Navigating data governance associated with real-world data for public benefit: an overview in the UK and future considerations

Real-world data encompass data primarily captured for the provision or operation of services, for example, electronic health records for direct care purposes, but which may have secondary uses for informing research or commissioning. Public benefit is potentially forfeited by the underutilisation of real-world data for secondary uses, in part due to risk aversion when faced with the prospect of navigating necessary and important data governance processes. Such processes can be perceived as complex, daunting, time-consuming and exposing organisations to risk. By providing an overview description and discussion around the role of six key legal and information governance frameworks and their role regarding responsible data access, linkage and sharing, our intention is to make data governance a less daunting prospect and reduce the perception that it is a barrier to secondary uses, thus enabling public benefit

Primary care services co-located with Emergency Departments across a UK region: early views on their development

Background Co-location of primary care services with Emergency Departments (ED) is one initiative aiming to reduce the burden on EDs of patients attending with non-urgent problems. However, the extent to which these services are operating within or alongside EDs is not currently known. This study aimed to create a typology of co-located primary care services in operation across Yorkshire and Humber (Y&H) as well as identify early barriers and facilitators to their implementation and sustainability. Methods A self-report survey was sent to the lead consultant or other key contact at 17 EDs in the Y&H region to establish the extent and configuration of co-located primary care services. Semi-structured interviews were then conducted with urgent and unscheduled care stakeholders across five hospital sites to explore the barriers and facilitators to the formation and sustainability of these services. Results Thirteen EDs completed the survey and interviews were carried out with four ED consultants, one ED nurse and three general practitioners (GPs). Three distinct models were identified: ‘Primary Care Services Embedded within the ED’ (seven sites), ‘Co-located Urgent Care Centre’ (two sites) and ‘GP out-of-hours’ (nine sites). Qualitative data were analysed using framework analysis. Four interview themes emerged (justification for the service, level of integration, referral processes and sustainability) highlighting some of the challenges in implementing these co-located primary care services. Conclusion Creating a service within or alongside the ED in which GPs can use their distinct skills and therefore add value to the existing skill mix of ED staff is an important consideration when setting up these systems. Effective triage arrangements should also be established to ensure appropriate patients are referred to GPs. Further research is required to identify the full range of models nationally and to carry out a rigorous assessment of their impact

Dismantling institutional racism: theory and action

Despite a strong commitment to promoting social change and liberation, there are few community psychology models for creating systems change to address oppression. Given how embedded racism is in institutions such as healthcare, a significant shift in the system's policies, practices, and procedures is required to address institutional racism and create organizational and institutional change. This paper describes a systemic intervention to address racial inequities in healthcare quality called dismantling racism. The dismantling racism approach assumes healthcare disparities are the result of the intersection of a complex system (healthcare) and a complex problem (racism). Thus, dismantling racism is a systemic and systematic intervention designed to illuminate where and how to intervene in a given healthcare system to address proximal and distal factors associated with healthcare disparities. This paper describes the theory behind dismantling racism, the elements of the intervention strategy, and the strengths and limitations of this systems change approach.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/116935/1/ajcp9117.pd

Comparison of early and late depression after TBI; (the SHEFBIT study)

OBJECTIVE: Evaluate the prevalence and risk factors for depression at 1 year after traumatic brain injury (TBI) and contrast against those at 10 weeks. METHODS: Prospective TBI admissions over 2 years to an emergency department were recruited to form a representative TBI population. Depression was recorded at 10 weeks and 1 year by HADS (Hospital Anxiety and Depression Scale) with score>8. Demographic and injury features were analyzed for association with depression. RESULTS: A total of 774 individuals were recruited of whom 690 attended  1-year follow-up; 38 had died. Only 6% of the cohort was lost to follow-up. The prevalence of depression at 10 weeks was 56.3% [95% CI 52.8-59.8] and at 1 year 41.2% [95% CI 37.6-44.9] A multivariable analysis identified the independent predictors of 1 year depression as an abnormal CT scan, past psychiatric history, alcohol intoxication, and female gender. TBI severity, age, etiology, and medical comorbidity were not significant. By contrast at 10weeks, increasing severity and CT findings were highly significant. CONCLUSIONS: Depression at 1 year post-TBI remains high but injury features are less predictive than early after injury. It is likely that pre-injury personality and coping mechanisms are more important in determining long term outcome. The predictors identified may allow targeting of vulnerable sub-populations

The impact of digital technology in care homes on unplanned secondary care usage and associated costs.

