UK Data Archive Research Articles

Sexual identity data collection and access in UK population-based studies

Sexual identity data collection and access in UK population-based studies

The financial maintenance of social science data archives: Four case studies of long‐term infrastructure work

AbstractContributing to the literature on knowledge infrastructure maintenance, this article describes a historical longitudinal analysis of revenue streams employed by four social science data organizations: the Roper Center for Public Opinion, the Inter‐university Consortium for Political and Social Research (ICPSR), the UK Data Archive (UKDA), and the LIS Cross‐National Data Center in Luxembourg (LIS). Drawing on archival documentation and interviews, we describe founders' assumptions about revenue, changes to revenue streams over the long term, practices for developing and maintaining revenue streams, the importance of financial support from host organizations, and how the context of each data organization shaped revenue possibilities. We extend conversations about knowledge infrastructure revenue streams by showing the types of change that have occurred over time and how it occurs. We provide examples of the types of flexibility needed for data organizations to remain sustainable over 40–60 years of revenue changes. We distinguish between Type A flexibilities, or development of new products and services, and Type B flexibilities, or continuous smaller adjustments to existing revenue streams. We argue that Type B flexibilities are as important as Type A, although they are easily overlooked. Our results are relevant to knowledge infrastructure managers and stakeholders facing similar revenue challenges.

Intimate Physical Contact between People from Different Households During the COVID-19 Pandemic: A Mixed-Methods Study from a Large, Quasi-Representative Survey (Natsal-Covid)

Background: Physical distancing aims to reduce interactions between people to prevent SARS-CoV-2 transmission. Intimate physical contact outside the household (IPCOH) may expand transmission networks by connecting households. We explored whether intimacy needs impacted adherence to physical distancing following lockdown in Britain in March 2020. Methods: The Natsal-COVID web-panel survey (July-August 2020) used quota-sampling and weighting to achieve a quasi-representative population sample. We estimated IPCOH with a romantic/sexual partner in the four weeks prior to interview and identified associated factors. Qualitative interviews (n=18) were conducted to understand the context, reasons, and decision-making around IPCOH. Findings: Of 6,654 participants aged 18-59 years, 9.9% (95%CI:9.1-10.6%) reported IPCOH. IPCOH was highest in those aged 18-24 (17.7%), identifying as gay or lesbian (19.5%), and in steady non-cohabiting relationships (56.3%). IPCOH was associated with reporting risk behaviours (e.g., condomless sex, higher alcohol consumption). IPCOH was less likely among those reporting bad/very bad health (aOR 0.54;0.32-0.93) but more likely among those with COVID-19 symptoms and/or diagnosis (aOR 1.34;1.10-1.65). Two-thirds (64.4%) of IPCOH was reported as being within a support bubble. Qualitative interviews found that people reporting IPCOH deliberated over, and made efforts to mitigate, the risks. Interpretation: Given 90% of people did not report IPCOH, this contact may not be a large additional contributor to SARS-CoV-2 transmission, although heterogeneity exists within the population. Public health messages need to recognise how single people and partners living apart balance sexual intimacy and relationship needs with adherence to control measures. Funding Information: Natsal (Wellcome/ESRC/NIHR), MRC/CSO, and UCL COVID-19 Rapid Response Fund. Declaration of Interests: The other authors declare that they have no conflicts of interest. Ethics Approval Statement: Ethical approval was obtained from the University of Glasgow MVLS College (reference 20019174) and LSHTM research ethics committees (reference 22565). An anonymised dataset will be deposited with the UK Data Archive.

Knowing what to do and how to do it: High transparency and careful curation of data and metadata

Knowing what to do and how to do it: High transparency and careful curation of data and metadata

The Emerging Adults Gambling Survey: study protocol

The Emerging Adults Gambling Survey is a longitudinal survey of young adults aged 16-24 living in Great Britain. It aims to explore a range of gambling behaviours and harms among young adults and examine how this changes over time. It is part of a broader project funded by Wellcome into the gambling behaviours of young people and its relationship with technological change. Funding is currently available for two waves of data collection: the first collected in June/August 2019 (n=3549) and the second to be collected in June/August 2020. The second wave of data collection will also obtain information about the immediate impact of coronavirus on gambling behaviours. With a sample size of 3549 for Wave 1, this is one of the largest study of gambling behaviours among young adults to be conducted in Great Britain and is a resource for other researchers to draw on. Data will be deposited in the UK Data Archive upon completion of Wave 2 data collection and analysis. This protocol is intended to support other researchers to use this resource by setting out the study design and methods.

