Managing and exploiting routinely collected NHS data for research

In England, care homes are the primary providers of long-term care for older adults. The increasing recognition of the importance of social care underscores the importance of collaboration between the National Health Service and care homes. The lack of data sharing among stakeholders limits opportunities for co-ordinated care, service development and research. Identify how to support research, service development and innovation in care homes. Combine existing evidence with care home-generated resident data to create a minimum data set that is relevant and usable for stakeholders, including residents, relatives, practitioners, researchers, regulators and commissioners. The study used a mixed-methods approach, structured into five work packages, supported by patient and public involvement and engagement with residents, carers and staff: Work package 1: Conducted two evidence reviews on outcome measures and factors enhancing research productivity in care homes. Work package 2: Created a trial archive for secondary data analysis. Work package 3: Conducted a scoping review, a realist review and a national survey to define minimum data set content and assess implementation challenges in English care homes. Work package 4: Linked residents' data from National Health Service and social care data sets with data from study care homes, deriving useful minimum data set variables and assessing data quality. Work package 5: Piloted the minimum data set at two points in care homes within three integrated care systems, conducted focus groups and interviews with care home and integrated care system staff. Three national consultations explored how stakeholders use resident information, measure quality of life and minimum data set usefulness. Additionally, subprojects examined data availability in domiciliary settings, staff reasoning when assessing resident well-being and completing research during rapid policy changes. The reviews revealed significant heterogeneity in outcome measurement and questioned the appropriateness of some methods and measures used for care home research. The Virtual International Care Home Trials Archive merged data from 6 United Kingdom randomised controlled trials with 5674 residents across 308 care homes. International minimum data set studies are a valuable resource for international comparative research. The wide range of measures used are mostly clinical with under-representation of measures important to care homes (e.g. quality of life). A national survey of care homes demonstrated the range of information, including clinical measures being routinely collected. The realist review identified motivation, front-line staff monitoring and embedded recording systems as important for minimum data set implementation. The pilot study recruited 996 residents from 45 care homes, with 727 residents' data included in the minimum data set. Residents' digital care records were linked to statutory health and social care data sets, creating a viable minimum data set prototype with metadata as resource. The study provided an evidence-based critique of care home research and a resource for secondary data analysis for future research. It developed a prototype minimum data set linking National Health Service, social care and care home data, demonstrating its importance as a basis for discussions between health and care staff. The COVID-19 pandemic disrupted relationships and recruitment. Governance challenges prevented linking residents' data to general practitioner records. Future research should assess whether the care home minimum data set improves resident outcomes, service delivery, staff experience, cross-sector collaboration, resource use and digital technology implementation. This synopsis presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR127234.

Sharing patients' records to boost medical research

IntroductionThe ability to utilize the electronic health record (EHR) without compromising the doctor-patient relationship (DPR) is an essential skill of all physicians and trainees, yet little time is spent on educating or assessing learners on needed techniques. To address this gap, we developed a conventional OSCE station coupled with a simulated patient chart within the Epic program in order to assess our students' skills utilizing the EHR during a patient encounter.MethodsOf third-year medical students, 119 were given full access to the patient's simulated chart 24 hours in advance of their OSCE to review clinical data. During an in-person OSCE with a standardized patient (SP), students performed a focused history and physical, using the EHR to verify allergies and medications. Students completed an electronic patient note graded by faculty. SPs evaluated the students on communication and interpersonal skills with specific rubric elements. Faculty graded the students' notes to evaluate their expression of clinical reasoning in the assessment and plan.ResultsTraining SPs and faculty to assess students on EHR skills was feasible. After implementation of a comprehensive curriculum focused on EHR and DPR, there was a significant difference on EHR-related communication skills (M = 76.4, SD = 17.6) versus (M = 37, SD = 28.9) before curriculum enhancement t (117.9) = −12.4, p <.001.DiscussionThe EHR OSCE station provided a standardized method of assessing students' EHR skills during a patient encounter. Challenges still exist in the technological requirements to develop and deliver cases in today's EHR platform.

