In: Alcohol and alcoholism: the international journal of the Medical Council on Alcoholism (MCA) and the journal of the European Society for Biomedical Research on Alcoholism (ESBRA), Band 47, Heft 2, S. 169-177
IntroductionDigital footprint records -- the tracks and traces amassed by individuals as a result of their interactions with the internet, digital devices and services -- can provide ecologically valid data on individual behaviours. These could enhance longitudinal population study databanks; but few UK longitudinal studies are attempting this. When using novel sources of data, study managers must engage with participants in order to develop ethical data processing frameworks that facilitate data sharing whilst safeguarding participant interests. ObjectivesThis paper aims to summarise the participant involvement approach used by the ALSPAC birth cohort study to inform the development of a framework for using linked participant digital footprint data, and provide an exemplar for other data linkage infrastructures. MethodsThe paper synthesises five qualitative forms of inquiry. Thematic analysis was used to code transcripts for common themes in relation to conditions associated with the acceptability of sharing digital footprint data for longitudinal research. ResultsWe identified six themes: participant understanding; sensitivity of location data; concerns for third parties; clarity on data granularity; mechanisms of data sharing and consent; and trustworthiness of the organisation. For cohort members to consider the sharing of digital footprint data acceptable, they require information about the value, validity and risks; control over sharing elements of the data they consider sensitive; appropriate mechanisms to authorise or object to their records being used; and trust in the organisation. ConclusionRealising the potential for using digital footprint records within longitudinal research will be subject to ensuring that this use of personal data is acceptable; and that rigorously controlled population data science benefiting the public good is distinguishable from the misuse and lack of personal control of similar data within other settings. Participant co-development informs the ethical-governance framework for these novel linkages in a manner which is acceptable and does not undermine the role of the trusted data custodian.
This is the final published version. It was first published by Wiley at http://dx.doi.org/10.1111/jcpp.12369 ; BACKGROUND: Many low- and middle-income countries have high levels of violence. Research in high-income countries shows that risk factors in the perinatal period are significant precursors of conduct problems which can develop into violence. It is not known whether the same early influences are important in lower income settings with higher rates of violence. This study compared perinatal and sociodemographic risk factors between Brazil and Britain, and their role in explaining higher rates of conduct problems and violence in Brazil. METHODS: Prospective population-based birth cohort studies were conducted in Pelotas, Brazil (N = 3,618) and Avon, Britain (N = 4,103). Eleven perinatal and sociodemographic risk factors were measured in questionnaires completed by mothers during the perinatal period. Conduct problems were measured in questionnaires completed by mothers at age 11, and violence in self-report questionnaires completed by adolescents at age 18. RESULTS: Conduct problems were predicted by similar risk factors in Brazil and Britain. Female violence was predicted by several of the same risk factors in both countries. However, male violence in Brazil was associated with only one risk factor, and several risk factor associations were weaker in Brazil than in Britain for both females and males. Almost 20% of the higher risk for conduct problems in Brazil compared to Britain was explained by differential exposure to risk factors. The percentage of the cross-national difference in violence explained by early risk factors was 15% for females and 8% for males. CONCLUSIONS: A nontrivial proportion of cross-national differences in antisocial behaviour are related to perinatal and sociodemographic conditions at the start of life. However, risk factor associations are weaker in Brazil than in Britain, and influences in other developmental periods are probably of particular importance for understanding male youth violence in Brazil. ; The 1993 Pelotas Birth Cohort Study is currently supported by the Wellcome Trust through the programme entitled Major Awards for Latin America on Health Consequences of Population Change (Grant: 086974/Z/08/Z). The European Union, National Support Program for Centers of Excellence (PRONEX), the Brazilian National Research Council (CNPq), and the Brazilian Ministry of Health supported previous phases of the study. The UK Medical Research Council and the Wellcome Trust (Grant: 092731) and the University of Bristol provide core support for ALSPAC. Additional support for the data collected at age 18 in this paper was provided by UK Medical Research Council (Grants G0800612 and G0802736).The research for this specific article was funded by the Wellcome Trust (Grant: 089963/Z/09/Z). The authors are extremely grateful to all the families who took part in this study, the midwives for their help in recruiting them, and the whole ALSPAC team, which includes interviewers, computer and laboratory technicians, clerical workers, research scientists, volunteers, managers, receptionists and nurses. Yulia Shenderovich helped prepare the tables. The authors have declared that they have no competing or potential conflicts of interest.
