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We lead multidisciplinary applied research and training to rethink the way health care is delivered in general practice and across the community.
Not being heard: barriers to high quality unplanned hospital care during young people's transition to adult services - evidence from 'this sickle cell life' research.
BackgroundYoung people's experiences of healthcare as they move into adult services can have a major impact on their health, and the transition period for young people with sickle cell disease (SCD) needs improvement. In this study, we explore how young people with SCD experience healthcare during this period of transition.MethodsWe conducted a co-produced longitudinal qualitative study, including 80 interviews in 2016-2017 with young people with SCD aged 13-21 (mean age 16.6) across two cities in England. We recruited 48 participants (30 female, 18 male): 27 interviews were one-off, and 53 were repeated 2-3 times over approximately 18 months. We used an inductive analytical approach, combining elements of Grounded Theory and thematic analysis.ResultsParticipants reported significant problems with the care they received in A&E during painful episodes, and in hospital wards as inpatients during unplanned healthcare. They experienced delays in being given pain relief and their basic care needs were not always met. Participants said that non-specialist healthcare staff did not seem to know enough about SCD and when they tried to work with staff to improve care, staff often seemed not prepared to listen to them or act on what they said. Participants said they felt out of place in adult wards and uncomfortable with the differences in adult compared with paediatric wards. Because of their experiences, they tried to avoid being admitted to hospital, attempting to manage their painful episodes at home and accessing unplanned hospital care only as a last resort. By contrast, they did not report having problems within SCD specialist services during planned, routine care.ConclusionsOur study underscores the need for improvements to make services youth-friendly and youth-responsive, including training staff in SCD-specific care, compassionate care and communication skills that will help them elicit and act on young people's voices to ensure they are involved in shaping their own healthcare. If young people are prevented from using transition skills (self-management, self-advocacy), or treated by staff who they worry do not have enough medical competency in their condition, they may well lose their trust in services, potentially compromising their own health.
Spaces for Citizen Involvement in Healthcare: An Ethnographic Study
This ethnographic study examines how participatory spaces and citizenship are co-constituted in participatory healthcare improvement efforts. We propose a theoretical framework for participatory citizenship in which acts of citizenship in healthcare are understood in terms of the spaces they are in. Participatory spaces consist of material, temporal and social dimensions that constrain citizens’ actions. Participants draw on external resources to try to make participatory spaces more productive and collaborative, to connect and expand them. We identify three classes of tactics they use to do this: ‘plotting’, ‘transient combination’ and ‘interconnecting’. All tactics help participants assemble to a greater or lesser extent a less fragmented participatory landscape with more potential for positive impact on healthcare. Participants’ acts of citizenship both shape and are shaped by participatory spaces. To understand participatory citizenship, we should take spatiality into account, and track the ongoing spatial negotiations and productions through which people can improve healthcare.
Introduction of point-of-care blood testing in early intervention in psychosis services: effects on physical health screening.
BACKGROUND: There is a significant mortality gap between the general population and people with psychosis. Completion rates of regular physical health assessments for cardiovascular risk in this group are suboptimal. Point-of-care testing (POCT) for diabetes and hyperlipidaemia - providing an immediate result from a finger-prick - could improve these rates. AIMS: To evaluate the impact on patient-clinician encounters and on physical health check completion rates of implementing POCT for cardiovascular risk markers in early intervention in psychosis (EIP) services in South East England. METHOD: A mixed-methods, real-world evaluation study was performed, with 40 POCT machines introduced across EIP teams in all eight mental health trusts in South East England from March to May 2021. Clinician training and support was provided. Numbers of completed physical health checks, HbA1c and lipid panel blood tests completed 6 and 12 months before and 6 months after introduction of POCT were collected for individual patients. Data were compared with those from the South West region, which acted as a control. Clinician questionnaires were administered at 2 and 8 months, capturing device usability and impacts on patient interactions. RESULTS: Post-POCT, South East England saw significant increases in HbA1c testing (odds ratio 2.02, 95% CI 1.17-3.49), lipid testing (odds ratio 2.38, 95% CI 1.43-3.97) and total completed health checks (odds ratio 3.61, 95% CI 1.94-7.94). These increases were not seen in the South West. Questionnaires revealed improved patient engagement, clinician empowerment and patients' preference for POCT over traditional blood tests. CONCLUSIONS: POCT is associated with improvements in the completion and quality of physical health checks, and thus could be a tool to enhance holistic care for individuals with psychosis.