BackgroundA substantial number of Emergency Department (ED) attendances by care home residents are potentially avoidable. Health Call Digital Care Homes is an app-based technology that aims to streamline residents’ care by recording their observations such as vital parameters electronically. Observations are triaged by remote clinical staff. This study assessed the effectiveness of the Health Call technology to reduce unplanned secondary care usage and associated costs.MethodsA retrospective analysis of health outcomes and economic impact based on an intervention. The study involved 118 care homes across the North East of UK from 2018 to 2021. Routinely collected NHS secondary care data from County Durham and Darlington NHS Foundation Trust was linked with data from the Health Call app. Three outcomes were modelled monthly using Generalised Linear Mixed Models: counts of emergency attendances, emergency admissions and length of stay of emergency admissions. A similar approach was taken for costs. The impact of Health Call was tested on each outcome using the models.FindingsData from 8,702 residents were used in the analysis. Results show Health Call reduces the number of emergency attendances by 11% [6–15%], emergency admissions by 25% [20–39%] and length of stay by 11% [3–18%] (with an additional month-by-month decrease of 28% [24–34%]). The cost analysis found a cost reduction of £57 per resident in 2018, increasing to £113 in 2021.InterpretationThe introduction of a digital technology, such as Health Call, could significantly reduce contacts with and costs resulting from unplanned secondary care usage by care home residents

Direct in-gel fluorescence detection and cellular imaging of O-GlcNAc-modified proteins

We report an advanced chemoenzymatic strategy for the direct fluorescence detection, proteomic analysis, and cellular imaging of O-GlcNAc-modified proteins. O-GlcNAc residues are selectively labeled with fluorescent or biotin tags using an engineered galactosyltransferase enzyme and [3 + 2] azide−alkyne cycloaddition chemistry. We demonstrate that this approach can be used for direct in-gel detection and mass spectrometric identification of O-GlcNAc proteins, identifying 146 novel glycoproteins from the mammalian brain. Furthermore, we show that the method can be exploited to quantify dynamic changes in cellular O-GlcNAc levels and to image O-GlcNAc-glycosylated proteins within cells. As such, this strategy enables studies of O-GlcNAc glycosylation that were previously inaccessible and provides a new tool for uncovering the physiological functions of O-GlcNAc

Support and Assessment for Fall Emergency Referrals (SAFER 1) trial protocol. Computerised on-scene decision support for emergency ambulance staff to assess and plan care for older people who have fallen: evaluation of costs and benefits using a pragmatic cluster randomised trial

Background: Many emergency ambulance calls are for older people who have fallen. As half of them are left at home, a community-based response may often be more appropriate than hospital attendance. The SAFER 1 trial will assess the costs and benefits of a new healthcare technology - hand-held computers with computerised clinical decision support (CCDS) software - to help paramedics decide who needs hospital attendance, and who can be safely left at home with referral to community falls services. Methods/Design: Pragmatic cluster randomised trial with a qualitative component. We shall allocate 72 paramedics ('clusters') at random between receiving the intervention and a control group delivering care as usual, of whom we expect 60 to complete the trial. Patients are eligible if they are aged 65 or older, live in the study area but not in residential care, and are attended by a study paramedic following an emergency call for a fall. Seven to 10 days after the index fall we shall offer patients the opportunity to opt out of further follow up. Continuing participants will receive questionnaires after one and 6 months, and we shall monitor their routine clinical data for 6 months. We shall interview 20 of these patients in depth. We shall conduct focus groups or semi-structured interviews with paramedics and other stakeholders. The primary outcome is the interval to the first subsequent reported fall (or death). We shall analyse this and other measures of outcome, process and cost by 'intention to treat'. We shall analyse qualitative data thematically. Discussion: Since the SAFER 1 trial received funding in August 2006, implementation has come to terms with ambulance service reorganisation and a new national electronic patient record in England. In response to these hurdles the research team has adapted the research design, including aspects of the intervention, to meet the needs of the ambulance services. In conclusion this complex emergency care trial will provide rigorous evidence on the clinical and cost effectiveness of CCDS for paramedics in the care of older people who have fallen

Multiple triangulation and collaborative research using qualitative methods to explore decision making in pre-hospital emergency care.

