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ObjectiveTo evaluate the extent to which the inter-institutional, inter-disciplinary mobilisation of data and skills in the Farr Institute contributed to establishing the emerging field of data science for health in the UK.Design and outcome measuresWe evaluated evidence of six domains characterising a new field of science:defining central scientific challenges,demonstrating how the central challenges might be solved,creating novel interactions among groups of scientists,training new types of experts,re-organising universities,demonstrating impacts in society.We carried out citation, network and time trend analyses of publications, and a narrative review of infrastructure, methods and tools.SettingFour UK centres in London, North England, Scotland and Wales (23 university partners), 2013-2018.Results1. The Farr Institute helped define a central scientific challenge publishing a research corpus, demonstrating insights from electronic health record (EHR) and administrative data at each stage of the translational cycle in 593 papers with at least one Farr Institute author affiliation on PubMed. 2. The Farr Institute offered some demonstrations of how these scientific challenges might be solved: it established the first four ISO27001 certified trusted research environments in the UK, and approved more than 1000 research users, published on 102 unique EHR and administrative data sources, although there was no clear evidence of an increase in novel, sustained record linkages. The Farr Institute established open platforms for the EHR phenotyping algorithms and validations (>70 diseases, CALIBER). Sample sizes showed some evidence of increase but remained less than 10% of the UK population in primary care-hospital care linked studies. 3.The Farr Institute created novel interactions among researchers: the co-author publication network expanded from 944 unique co-authors (based on 67 publications in the first 30 months) to 3839 unique co-authors (545 papers in the final 30 months). 4. Training expanded substantially with 3 new masters courses, training >400 people at masters, short-course and leadership level and 48 PhD students. 5. Universities reorganised with 4/5 Centres established 27 new faculty (tenured) positions, 3 new university institutes. 6. Emerging evidence of impacts included: > 3200 citations for the 10 most cited papers and Farr research informed eight practice-changing clinical guidelines and policies relevant to the health of millions of UK citizens.ConclusionThe Farr Institute played a major role in establishing and growing the field of data science for health in the UK, with some initial evidence of benefits for health and healthcare. The Farr Institute has now expanded into Health Data Research (HDR) UK but key challenges remain including, how to network such activities internationally.

Laboratory practitioners working in oncology are increasingly involved in implementing genomic medicine, operating at the intersection of the laboratory and the clinic. This includes molecular diagnostic work and molecular testing to direct entry into molecular-based clinical trials and treatment decision-making based on molecular profiling. In this article, we draw on qualitative interviews with laboratory practitioners in the United Kingdom to explore the role of laboratory work in genomic cancer medicine, focusing on the handling of patient tissue and making of potentiality to guide patients' present and future care. With an increase in molecular testing to inform standard care and clinical trial participation, we show how practitioners "potentialized" the tissue by carefully negotiating what to test, how to test, and when. This included maximizing and managing small amounts of tissue in anticipation of possible future patient care. Tissue archives also took on new meaning, and potentiality, which practitioners negotiated alongside patient care. Potentiality was key to generating the "big" future of genomic medicine and also involved care work where the tissue emerged as an extension of the patient, as a form of "material patienthood," to secure present and future care for patients through their involvement in genomic medicine. [ABSTRACT FROM AUTHOR]

Background Preterm-labour-associated preterm birth is a common cause of perinatal mortality and morbidity in twin pregnancy. We aimed to test the hypothesis that the Arabin pessary would reduce preterm-labour-associated preterm birth by 40% or greater in women with a twin pregnancy and a short cervix. Methods and findings We conducted an open-label randomised controlled trial in 57 hospital antenatal clinics in the UK and Europe. From 1 April 2015 to 14 February 2019, 2,228 women with a twin pregnancy underwent cervical length screening between 18 weeks 0 days and 20 weeks 6 days of gestation. In total, 503 women with cervical length [less than or equal to] 35 mm were randomly assigned to pessary in addition to standard care (n = 250, mean age 32.4 years, mean cervical length 29 mm, with pessary inserted in 230 women [92.0%]) or standard care alone (n = 253, mean age 32.7 years, mean cervical length 30 mm). The pessary was inserted before 21 completed weeks of gestation and removed at between 35 and 36 weeks or before birth if earlier. The primary obstetric outcome, spontaneous onset of labour and birth before 34 weeks 0 days of gestation, was present in 46/250 (18.4%) in the pessary group compared to 52/253 (20.6%) following standard care alone (adjusted odds ratio [aOR] 0.87 [95% CI 0.55-1.38], p = 0.54). The primary neonatal outcome-a composite of any of stillbirth, neonatal death, periventricular leukomalacia, early respiratory morbidity, intraventricular haemorrhage, necrotising enterocolitis, or proven sepsis, from birth to 28 days after the expected date of delivery-was present in 67/500 infants (13.4%) in the pessary group compared to 76/506 (15.0%) following standard care alone (aOR 0.86 [95% CI 0.54-1.36], p = 0.50). The positive and negative likelihood ratios of a short cervix ([less than or equal to]35 mm) to predict preterm birth before 34 weeks were 2.14 and 0.83, respectively. A meta-analysis of data from existing publications (4 studies, 313 women) and from STOPPIT-2 indicated that a cervical pessary does not reduce preterm birth before 34 weeks in women with a short cervix (risk ratio 0.74 [95% CI 0.50-1.11], p = 0.15). No women died in either arm of the study; 4.4% of babies in the Arabin pessary group and 5.5% of babies in the standard treatment group died in utero or in the neonatal period (p = 0.53). Study limitations include lack of power to exclude a smaller than 40% reduction in preterm labour associated preterm birth, and to be conclusive about subgroup analyses. Conclusions These results led us to reject our hypothesis that the Arabin pessary would reduce the risk of the primary outcome by 40%. Smaller treatment effects cannot be ruled out. Trial registration ISRCTN Registry ISRCTN 02235181. ClinicalTrials.gov NCT02235181., Author(s): Jane E. Norman 1,*, John Norrie 2, Graeme MacLennan 3, David Cooper 3, Sonia Whyte 4, Sue Chowdhry 5, Sarah Cunningham-Burley 5, Xue W. Mei 6, Joel B. E. [...]

Recent policy responses to the risks entailed in "fast-track" school-work transitions have targeted careleavers and young people identified as "not in education, employment or training" (NEET). However, this approach has been criticised as diverting attention away from the fragile circumstances of others who may receive little parental or service support. We draw on a qualitative study with young people affected by parental substance use to further contribute to this discussion, highlighting the way in which policy constructions of both transitions and parental substance use combine to obscure the fragile circumstances of many of these young people. Notably, policy constructions of parental substance use have focused on young children rather than young people. Consequently, many young people whose family circumstances were not identified while they were young children face unsupported transitions without service or family support. We argue that policy construction should take a broader, longer-term perspective in both areas: moving forward towards transitions in the case of parental substance use, while also recognising the continuing effects of previous gaps in social support provision in the case of transitions policy. We further illustrate how policy construction in all areas may benefit from listening to young people themselves. (Contains 1 table and 14 notes.)

Concern is increasing about children growing up in families where there are substance use problems but relatively little is known about the perspectives of the children themselves. This article reports on a qualitative study with young people who grew up in such families, exploring their accounts of their daily lives at home, school and leisure. The study focuses on the everyday interactions, practices and processes the young people felt helped them to "get by" in their challenging childhoods, showing how the protective factors thought to promote "resilience" were seldom in place for them unconditionally and without associated costs.