Pulmonary embolism following ankle fractures treated without an operation – An analysis using National Health Service data

In this paper, we explain our strategy for developing research data management policies at TU Delft. Policies can be important drivers for research institutions in the implementation of good data management practices. As Rans and Jones note (Rans and Jones 2013), “Policies provide clarity of purpose and may help in the framing of roles, responsibilities and requisite actions. They also legitimise making the case for investment”. However, policy development often tends to place the researchers in a passive position, while they are the ones managing research data on a daily basis. Therefore, at TU Delft, we have taken an alternative approach: a policy needs to go hand in hand with practice. The policy development was initiated by the Research Data Services at TU Delft Library, but as the process continued, other stakeholders, such as legal and IT departments, got involved. Finally, the faculty-based Data Stewards have played a key role in leading the consultations with the research community that led to the development of the faculty-specific policies. This allows for disciplinary differences to be reflected in the policies and to create a closer connection between policies and day-to-day research practice. Our primary intention was to keep researchers and research practices at the centre of our strategy for data management. We did not want to introduce and mandate requirements before adequate infrastructure and professional support were available to our research community and before our researchers were themselves willing to discuss formalisation of data management practices. This paper describes the key steps taken and the most important decisions made during the development of RDM policies at TU Delft.

The availability of anonymized data is a keystone of medical research, yet little is known about lay views towards the process of anonymization or on the way that anonymized medical data are transferred to researchers. During May and June 2009, as part of a wider consultation on methods for releasing data to researchers, three focus groups (n = 19) were conducted exploring lay attitudes towards the traditional 'warehouse' model commonly used in medical research for delivering anonymized National Health Service (NHS) data to researchers. The focus groups explored different processes such as the copying of data, use of programmers for linkage and anonymization, the transfer of data and governance. The recognition of the positive aspects of medical research and desire to support it formed the context for discussions. Nonetheless, individuals varied in their attitudes to the use of anonymized data extracts for research from their health records (without consent); although some appeared positive wanted to be asked to consent for this use. Furthermore, participants were acutely aware of security breaches of NHS information nevertheless, they continued to display a high level of trust in NHS staff. Participants were concerned about the practicalities of the warehouse model and relied on their own life experiences to make sense of the model (using analogies with 'banks' or 'libraries'). The general attitude towards the processes underlying the warehouse model might best be captured by the term 'ambivalence'. This research (1) offers unique insights into views of anonymization of health data extracts, how it is undertaken and data are transferred and (2) adds to an increasing body of work that demonstrates that a minority of individuals are concerned about consent, even when data are anonymized although (3) those concerned about anonymization do not necessarily seek resolution through gaining consent.

Long-term outcomes for patients at high risk of death after surgery in the UK: a retrospective cohort study.

The lethality from acute myocardial infarction (AMI) is reduced considerably by the kliest possible thrombolytic treatment. Our aim was to evaluate the use of electrocardiograms (ECGs) by general practitioners (GPs) in Denmark with respect to beginning thrombolytic treatment of AMI before admission to hospital. Based on National Health Service data, the number of ECGs performed in 150 Danish general practices was analysed. Additionally all GPs who used ECG had a telepho ne interview. ECGs were performed in 79 % of practices. Of the GPs who used ECG, 76% had a transportable ECG machine. The level of ECG activity was defined as the number of ECGs per 1 00 consultations per year. The ECG-activity increased significantly with increasing work-load in single practices and with the size of practice in partnership practices, but it did not depend on other activities in general. At least 63 % of the GPs were positive towards a possible pre-hospital treatment given by GPs. In summary, the indications for th...

This case series study provides an estimate of total cases of metastatic breast cancer in England based on National Health Service data.