Bridging assessment and treatment for repeat suicidality in prisons: Development and validation of a risk model
Background Suicidal thoughts and behaviours are common in people in prison and associated with poor health outcomes, including suicide, injury and repeat self-harm. Objective To develop and validate a model to stratify risk of repeat suicidality up to 3 months in people in prison. Methods In seven English prisons, we identified 754 people aged over 17 who had been placed on a suicide risk management plan after a self-harm episode or elevated risk. We developed a multivariable model to stratify risk of repeat suicidality at 3 months using routinely collected sociodemographic, clinical and prison-related factors, which were tested using Cox proportional HR models. In a prospective validation sample of 390 people from 13 prisons, we tested this model to assess risk of repeat suicidality at 3 months across a range of performance measures. Findings Of the overall sample of 1144 people in prison (n=966 men or 84%, mean age 33 years), 22% had the outcome of repeat suicidality over 3 months. The final risk model consisted of nine factors, including sex, calendar age and features of recent suicidal behaviour. Calibration and discrimination were similar in both development and validation samples, with O:E ratio=1.09 (95% CI 0.88 to 1.35) and c-statistic=0.66 (95% CI 0.60 to 0.72) in external validation. At a 25% cut-off, sensitivity was 58% (50 to 66) and specificity was 72% (68 to 75) in external validation. The tool (Risk Assessment for people in Prison at risk of Self-harm and Suicide, RAPSS) is available as an online risk calculator at https://oxrisk.com/rapsstrial/. Interpretation A novel assessment approach for repeat suicidality can provide an evidence-based approach to stratify risk and better allocate resources.
Urgent Implementation of Point-of-Care Testing for Group A Streptococcal Infection in a UK Children’s Emergency Department
Objective In late 2022, Western Europe and the United States experienced increased incidences of scarlet fever and life-threatening invasive group A streptococcal (iGAS) infections, especially among children. The outbreak was widely reported in the media in the United Kingdom, leading to increased emergency department (ED) attendances and threatened supplies of antibiotics. Our ED rapidly introduced point-of-care testing for GAS pharyngitis with the aim of rationalizing antibiotic prescribing. Methods We rapidly implemented the use of a molecular-based (polymerase chain reaction) point-of-care test for all children scoring 3 or higher on the McIsaac clinical prediction rule for GAS pharyngitis in children and performed a nested diagnostic accuracy study. The main outcome was concordance or discordance of antibiotic prescribing with the test result. Results Between December 2022 and April 2023, a total of 1,388 patients underwent point-of-care test (45% female, 55% male, median age of 3 y). Based on medical records review, 571 (41%) patients were tested inappropriately (i.e., they did not have documented pharyngitis or similar infection). Antibiotic prescribing was largely appropriate for patients with a diagnosis of pharyngitis or similar presentation, with 20.47% of children with a negative test prescribed antibiotics. Conclusion Antibiotic concordance was acceptable for children with pharyngitis and similar presentations, but nearly half of children without acute respiratory symptoms were tested inappropriately. EDs considering rapid implementation of point-of-care test in similar circumstances should ensure clear guidelines and training around their use so that clinically useful tests are not inadvertently dropped and resources are not wasted.