The Emerging Adults Gambling Survey: study protocol.

The Emerging Adults Gambling Survey is a longitudinal survey of young adults aged 16-24 living in Great Britain. It aims to explore a range of gambling behaviours and harms among young adults and examine how this changes over time. It is part of a broader project funded by Wellcome into the gambling behaviours of young people and its relationship with technological change. Funding is currently available for two waves of data collection: the first collected in June/August 2019 (n=3549) and the second to be collected in June/August 2020. The second wave of data collection will also obtain information about the immediate impact of coronavirus on gambling behaviours. With a sample size of 3549 for Wave 1, this is one of the largest study of gambling behaviours among young adults to be conducted in Great Britain and is a resource for other researchers to draw on. Data will be deposited in the UK Data Archive upon completion of Wave 2 data collection and analysis. This protocol is intended to support other researchers to use this resource by setting out the study design and methods.

The Life Cycle of Structural Biology Data

Research data is acquired, interpreted, published, reused, and sometimes eventually discarded. Understanding this life cycle better will help the development of appropriate infrastructural services, ones which make it easier for researchers to preserve, share, and find data. Structural biology is a discipline within the life sciences, one that investigates the molecular basis of life by discovering and interpreting the shapes and motions of macromolecules. Structural biology has a strong tradition of data sharing, expressed by the founding of the Protein Data Bank (PDB) in 1971. The culture of structural biology is therefore already in line with the perspective that data from publicly funded research projects are public data. This review is based on the data life cycle as defined by the UK Data Archive. It identifies six stages: creating data, processing data, analysing data, preserving data, giving access to data, and re-using data. For clarity, ʻpreserving dataʼ and ʻgiving access to dataʼ are discussed together. A final stage to the life cycle, ʻdiscarding dataʼ, is also discussed. The review concludes with recommendations for future improvements to the IT infrastructure for structural biology.

Research data management in academic institutions: A scoping review.

ObjectiveThe purpose of this study is to describe the volume, topics, and methodological nature of the existing research literature on research data management in academic institutions.Materials and methodsWe conducted a scoping review by searching forty literature databases encompassing a broad range of disciplines from inception to April 2016. We included all study types and data extracted on study design, discipline, data collection tools, and phase of the research data lifecycle.ResultsWe included 301 articles plus 10 companion reports after screening 13,002 titles and abstracts and 654 full-text articles. Most articles (85%) were published from 2010 onwards and conducted within the sciences (86%). More than three-quarters of the articles (78%) reported methods that included interviews, cross-sectional, or case studies. Most articles (68%) included the Giving Access to Data phase of the UK Data Archive Research Data Lifecycle that examines activities such as sharing data. When studies were grouped into five dominant groupings (Stakeholder, Data, Library, Tool/Device, and Publication), data quality emerged as an integral element.ConclusionMost studies relied on self-reports (interviews, surveys) or accounts from an observer (case studies) and we found few studies that collected empirical evidence on activities amongst data producers, particularly those examining the impact of research data management interventions. As well, fewer studies examined research data management at the early phases of research projects. The quality of all research outputs needs attention, from the application of best practices in research data management studies, to data producers depositing data in repositories for long-term use.

Depression in young adults with chronic somatic illness – An analysis of 1970 British Cohort Study

