scholarly journals Using data journeys to inform research design: Socio-cultural dynamics of patient data flows in the UK healthcare sector

Author(s):  
Itzelle Aurora Medina Perea ◽  
Jo Bates ◽  
Andrew Cox
2020 ◽  
Vol 21 (1) ◽  
Author(s):  
Ruth Horn ◽  
Angeliki Kerasidou

Abstract Background In the UK, the solidaristic character of the NHS makes it one of the most trusted public institutions. In recent years, the introduction of data-driven technologies in healthcare has opened up the space for collaborations with private digital companies seeking access to patient data. However, these collaborations appear to challenge the public’s trust in the. Main text In this paper we explore how the opening of the healthcare sector to private digital companies challenges the existing social contract and the NHS’s solidaristic character, and impacts on public trust. We start by critically discussing different examples of partnerships between the NHS and private companies that collect and use data. We then analyse the relationship between trust and solidarity, and investigate how this relationship changes in the context of digital companies entering the healthcare system. Finally, we show ways for the NHS to maintain public trust by putting in place a solidarity grounded partnership model with companies seeking to access patient data. Such a model would need to serve collective interests through, for example, securing preferential access to goods and services, providing health benefits, and monitoring data access. Conclusion A solidarity grounded partnership model will help establish a social contract or licence that responds to the public’s expectations and to principles of a solidaristic healthcare system.


2021 ◽  
Vol 66 (Special Issue) ◽  
pp. 91-91
Author(s):  
Ruth Horn ◽  
◽  
Angeliki Kerasidou ◽  
◽  
◽  
...  

"In the UK, the solidaristic character of the NHS makes it one of the most trusted public institutions. In recent years, the introduction of data-driven technologies in healthcare has opened up the space for collaborations with private digital companies seeking access to patient data. However, these collaborations appear to challenge the public’s trust in the healthcare system. In this paper we explore how the opening of the healthcare sector to private digital companies challenges the existing social contract and the NHS’s solidaristic character, and impacts on public trust. We start by critically discussing different examples of partnerships between the NHS and private companies that collect and use data. We then analyse the relationship between trust and solidarity, and investigate how this relationship changes in the context of digital companies entering the healthcare system. Finally, we show ways for the NHS to maintain public trust by putting in place a solidarity grounded partnership model with companies seeking to access patient data. Such a model would need to serve collective interests through, for example, securing preferential access to goods and services, providing health benefits, and monitoring data access. A solidarity grounded partnership model will help establish a social contract or licence that responds to the public’s expectations and to principles of a solidaristic healthcare system. "


Author(s):  
Francois-Xavier Ageron ◽  
Timothy J. Coats ◽  
Vincent Darioli ◽  
Ian Roberts

Abstract Background Tranexamic acid reduces surgical blood loss and reduces deaths from bleeding in trauma patients. Tranexamic acid must be given urgently, preferably by paramedics at the scene of the injury or in the ambulance. We developed a simple score (Bleeding Audit Triage Trauma score) to predict death from bleeding. Methods We conducted an external validation of the BATT score using data from the UK Trauma Audit Research Network (TARN) from 1st January 2017 to 31st December 2018. We evaluated the impact of tranexamic acid treatment thresholds in trauma patients. Results We included 104,862 trauma patients with an injury severity score of 9 or above. Tranexamic acid was administered to 9915 (9%) patients. Of these 5185 (52%) received prehospital tranexamic acid. The BATT score had good accuracy (Brier score = 6%) and good discrimination (C-statistic 0.90; 95% CI 0.89–0.91). Calibration in the large showed no substantial difference between predicted and observed death due to bleeding (1.15% versus 1.16%, P = 0.81). Pre-hospital tranexamic acid treatment of trauma patients with a BATT score of 2 or more would avoid 210 bleeding deaths by treating 61,598 patients instead of avoiding 55 deaths by treating 9915 as currently. Conclusion The BATT score identifies trauma patient at risk of significant haemorrhage. A score of 2 or more would be an appropriate threshold for pre-hospital tranexamic acid treatment.