BackgroundUK “Pathway” teams offer specialist hospital care coordination for people experiencing homelessness. Emergency healthcare use is high among homeless people, yet “homelessness” is not routinely coded in National Health Service (NHS) data. Pathway team records provide an opportunity to assess patterns in admissions and outcomes for inpatients identified as homeless.MethodsRetrospective analysis of patients referred to “Pathway” homelessness teams in seven UK hospitals to explore the patterns of hospital admission, morbidity, secondary healthcare utilisation and housing status. Each patient was individually identified as experiencing homelessness. Within a six-month period, demographic data, reason for admission, morbidity, mortality and secondary care hospital usage 120-days before and 120-days after the index admission was collected.ResultsA total of 1009 patients were referred, resulting in 1135 admissions. Most admissions had an acute physical health need (94.9%). Co-morbid mental illness and/or substance misuse was common (55.7%). Reasons for admission included mental and behavioral disorders (overdose, alcohol withdrawal or depression, 28.3%), external causes of morbidity and mortality (assault or trauma, 18.7%), and injury, poisoning and external causes (head injury, falls and fractures, 12.4%). Unplanned Emergency Department attendances reduced after index admission and unplanned hospital admissions increased slightly. Planned admissions doubled and total bed days increased. Housing status was maintained or improved for over 60% of inpatients upon discharge. Within 12 months of index admission, 50 patients (5%) died, 15 deaths (30%) occurred during the index admission.ConclusionsDisengagement with health services is common among homeless people. Many deaths are due to treatable medical conditions (heart disease, pneumonia, cancer). Observed increases in planned admissions suggests intervention from Pathway teams facilitates necessary investigations and treatment for homeless people. Equity, parity of care, and value should be inbuilt interventions for inclusion health groups and evaluations need to move beyond simply seeking cost reductions.

ObjectivesThe aim was to explore the views of professional stakeholders and healthcare professionals (HCPs) on the linkage of UK National Health Service (NHS) data for paediatric pharmacovigilance purposes and to...

BackgroundBloodstream infection is common in the UK and has significant mortality depending on the pathogen involved, site of infection and other patient factors. Healthcare staffing and ward activity may also impact on outcomes in a range of conditions, however there is little specific National Health Service (NHS) data on the impact for patients with bloodstream infection. Bloodstream Infections – Focus on Outcomes is a multicentre cohort study with the primary aim of identifying modifiable risk factors for 28-day mortality in patients with bloodstream infection due to one of six key pathogens.MethodsAdults under the care of five NHS Trusts in England and Wales between November 2010 and May 2012 were included. Multivariable Cox regression was used to quantify the association between modifiable risk factors, including staffing levels and timing of appropriate therapy, and 28-day mortality, after adjusting for non-modifiable risk factors such as patient demographics and long-term comorbidities.ResultsA total of 1676 patients were included in the analysis population. Overall, 348/1676 (20.8%) died within 28 days. Modifiable factors associated with 28-day mortality were ward speciality, ward activity (admissions and discharges), movement within ward speciality, movement from critical care, and time to receipt of appropriate antimicrobial therapy in the first 7 days. For each additional admission or discharge per 10 beds, the hazard increased by 4% (95% CI 1 to 6%) in medical wards and 11% (95% CI 4 to 19%) in critical care. Patients who had moved wards within speciality or who had moved out of a critical care ward had a reduction in hazard of mortality. In the first 7 days, hazard of death increased with increasing time to receipt of appropriate antimicrobial therapy.ConclusionThis study underlines the importance of appropriate antimicrobials within the first 7 days, and the potential for ward activity and ward movements to impact on survival in bloodstream infection.