The prevalence rate of depression occurring in people with somatic illnesses is 3 times more than people without somatic illnesses, but less research was conducted in this respect for people with early onset of somatic disease. Taking into account that the presence of depression in chronic patients aggravates the somatic disease, leading to a poor prognosis and higher rates of mortality it is important to detect and treat it. The purposes of our study are to analyze in a large cohort (BCS-70) the risk of depression in patients with somatic illness at early ages (less or equal 30 years). Methods. Data used in our paper were drawn from the 1970 British Cohort Study (BCS70). The design and conduct of this study have been described elsewhere (1). Data for the present paper are drawn from 30 years wave. The data were analyzed with descriptive function, chi-square and logistic regression. All analyses were performed using SPSS 16. Results. At age 30, we have found 1409 people (12.7%) with depression. From a total of 11211 people there are 860 people with hypertension (7.7%) and 109 people with diabetes (1%). There is an increased risk of depression in the case of people with „pure” hypertension or „pure” diabetes (p<0.05). In the case of people with both hypertension and diabetes, logistic regression showed that hypertension is a risk factor for depression irrespective of socio-economic status and diabetes (Exp(B)=1.970, CI=1.579-2.458, p=.001). Conclusion. The above data indicate that risk of depression is higher in people with onset before 30 years old of hypertension and/or diabetes. Our study did not identify an increased risk for depression by socio economic class. Data of our study clearly suggests that it is extremely important that young patients with somatic diseases like diabetes and/or hypertension should be aggressively screened and treated for depression. 1. Butler NR, Golding J, Howlett BC. From Birth to Five: A Study of the Health and Behaviour of a National Cohort. Oxford: Pergamon,1985. Bynner J, Butler N, Ferri E, et al. The design and conduct of the 1999–2000 surveys of the National Child Development Study and the 1970 British Cohort Study. UK Data Archive In: CLS Cohort Studies Working Paper 1. London: Centre for Longitudinal Studies, Institute of Education, University of London, 2000.

Natural Language Search Interfaces: Health Data Needs Single-Field Variable Search.

BackgroundData discovery, particularly the discovery of key variables and their inter-relationships, is key to secondary data analysis, and in-turn, the evolving field of data science. Interface designers have presumed that their users are domain experts, and so they have provided complex interfaces to support these “experts.” Such interfaces hark back to a time when searches needed to be accurate first time as there was a high computational cost associated with each search. Our work is part of a governmental research initiative between the medical and social research funding bodies to improve the use of social data in medical research.ObjectiveThe cross-disciplinary nature of data science can make no assumptions regarding the domain expertise of a particular scientist, whose interests may intersect multiple domains. Here we consider the common requirement for scientists to seek archived data for secondary analysis. This has more in common with search needs of the “Google generation” than with their single-domain, single-tool forebears. Our study compares a Google-like interface with traditional ways of searching for noncomplex health data in a data archive.MethodsTwo user interfaces are evaluated for the same set of tasks in extracting data from surveys stored in the UK Data Archive (UKDA). One interface, Web search, is “Google-like,” enabling users to browse, search for, and view metadata about study variables, whereas the other, traditional search, has standard multioption user interface.ResultsUsing a comprehensive set of tasks with 20 volunteers, we found that the Web search interface met data discovery needs and expectations better than the traditional search. A task × interface repeated measures analysis showed a main effect indicating that answers found through the Web search interface were more likely to be correct (F 1,19=37.3, P<.001), with a main effect of task (F 3,57=6.3, P<.001). Further, participants completed the task significantly faster using the Web search interface (F 1,19=18.0, P<.001). There was also a main effect of task (F 2,38=4.1, P=.025, Greenhouse-Geisser correction applied). Overall, participants were asked to rate learnability, ease of use, and satisfaction. Paired mean comparisons showed that the Web search interface received significantly higher ratings than the traditional search interface for learnability (P=.002, 95% CI [0.6-2.4]), ease of use (P<.001, 95% CI [1.2-3.2]), and satisfaction (P<.001, 95% CI [1.8-3.5]). The results show superior cross-domain usability of Web search, which is consistent with its general familiarity and with enabling queries to be refined as the search proceeds, which treats serendipity as part of the refinement.ConclusionsThe results provide clear evidence that data science should adopt single-field natural language search interfaces for variable search supporting in particular: query reformulation; data browsing; faceted search; surrogates; relevance feedback; summarization, analytics, and visual presentation.

Europejskie archiwa danych jakościowych

This article concerns the archiving of qualitative data in Europe. Its aim is to present selected models of archivization of this type of material in various European institutions, including the British ESCS (Economic and Social Data Service Qualidata) belonging to the UK Data Archive, the Austrian WISDOM (Wiener Institut für Sozialwissenschaftliche Dokumentation und Methodik), the Irish IQDA (Irish Qualitative Data Archive), the German ALLF (Archiv für Lebenslaufforschung), or the OSA (Open Society Archives) operating in the Hungarian Academy of Sciences in Budapest. The examples mentioned give rise to reflections on the need, potential, and limitations of conducting a similar project in Poland. The author discusses the results of the ‘Interpretive Research into Life Styles: Digitalization, Archivization, and Methodological Revisitation’ pilot project and the Archive of Qualitative Data pilot project of the Institute of Philosophy and Sociology of the Polish Academy of Sciences.