Digitally Enabled Care in Diverse Environments (DECIDE): protocol for a programme of rapid evaluation of technology-enabled remote monitoring in health and social care
Background There is considerable interest in technology-enabled remote monitoring in the UK. The aim is to respond to system pressures and improve access, experience and quality of care. There is an urgent need for process, outcome and impact evaluations of interventions at various stages of development and implementation to address evidence gaps around adoption, spread, sustainability and inequalities. Aim DECIDE (Digitally Enabled Care in Diverse Environments) is a centre for rapid evaluation of technology-enabled remote monitoring funded by the National Institute for Health and Care Research (2023 to 2026). It aims to support service users, service commissioners and providers of remote monitoring services, to enable high quality care. Example questions include: Is the technology-enabled remote monitoring innovation needed and, if so, for whom? How are technology-enabled care pathways implemented, and what are associated outcomes and impacts? What are the opportunities and challenges for sustainability, scale-up and spread? Methods A range of qualitative, quantitative and economic methods will be used. Exact methods and questions will be dependent on the focus, scope and scale of each evaluation. Evaluations will be informed by relevant theory, including the Non-Adoption, Abandonment and the challenges to Spread, Scale-up and Sustainability of technological innovation in health and care (NASSS) framework. A User Advisory Group and External Steering Committee, both with diverse voices, will help shape evaluation design, implementation and dissemination. Project-led dissemination will ensure timely sharing of insights and support impact. Conclusion Evaluations will advance understanding of when and for whom technology-enabled remote monitoring innovation is needed; how it works and how factors related to the intervention, implementation process and wider context influence adoption; associated outcomes and impacts, whether and how these tackle inequalities; and potential challenges to scale and spread. We aim to inform decision-making by policymakers, commissioners, providers, patients/service users and researchers.
Identifying benefits and concerns with using digital health services during COVID-19: Evidence from a hospital-based patient survey
Despite large-scale adoption during COVID-19, patient perceptions on the benefits and potential risks with receiving care through digital technologies have remained largely unexplored. A quantitative content analysis of responses to a questionnaire (N = 6766) conducted at a multi-site acute trust in London (UK), was adopted to identify commonly reported benefits and concerns. Patients reported a range of promising benefits beyond immediate usage during COVID-19, including ease of access; support for disease and care management; improved timeliness of access and treatment; and better prioritisation of healthcare resources. However, in addition to known risks such as data security and inequity in access, our findings also illuminate some less studied concerns, including perceptions of compromised safety; negative impacts on patient-clinician relationships; and difficulties in interpreting health information provided through electronic health records and mHealth apps. Implications for future research and practice are discussed.
Support for hospital doctors' workplace well-being in England: the Care Under Pressure 3 realist evaluation.
INTRODUCTION: The vital role of medical workforce well-being for improving patient experience and population health while assuring safety and reducing costs is recognised internationally. Yet the persistence of poor well-being outcomes suggests that current support initiatives are suboptimal. The aim of this research study was to work with, and learn from, diverse hospital settings to understand how to optimise strategies to improve doctors' well-being and reduce negative impacts on the workforce and patient care. METHODS: Realist evaluation consistent with the Realist And Meta-narrative Evidence Synthesis: Evolving Standards (RAMESES) II quality standards. Realist interviews (n=124) with doctors, well-being intervention implementers/practitioners and leaders in eight hospital settings (England) were analysed using realist logic. RESULTS: There were four key findings, underpinned by 21 context-mechanism-outcome configurations: (1) solutions needed to align with problems, to support doctor well-being and avoid harm to doctors; (2) doctors needed to be involved in creating solutions to their well-being problems; (3) doctors often did not know what support was available to help them with well-being problems and (4) there were physical and psychological barriers to accessing well-being support. DISCUSSION AND CONCLUSION: Doctors are mandated to 'first, do no harm' to their patients, and the same consideration should be extended to doctors themselves. Since doctors can be harmed by poorly designed or implemented well-being interventions, new approaches need careful planning and evaluation. Our research identified many ineffective or harmful interventions that could be stopped. The findings are likely transferable to other settings and countries, given the realist approach leading to principles and causal explanations.
Software Quality Injection (QI): A Quality Driven Holistic Approach for Optimising Big Healthcare Data Processing.
The rapid growth of big data is driving innovation in software development, with advanced analytics offering transformative opportunities in applied computing. Big Healthcare Data (BHD), characterised by multi-structured and complex data types, requires resilient and scalable architectures to effectively address critical data quality issues. This paper proposes a holistic framework for adopting advanced cloud-computing strategies to manage and optimise the unique characteristics of BHD processing. It outlines a comprehensive approach for ensuring optimal data handling for critical healthcare workflows by enhancing the system's quality attributes. The proposed framework prioritises and dynamically adjusts software functionalities in real-time, harnessing sophisticated orchestration capabilities to manage complex, multi-dimensional healthcare datasets, streamline operations, and bolster system resilience.