BackgroundBladder cancer outcomes have not changed significantly in 30 years; the BladderPath trial (Image Directed Redesign of Bladder Cancer Treatment Pathway, ISRCTN35296862) proposes to evaluate a modified pathway for diagnosis and treatment ensuring appropriate pathways are undertaken earlier to improve outcomes. We are piloting a novel data collection technique based on routine National Health Service (NHS) data, with no traditional patient-Health Care Professional contact after recruitment, where trial data are traditionally collected on case report forms. Data will be collected from routine administrative sources and validated via data queries to sites. We report here the feasibility and pre-trial methodological development and validation of the schema proposed for BladderPath.MethodsLocally treated patient cohorts were utilised for routine data validation (hospital interactions data (HID) and administrative radiotherapy department data (RTD)). Single site events of interest were algorithmically extracted from the 2008–2018 HID and validated against reference datasets to determine detection sensitivity. Survival analysis was performed using RTD and HID data. Hazard ratios and survival statistics were calculated estimating treatment effects and further validating and assessing the scope of routine data.ResultsOverall, 829/1042 (sensitivity 0.80) events of interest were identified in the HID, with varying levels of sensitivity; identifying, 202/206 (sensitivity 0.98; PPV 0.96) surgical events but only 391/568 (sensitivity 0.69; PPV 0.95) radiotherapy regimens. An overall temporal quality improvement trend was present: detecting 41/117 events (35%) in 2011 to 104/109 (95%) in 2017 (all event types). Using the RTD, 5-year survival rates were 43% (95% CI 25–59%) in the chemoradiotherapy group and 30% (95% CI 23–36%) in the radiotherapy group; using the HID, the 5-year radical cystectomy survival rate was 57% (95% CI 50–63%).ConclusionsRoutine data are a feasible method for trial data collection. As long as events of interest are pre-validated, very high sensitivities for trial conduct can be achieved and further improved with targeted data queries. Outcomes can also be produced comparable to clinical trial and national dataset results. Given the real-time, obligatory nature of the HID, which forms the Hospital Episode Statistics (HES) data, alongside other datasets, we believe routine data extraction and validation is a robust way of rapidly collecting datasets for trials.

The current era of e-science and big data calls on researchers to ensure the security and management of their research data. In this case study, researchers from the University of Minnesota Libraries interviewed a graduate student research team and faculty advisor to provide an understanding of the educational gaps that need to be filled to graduate data-savvy engineers. This paper presents the needed data management skills with thoughts on how the engineering discipline and academic research libraries might partner on a shared training solution.

The digital transformation of our health care system will require not only digitization of existing tools but also a redesign of our care delivery system and collaboration with digital partners. Traditional patient journeys are reactive to symptom presentation and delayed by health care system-centric scheduling, leading to poor experience and avoidable adverse outcomes. Patient journeys will be reimagined to a digital health pathway that seamlessly integrates various care experiences from telemedicine, remote monitoring, to in-person clinic visits. Through centering the care delivery around the patients, they can have more delightful experiences and enjoy the quality of standardized condition pathways and outcomes. To design and implement digital health pathways at scale, enterprise health care systems need to develop capabilities and partnerships in human-centered design, operational workflow, clinical content management, communication channels and mechanisms, reporting and analytics, standards-based integration, security and data management, and scalability. Using a human-centered design methodology, care pathways will be built upon an understanding of the unmet needs of the patients to have a more enjoyable experience of care with improved clinical outcomes. To power this digital care pathway, enterprises will choose to build or partner for clinical content management to operationalize up-to-date, best-in-class pathways. With this clinical engine, this digital solution will engage with patients through multimodal communication modalities, including written, audio, photo, or video, throughout the patient journey. Leadership teams will review reporting and analytics functions to track that the digital care pathways will be iterated to improve patient experience, clinical metrics, and operational efficiency. On the backend, standards-based integration will allow this system to be built in conjunction with the electronic medical record and other data systems to provide safe and efficient use of the digital care solution. For protecting patient information and compliance, a security and data management strategy is critical to derisking breeches and preserving privacy. Finally, a framework of technical scalability will allow digital care pathways to proliferate throughout the enterprise and support the entire patient population. This framework empowers enterprise health care systems to avoid collecting a fragmented series of one-off solutions but develop a sustainable concerted roadmap to the future of proactive intelligent patient care.