A88 Young driver crash rates in Great Britain: trends and comparisons between countries

Abstract Background Trends in young driver (YD) crashes are difficult to interpret, as are variations between YD and older driver (OD) crash rates. This is partly due to difficulties with identifying an appropriate denominator. Population profiles do not account for those who do and do not drive and survey data are subject to biases. Driver licensing data are not routinely available in appropriate age groupings. Specific aim To calculate YD and OD crash rates, using driver licensing data, for analysis of trends and comparison between countries. Methods Police road traffic crash data for 2000 to 20013 were obtained from the UK data archive and, using methods developed previously (Jones et al., 2012), used to calculate the numbers of crashes in England, Scotland, Wales and GB in which YD (aged 17 to 19 years) and OD (20+ years). Annual driver licensing data were obtained, through a Freedom of Information (FOI) request for 17 to 19 year olds, 20 to 22 year olds, 23 to 25 year olds etc for 2000 to 2013 for England, Scotland and Wales. Three year rolling average crash rates were calculated for YD and OD. A rate ratio for YD to OD crash rates, along with 95% confidence intervals, was calculated. Results For Great Britain, YD crash rates dropped by 61.4% between 2000-02 and 2011-13, from 42.1 per 1000 to 16.2. For OD, the drop was 45.1%, from 6.5 to 3.6. The inequalities gap narrowed significantly, from 6.5 (95%CI 6.41 to 6.59) in 2000-02 to 4.6 (95%CI 4.47 to 4.66) in 2011-13. In 2011 to 2013, YD crash rates in England were 16.4, 14.8 in Scotland and 15.9 in Wales, but the only significant difference in rates was between England and Scotland (difference 1.6, 96%CI 0.4 to 2.7). Analysis of inequalities found that in England, YD crash rates were 4.4 times higher than OD (95%CI 4.26 to 4.45), 5.4 times higher in Scotland (95%CI 5.05 to 5.86) and 5.7 times higher in Wales (95%CI 5.24 to 6.19). Conclusions Young driver crash rates are declining and although they are doing so more rapidly than older driver crash rates, the inequalities gap between the two groups is still large. The UK Government promised a Green Paper on Young Drivers in January 2013, but postponed the production of this indefinitely in December 2013. Urgent action is needed if these inequalities are to be addressed and the burden of road traffic crashes, injuries and deaths on health and health services is to be reduced.

A89 Girls crash too: trends and comparisons between male and female young driver crash rates in Great Britain

Abstract Background Road traffic crashes involving young drivers (YD) are often assumed to be due to ‘boy racers’, but there is little recent epidemiological data available to support this idea. This is, in part, due to a lack of analysis of crash rates. Specific Aim To calculate and compare single vehicle crash rates for male and female, YD (17 to 19 years) and OD (20+ years), using driver licensing data. Methods Police road traffic crash data for 2000 to 20013 were obtained from the UK data archive and, used to analyse single vehicle crashes in England, Scotland, Wales and GB. Three year rolling average single vehicle crash rates were calculated. Rate ratios for YD to OD crash rates, along with 95% confidence intervals, were calculated, along with rate ratios and 95%CI for male YD v female YD. Results Male and female YD crash rates declined between 2000 and 2013, with male rates always higher than females. The gap between males and females narrowed significantly. In 2000-02, male rates were 15.0 per 1000, female rates 5.7; a rate ratio of 2.6 times (95%CI 2.47 to 2.81). By 2011-13, male rates were just 5.2, female rates 3.5; rate ratio 1.5 times (95%CI 1.38 to 1.62). While the inequalities between male YD and OD have narrowed significantly, from 6.1 times (95%CI 5.90 to 6.29) to 3.9 times (95%CI 3.74 to 4.12), because of the more rapid decrease in male YD crash rates, there has been no change in female YD and OD inequalities (2000-02 RR 5.4, 95%CI 5.11 to 5.75; 2011-13 RR 5.7, 95%CI 5.31 to 6.04); factors influencing male YD crash rates had little or no effect on female crash rates. Conclusions Crash rates for males and females, YD and OD have decreased considerably since 2000. However, the relative impact of crashes on females has changed less than it has for males. This may be due to the perception that YD crashes are a male problem leading to interventions being targeted preferentially at males. This was important when male rates were considerably higher than those of females, but now, more universal approaches are needed. These data lend further support to the call for Graduated Driver Licensing; a universal young driver intervention that has been shown to be effective in reducing crash rates.

