVID. We sought to understand the variation in the risk of COVID 19 related death across religious groups in the UK both before and after lockdown.MethodsWe conducted a retrospective cohort study of usual residents in England and Wales enumerated at the 2011 Census (n = 48,422,583), for risk of death involving COVID-19 using linked death certificates. Cox regression models were estimated to compare risks between religious groups. Time dependent religion coefficients were added to the model allowing hazard ratios (HRs) pre and post lockdown period to be estimated separately.ResultsCompared to Christians all religious groups had an elevated risk of death involving COVID-19; the largest age adjusted HRs were for Muslim and Jewish males at 2.5 (95% confidence interval 2.3-2.7) and 2.1 (1.9-2.5), respectively. The corresponding HRs for Muslim and Jewish females were 1.9 (1.7-2.1) and 1.5 (1.7-2.1). The difference in risk between groups contracted after lockdown. Those who affiliated with no religion had the lowest risk of COVID 19 related death before and after lockdown.ConclusionThe majority of the variation in COVID 19 mortality risk was explained by controlling for socio demographic and geographic determinants; however, Jews remained at a higher risk of death compared to all other groups. Lockdown measures were associated with reduced differences in COVID 19 mortality rates between religious groups, further research is required to understand the causal mechanisms.</jats:sec

Childhood asthma prevalence: cross-sectional record linkage study comparing parent-reported wheeze with general practitioner-recorded asthma diagnoses from primary care electronic health records in Wales

Introduction Electronic health records (EHRs) are increasingly used to estimate the prevalence of childhood asthma. The relation of these estimates to those obtained from parent-reported wheezing suggestive of asthma is unclear. We hypothesised that parent-reported wheezing would be more prevalent than general practitioner (GP)-recorded asthma diagnoses in preschool-aged children. Methods 1529 of 1840 (83%) Millennium Cohort Study children registered with GPs in the Welsh Secure Anonymised Information Linkage databank were linked. Prevalences of parent-reported wheezing and GP-recorded asthma diagnoses in the previous 12 months were estimated, respectively, from parent report at ages 3, 5, 7 and 11 years, and from Read codes for asthma diagnoses and prescriptions based on GP EHRs over the same time period. Prevalences were weighted to account for clustered survey design and non-response. Cohen’s kappa statistics were used to assess agreement. Results Parent-reported wheezing was more prevalent than GP-recorded asthma diagnoses at 3 and 5 years. Both diminished with age: by age 11, prevalences of parent-reported wheezing and GP-recorded asthma diagnosis were 12.9% (95% CI 10.6 to 15.4) and 10.9% (8.8 to 13.3), respectively (difference: 2% (−0.5 to 4.5)). Other GP-recorded respiratory diagnoses accounted for 45.7% (95% CI 37.7 to 53.9) and 44.8% (33.9 to 56.2) of the excess in parent-reported wheezing at ages 3 and 5 years, respectively. Conclusion Parent-reported wheezing is more prevalent than GP-recorded asthma diagnoses in the preschool years, and this difference diminishes in primary school aged children. Further research is needed to evaluate the implications of these differences for the characterisation of longitudinal childhood asthma phenotypes from EHRs