Open Heart ◽  
2021 ◽  
Vol 8 (1) ◽  
pp. e001600
Author(s):  
Joanne Kathryn Taylor ◽  
Haarith Ndiaye ◽  
Matthew Daniels ◽  
Fozia Ahmed

AimsIn response to the COVID-19 pandemic, the UK was placed under strict lockdown measures on 23 March 2020. The aim of this study was to quantify the effects on physical activity (PA) levels using data from the prospective Triage-HF Plus Evaluation study.MethodsThis study represents a cohort of adult patients with implanted cardiac devices capable of measuring activity by embedded accelerometery via a remote monitoring platform. Activity data were available for the 4 weeks pre-implementation and post implementation of ‘stay at home’ lockdown measures in the form of ‘minutes active per day’ (min/day).ResultsData were analysed for 311 patients (77.2% men, mean age 68.8, frailty 55.9%. 92.2% established heart failure (HF) diagnosis, of these 51.2% New York Heart Association II), with comorbidities representative of a real-world cohort.Post-lockdown, a significant reduction in median PA equating to 20.8 active min/day was seen. The reduction was uniform with a slightly more pronounced drop in PA for women, but no statistically significant difference with respect to age, body mass index, frailty or device type. Activity dropped in the immediate 2-week period post-lockdown, but steadily returned thereafter. Median activity week 4 weeks post-lockdown remained significantly lower than 4 weeks pre-lockdown (p≤0.001).ConclusionsIn a population of predominantly HF patients with cardiac devices, activity reduced by approximately 20 min active per day in the immediate aftermath of strict COVID-19 lockdown measures.Trial registration numberNCT04177199.


Author(s):  
Zhiqiang Sha ◽  
Dick Schijven ◽  
Amaia Carrion-Castillo ◽  
Marc Joliot ◽  
Bernard Mazoyer ◽  
...  

AbstractLeft–right hemispheric asymmetry is an important aspect of healthy brain organization for many functions including language, and it can be altered in cognitive and psychiatric disorders. No mechanism has yet been identified for establishing the human brain’s left–right axis. We performed multivariate genome-wide association scanning of cortical regional surface area and thickness asymmetries, and subcortical volume asymmetries, using data from 32,256 participants from the UK Biobank. There were 21 significant loci associated with different aspects of brain asymmetry, with functional enrichment involving microtubule-related genes and embryonic brain expression. These findings are consistent with a known role of the cytoskeleton in left–right axis determination in other organs of invertebrates and frogs. Genetic variants associated with brain asymmetry overlapped with those associated with autism, educational attainment and schizophrenia. Comparably large datasets will likely be required in future studies, to replicate and further clarify the associations of microtubule-related genes with variation in brain asymmetry, behavioural and psychiatric traits.


2021 ◽  
pp. 105566562110196
Author(s):  
Alex Davies ◽  
Amy Davies ◽  
Yvonne Wren ◽  
Scott Deacon ◽  
Alistair R.M. Cobb ◽  
...  

Objective: The mainstay of palatal repair in the United Kingdom is the intravelar veloplasty (IVVP). It is not always possible to align the oral mucosa in the midline to achieve tension-free repair. The addition of lateral relieving incisions may aid transposition of the oral mucosa to allow closure. The aim of this study was to explore cleft features that may predispose to a requirement for relieving incisions in order to allow palate closure. Design: We performed a national multiinstitutional retrospective study using data from the UK Cleft Collective cohort study. Patients: The study sample consisted of 474 patients who had undergone IVVP at the time of palatal closure across all 16 of the UK cleft units. Results: We found strong evidence for the requirement for relieving incisions in patients with an increased degree of clefting per the Veau classification ( P < .001), increasing palatal soft-edge width ( P < .001) and moderate evidence of an associated use in patients with Pierre Robin sequence ( P = .015). Insufficient data were available to explore the relationship between intertuberosity distance and the presence of fistula formation with the use of relieving incisions. Conclusions: The results of this study identify cleft features that increase the likelihood for requiring lateral relieving incisions to allow palatal closure. The degree to which the addition of relieving incisions to IVVP affects maxillary growth and speech outcomes is unknown. Further study is required to answer this important question.