What do we know about fruit and vegetable consumption in the UK? Trends from the National Diet and Nutrition Survey Rolling Programme (NDNS RP)

Increased fruit and vegetable (FV) consumption is a public health nutrition priority. NDNS provides the only source of representative data on diet, nutrient intakes and nutritional status for the UK population. Combined data from the first 4 years of NDNS RP enables extensive characterisation of FV consumption patterns including distribution by age, sex, time and income. Also, disaggregation of FV from composite dishes provides improved estimates for total intake in relation to the UK's “5‐a‐day” public health target.We have shown that whilst overall FV consumption falls below 5‐a‐day, the proportion meeting the target increases with age. Exploratory analysis also shows that consumption of 4 portions/day is more frequently achieved (16‐56%), however a large proportion of the population still falls below this. In the under‐65y population, FV consumption is significantly lower in all age/sex groups with the lowest income compared with those with highest income.This work highlights the relevance of tracking FV consumption in population nutrition surveillance. Identification of groups where consumption is particularly low enables targeted public health nutrition initiatives and continuous monitoring of impact. Disaggregated FV data also provides opportunities to further investigate health effects through more refined information on consumption patterns and eating habits which is important for refining such initiatives. The NDNS datasets offer potential for robust comparisons of the UK's FV consumption with other countries. Table 1: Comparison of disaggregation and non‐disaggregation methods of calculating “5‐a‐day” FV portions for NDNS Years 1‐4 (2008‐12); comparison with non‐disaggregated results from NDNS of adults 19 to 64 years (2000‐01). Age group (years) and sex Boys Men Girls Women 11‐18 19‐64 65+ 11‐18 19‐64 65+ NDNS Years 1‐4 (2008‐2012): Disaggregation method Number of portions 3.0 4.1 4.7 2.8 4.1 4.6 % achieving 5‐a‐day 11 30 40 7 30 41 NDNS Years 1‐4 (2008‐2012): Non‐disaggregation method Number of portions 2.6 3.4 3.7 2.6 3.5 3.6 % achieving 5‐a‐day 9 18 19 6 17 19 NDNS of adults aged 19‐64 years (2000‐01): Non‐disaggregation method Number of portions ‐ 2.7 ‐ ‐ 2.9 ‐ % achieving 5‐a‐day ‐ 14 ‐ ‐ 15 ‐ NDNS RP methods and headline results are published via web‐based reports and data are available via the UK Data Archive.

Assessing the quality of life of children with sickle cell anaemia using self-, parent-proxy, and health care professional-proxy reports.

The quality of life (QoL) of children with sickle cell anaemia (SCA) in the United Kingdom has not been examined, and a discrepancy measure based on Gap theory has rarely been used. This study investigated whether (1) child self-reports of QoL using a discrepancy measure (the Generic Children's QoL Measure; GCQ) are lower than those from healthy children, (2) proxy reports from parents and health care professionals are lower than child self-reports, and (3) demographic and disease severity indicators are related to QoL. An interdependent groups, cross-sectional design was implemented. Seventy-four children with SCA, their parent, and members of their health care team completed the GCQ. Demographic and disease severity indicators were recorded. GCQ data from healthy children were obtained from the UK Data Archive. Contrary to past research, when examining generic discrepancy QoL, children with SCA did not report a lower QoL than healthy children, and parent- and health care professional-proxy reports were not lower than child self-reports. Few of the demographic and disease severity indicators were related to QoL. Proxy reports may be used to gain a more complete picture of QoL, but should not be a substitute for self-reports. The explanation for the relatively high levels of QoL reported is not clear, but children with SCA may have realistic expectations about their ideal-self, place greater emphasis on aspects other than health in shaping their QoL, and define achievements within the limits of their illness. Future research should focus on psychological factors in explaining QoL. Statement of contribution What is already known on this subject? Children with sickle cell disease (SCD) generally have a reduced QoL compared with healthy children, but there appears to be no research measuring QoL in paediatric SCD in the United Kingdom. Proxy QoL reports from parents are often lower than child self-reports, but there is less research examining proxy reports from health care professionals. Previous research has measured paediatric QoL using measures of current health-related QoL, but this is not in line with the WHO's definition of QoL as the discrepancy between current state and expectations. What does this study add? Children with Sickle cell anaemia do not have an impaired discrepancy QoL; they may have realistic expectations about their ideal-self and define achievements within the limits of their illness. Health care professionals are able to gauge a SCA child's discrepancy QoL better than parents. The GCQ (a generic discrepancy measure of QoL) takes into account expectations about ideal QoL and does not emphasize health; it may be of use to Psychologists working with SCA children.