BACKGROUND: Paramedics make important and increasingly complex decisions at scene about patient care. Patient safety implications of influences on decision making in the pre-hospital setting were previously under-researched. Cutting edge perspectives advocate exploring the whole system rather than individual influences on patient safety. Ethnography (the study of people and cultures) has been acknowledged as a suitable method for identifying health care issues as they occur within the natural context. In this paper we compare multiple methods used in a multi-site, qualitative study that aimed to identify system influences on decision making. METHODS: The study was conducted in three NHS Ambulance Trusts in England and involved researchers from each Trust working alongside academic researchers. Exploratory interviews with key informants e.g. managers (n = 16) and document review provided contextual information. Between October 2012 and July 2013 researchers observed 34 paramedic shifts and ten paramedics provided additional accounts via audio-recorded 'digital diaries' (155 events). Three staff focus groups (total n = 21) and three service user focus groups (total n = 23) explored a range of experiences and perceptions. Data collection and analysis was carried out by academic and ambulance service researchers as well as service users. Workshops were held at each site to elicit feedback on the findings and facilitate prioritisation of issues identified. RESULTS: The use of a multi-method qualitative approach allowed cross-validation of important issues for ambulance service staff and service users. A key factor in successful implementation of the study was establishing good working relationships with academic and ambulance service teams. Enrolling at least one research lead at each site facilitated the recruitment process as well as study progress. Active involvement with the study allowed ambulance service researchers and service users to gain a better understanding of the research process. Feedback workshops allowed stakeholders to discuss and prioritise findings as well as identify new research areas. CONCLUSION: Combining multiple qualitative methods with a collaborative research approach can facilitate exploration of system influences on patient safety in under-researched settings. The paper highlights empirical issues, strengths and limitations for this approach. Feedback workshops were effective for verifying findings and prioritising areas for future intervention and research

Overexpression of Mcl-1 exacerbates lymphocyte accumulation and autoimmune kidney disease in lpr mice

Cell death by apoptosis has a critical role during embryonic development and in maintaining tissue homeostasis. In mammals, there are two converging apoptosis pathways: the ‘extrinsic’ pathway, which is triggered by engagement of cell surface ‘death receptors’ such as Fas/APO-1; and the ‘intrinsic’ pathway, which is triggered by diverse cellular stresses, and is regulated by prosurvival and pro-apoptotic members of the Bcl-2 family of proteins. Pro-survival Mcl-1, which can block activation of the proapoptotic proteins, Bax and Bak, appears critical for the survival and maintenance of multiple haemopoietic cell types. To investigate the impact on haemopoiesis of simultaneously inhibiting both apoptosis pathways, we introduced the vavP-Mcl-1 transgene, which causes overexpression of Mcl-1 protein in all haemopoietic lineages, into Faslpr/lpr mice, which lack functional Fas and are prone to autoimmunity. The combined mutations had a modest impact on myelopoiesis, primarily an increase in the macrophage/monocyte population in Mcl-1tg/lpr mice compared with lpr or Mcl-1tg mice. The impact on lymphopoiesis was striking, with a marked elevation in all major lymphoid subsets, including the non-conventional double-negative (DN) T cells (TCRβ+ CD4– CD8– B220+ ) characteristic of Faslpr/lpr mice. Of note, the onset of autoimmunity was markedly accelerated in Mcl-1tg/lpr mice compared with lpr mice, and this was preceded by an increase in immunoglobulin (Ig)-producing cells and circulating autoantibodies. This degree of impact was surprising, given the relatively mild phenotype conferred by the vavP-Mcl-1 transgene by itself: a two- to threefold elevation of peripheral B and T cells, no significant increase in the non-conventional DN T-cell population and no autoimmune disease. Comparison of the phenotype with that of other susceptible mice suggests that the development of autoimmune disease in Mcl-1tg/lpr mice may be influenced not only by Ig-producing cells but also other haemopoietic cell types