Author(s):  
Ron Johnston ◽  
Charles Pattie

The funding of political parties is an issue of considerable contemporary concern in the UK. Although most attention has been paid to the situation regarding national parties, the new funding regime introduced in 2001 also applies to constituency parties, and some concerns have been raised regarding the limits on spending and expenditure there. Using data released by the Electoral Commission on all donations above a specified minimum to constituency parties, this article looks at the pattern of donations over the period 2001–05. It then analyses the impact of spending on the 2005 constituency campaigns, showing that for the Conservatives and Liberal Democrats substantial donations enhanced their vote-winning performances in seats where their candidates were challengers whereas for Labour substantial donations aided its performance in marginal seats that it was defending.


Heart ◽  
2018 ◽  
Vol 104 (22) ◽  
pp. 1864-1870 ◽  
Author(s):  
Dan M Dorobantu ◽  
Alireza S Mahani ◽  
Mansour T A Sharabiani ◽  
Ragini Pandey ◽  
Gianni D Angelini ◽  
...  

ObjectivesTreatment of infants with tetralogy of Fallot (ToF) has evolved in the last two decades with increasing use of primary surgical repair (PrR) and transcatheter right ventricular outflow tract palliation (RVOTd), and fewer systemic-to-pulmonary shunts (SPS). We aim to report contemporary results using these treatment options in a comparative study.MethodsThis a retrospective study using data from the UK National Congenital Heart Disease Audit. All infants (n=1662, median age 181 days) with ToF and no other complex defects undergoing repair or palliation between 2000 and 2013 were considered. Matching algorithms were used to minimise confounding due to lower age and weight in those palliated.ResultsPatients underwent PrR (n=1244), SPS (n=311) or RVOTd (n=107). Mortality at 12 years was higher when repair or palliation was performed before the age of 60 days rather than after, most significantly for primary repair (18.7% vs 2.2%, P<0.001), less so for RVOTd (10.8% vs 0%, P=0.06) or SPS (12.4% vs 8.3%, P=0.2). In the matched groups of patients, RVOTd was associated with more right ventricular outflow tract (RVOT) reinterventions (HR=2.3, P=0.05 vs PrR, HR=7.2, P=0.001 vs SPS) and fewer pulmonary valve replacements (PVR) (HR=0.3 vs PrR, P=0.05) at 12 years, with lower mortality after complete repair (HR=0.2 versus PrR, P=0.09).ConclusionsWe found that RVOTd was associated with more RVOT reinterventions, fewer PVR and fewer deaths when compared with PrR in comparable, young infants, especially so in those under 60 days at the time of the first procedure.


2002 ◽  
Vol 11 (2) ◽  
pp. 27-53 ◽  
Author(s):  
Henrietta O'Connor ◽  
John Goodwin

Irish migrant workers still make a significant contribution to the UK labour force, but this contribution is confined to particular occupation and industry groups. This paper begins with a brief review of the literature on Irish workers employment and an argument is developed that the work of Irish-born people in Britain is still both racialised and gendered. Then, using data from the UK Quarterly Labour Force Survey (QLFS), the work experiences of over one thousand Irish-born people in the UK are explored. The findings suggest that Irish-born men and women still work in the stereotyped occupations of the past. For example, most women work in public administration and health while twenty six per cent of men work in construction. The majority of Irish-born men work in manual skilled or unskilled jobs. The paper concludes that there has been no real qualitative change in the way that Irish-born workers experience employment in the UK.


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