UK National Diet and Nutrition (NDNS) Survey: ad‐hoc cross‐sectional survey to sustainable Rolling Programme (RP) for surveillance (Y6‐9 2013‐17) (LB467)

NDNS provides the only authoritative source of representative data on dietary habits and nutritional status (plus routine metabolic and CVD risk data) for the UK population. Following the first dietary and nutritional survey of British adults (1986/87), NDNS operated as a series of stand‐alone cross‐sectional surveys by age group (pre‐school, young people, adults, older adults). After government review, it moved to a cross‐sectional RP model in 2008 for more rapid data generation, greater ability to track temporal changes and to respond to policy needs. Now funded to 2017, 500 adults and 500 children are sampled each year. Along with boosted samples in Scotland, Wales and Northern Ireland, this enables in‐depth analysis using combined data years and trend data every 2‐3 years. An estimated 4 day food diary was determined to be low burden and cost‐effective compared to the 24H Recall and replaced the previous 7 day weighed diary as the measure of dietary intake for the RP. As in past NDNS, blood and urine samples are analysed and stored for future research. NDNS remains unique in the inclusion of a doubly‐labelled water sub‐study as an objective biomarker to validate energy intake estimated from reported food consumption. Combined results for NDNS RP 2008‐12 will be published in 2014/15. NDNS data provide robust assessment of nutritional deficiency or excess at different stages of life in the UK population, progress against health recommendations/targets and exposure monitoring. Methods and headline results are published via web‐based reports; data are available via UK Data Archive. NDNS is carried out by NatCen Social Research, Medical Research Council Human Nutrition Research and University college London. UK health departments fund NDNS and the complementary UK sodium (salt) surveys and Dietary Survey of Infants and Young Children.Grant Funding Source: “Supported by” the UK Department of Health and the UK Food Standards Agency

Segmenting the betting market in England

While there are a number of studies focusing on the motivations for betting, less is known about the extent to which the market is segmented. This study investigates patterns of cross-purchasing using a sample of 7,200 adult respondents from a government survey dataset obtained via the UK Data Archive. In doing so, we apply market research techniques to a social research domain, and demonstrate the usefulness of publicly available government survey data to (social) market researchers. While we find some patterns of cross-purchase that are broadly the same as would be predicted by the duplication of purchase law, we also identify clear partitions in the market, implying the existence of behavioural segments. We identify five distinct behavioural segments, each with its own demographic characteristics. Our results have implications for the managers of betting companies, and for the design of future studies into gambling behaviour that could potentially inform public policy.

PP41 Alcohol-Related ‘risk Factors’ Predict Under-Reporting of Alcohol Consumption more than Socio-Demographic Factors: Evidence from a Mixed-Methods Study

BackgroundUnder-reporting of alcohol consumption is widespread: surveys typically capture only 40-60% of alcohol sales. Little is known about the population distribution of under-reporting.MethodsThis study uses mixed methods to identify social,...

OP01 Did Health Inequality Increase in English Children and Young People between 1999 and 2009? Evidence from two Cross-Sectional Surveys and Inpatient Activity Data

BackgroundFrom 1999, the English government pursued a systematic strategy to reduce health inequalities. For interventions affecting children and young people, intermediate indicators may be more useful for evaluating short/medium term...

A critical appraisal of ethical sedative use for dying patients: comparative ethnographic study of three palliative care units

Background and aimThe frequency and indications of use of drugs with sedative effect, for example, midazolam, for dying patients has been widely explored. Some authors have sought empirical evidence to...