This work was funded by the Medical Research Council as part of the Lifelong Health and Wellbeing study as part of National Core Studies (MC_PC_20030). SVK acknowledges funding from the Medical Research Council (MC_UU_00022/2), and the Scottish Government Chief Scientist Office (SPHSU17). EAVE II is funded by the Medical Research Council (MR/R008345/1) with the support of BREATHE – The Health Data Research Hub for Respiratory Health (MC_PC_19004), which is funded through the UK Research and Innovation Industrial Strategy Challenge Fund and delivered through Health Data Research UK. BG has received research funding from the NHS National Institute for Health Research (NIHR), the Wellcome Trust, Health Data Research UK, Asthma UK, the British Lung Foundation, and the Longitudinal Health and Wellbeing strand of the National Core Studies programme. ; Background Uncontrolled infection and lockdown measures introduced in response have resulted in an unprecedented challenge for health systems internationally. Whether such unprecedented impact was due to lockdown itself and recedes when such measures are lifted is unclear. We assessed the short- and medium-term impacts of the first lockdown measures on hospital care for tracer non-COVID-19 conditions in England, Scotland and Wales across diseases, sexes, and socioeconomic and ethnic groups. Methods We used OpenSAFELY (for England), EAVEII (Scotland), and SAIL Databank (Wales) to extract weekly hospital admission rates for cancer, cardiovascular and respiratory conditions (excluding COVID-19) from the pre-pandemic period until 25/10/2020 and conducted a controlled interrupted time series analysis. We undertook stratified analyses and assessed admission rates over seven months during which lockdown restrictions were gradually lifted. Findings Our combined dataset included 32 million people who contributed over 74 million person-years. Admission rates for all three conditions fell by 34.2% (Confidence Interval (CI): -43.0, -25.3) in England, 20.9% (CI: -27.8, -14.1) in ...
ABSTRACT
ObjectivesThe ELAStiC (Electronic Longitudinal Alcohol Study in Communities) project was established to determine factors that predict pathways into alcohol misuse and the life-course effects of alcohol use and misuse on health and well-being. This is achieved through accessing existing longitudinal data that are key sources of evidence for social and health policy, developing statistical methods and modelling techniques from a diverse range of disciplines, working with stakeholders in both policy, practice and the third sector to bring relevance to the work, and to bring together a diverse team of experts to collaborate and facilitate learning across diverse fields.
ApproachThe project will link data that include cohort studies such as; UK Biobank, ALSPAC (Avon Longitudinal Study of Parents and Children), Millennium Cohort Study, British Household Panel Survey, Understanding Society, E_CATALyST (Caerphilly Health and Social Needs Electronic Cohort Study) and WECC (Wales Electronic Cohort for Children). These data will be linked with routine data from primary and secondary healthcare in England, Scotland and Wales. Additional data from education and police data source will also be linked as part of the project.
The main work packages for the project are:
Methodological InnovationsMethodological developments in mechanisms for correcting bias in reporting alcohol consumption and for combining routine data with cohort data; the application of Markov models for examining the extent to which past behaviour influences future behaviour, and econometric hedonic pricing methods for providing insights into the costs of alcohol-related harm.
Pathways into HarmDo family structure, household composition, youngsters' previous ill-health and educational attainment predict their use of alcohol and what socio-economic factors and household transitions contribute to hazardous alcohol consumption in adults?
Secondary HarmsWhat is the effect on children's health and educational achievement of living in households in which one or more adults has experienced alcohol-related harm?
Mental Health & Well-BeingWhat is the relationship between alcohol consumption, hospital admission and mental health in adults and children?
ResultsThe results of the data linkage between the multiple cohorts and health, education and police data will be reported. The challenges of linking cohort and other data types from different nations will be discussed.
ConclusionsOur project will aim to provide evidence that informs the UK Government's commitment to "radically reshape the approach to alcohol and reduce the number of people drinking to excess", by working with existing longitudinal data collected in the UK to inform policy and practice.
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This analysis is part of the Early Pandemic Evaluation and Enhanced Surveillance of COVID-19 (EAVE II) study. EAVE II is funded by the Medical Research Council (MR/R008345/1) with the support of BREATHE – The Health Data Research Hub for Respiratory Health (MC_PC_19004), which is funded through the UK Research and Innovation Industrial Strategy Challenge Fund and delivered through Health Data Research UK. Additional support has been provided through the Scottish Government DG Health and Social Care. SAS and AS are also supported by the COVID-19 Longitudinal Health and Wellbeing National Core Study, funded by the Medical Research Council (MC_PC_20030). SVK acknowledges funding from a NRS Senior Clinical Fellowship (SCAF/15/02), the Medical Research Council (MC_UU_00022/2) and the Scottish Government Chief Scientist Office (SPHSU17). JM is partly funded by the National Institute for Health Research Applied Research Collaboration West (NIHR ARC West). ; Objectives COVID-19 has resulted in the greatest disruption to National Health Service (NHS) care in its over 70-year history. Building on our previous work, we assessed the ongoing impact of pandemic-related disruption on provision of emergency and elective hospital-based care across Scotland over the first year of the pandemic. Design We undertook interrupted time-series analyses to evaluate the impact of ongoing pandemic-related disruption on hospital NHS care provision at national level and across demographics and clinical specialties spanning the period 29 March 2020?28 March 2021. Setting Scotland, UK. Participants Patients receiving hospital care from NHS Scotland. Main outcome measures We used the percentage change of accident and emergency attendances, and emergency and planned hospital admissions during the pandemic compared to the average admission rate for equivalent weeks in 2018-2019. Results As restrictions were ...