Characterising the volume and variation of multiple urgent suspected cancer referrals in England, April 2013-March 2018: a national cohort study.
OBJECTIVES: To establish a methodology to categorise urgent suspected cancer (USC) referrals in England and use these categories to understand individual patient referral patterns by demographic characteristics, financial year and referral pathway. DESIGN: Cross-sectional population-based cohort study. SETTING: From Cancer Waiting Times data, linked to demographic information held by the National Disease Registration Service, referral-level data on all USC referrals in England between 1 April 2013 and 31 March 2018. PARTICIPANTS: After restricting records to those with an English postcode at referral and with complete demographic information, 9 524 435 referrals were identified for 7 542 592 patients. PRIMARY AND SECONDARY OUTCOME MEASURES: USC referrals were categorised into first and subsequent USC referrals, based primarily on intervals between referral dates. Our primary outcome was to describe the distribution of referral categories by financial year, suspected cancer referral type and four demographic variables. Our secondary aim was to understand which suspected cancer referral types were found in combination within the first 4 months. RESULTS: During the study period, 7.5 million people had an USC referral, with one in five having more than one referral, with 9.5 million referrals in total. Referrals were categorised as first (91.1%) and subsequent (8.9%) USC referrals. The relative increase in the number of referrals across the study period was largest (78.2%) for subsequent USC referrals.Subsequent referrals were most common in the gynaecological (10%), lung (10%) and haematological cancer pathways (12%).Suspected lower gastrointestinal referrals were most frequently included in a pair of USC referrals; it was one of the five most common pairings for 14 out of 16 referral type pathways, contributing to 30% of upper gastrointestinal USC referral pairings. CONCLUSION: Multiple USC referrals increased in the study period, particularly within a year of the first referral. Common referral pairings suggest opportunities for pathway reorganisation where common non-specific symptoms result in multiple USC referrals.
Social science evidence for outbreak and pandemic response: Rapid research and analytics for public health emergencies
Infectious disease outbreaks are social events as much as biomedical ones. They arise and evolve in complex, unpredictable ways that are influenced by interactions within and across human, animal, and environmental ecosystems. Data and evidence from the social sciences bring visibility to the ways in which these dynamics shape outbreak trajectories, and draw attention to social, behavioral, historic, political, economic, and ecological dimensions of public health emergencies. When integrated with biomedical approaches, this evidence contributes to a rich, holistic understanding of disease transmission, prevention, and control. In the acute phase of an emergency, evidence needs to be rapidly produced, provide credible and robust findings, and be relevant to policy and response decisions that have a direct bearing on the trajectory of the outbreak. This chapter takes readers through some key considerations and points of practice for rapidly producing evidence related to social and behavioral dynamics in health emergencies. This chapter also highlights some common challenges and suggests how to overcome them.
The use of information for diabetes research and care: Patient views in West London
Data obtained during the care of people with diabetes mellitus may be used to advance research, improve quality, encourage innovation and support better self-care. However, the perspective of people living with diabetes is less well understood. This study examines the views of people with diabetes regarding access to electronic health records (EHRs) for health care and research. Survey data from a sub-group of 404 individuals with diabetes were analysed from a dataset of 5331 West London participants randomly sampled in a cross-sectional survey. These findings were explored in more detail in a focus group discussion involving people with diabetes. Sixty-seven percent of people with diabetes would support the inclusion of their full records on a national EHR for purposes of personal health provision. The vast majority (91%) would prefer to have access to their own full medical history rather than a truncated version. Seventy-nine percent said they would allow their EHR to be used for research: 51% allowing their records to be shared without identifiers and 28% being supportive of access to their identifiable information. A number of themes emerged from the focus group discussion on integrated EHRs, including expectations for improved communication with health professionals, increased participation in the consultation process, responsibility for self-care and data sharing for the greater good. In conclusion, wider sharing of health information may address some of the challenges diabetes care entails, although striking a balance between information fragmentation and sharing remains crucial to improve health, research and quality outcomes.
Patient and public views on electronic health records and their uses in the United Kingdom: Cross-sectional survey
Background: The development and implementation of electronic health records (EHRs) remains an international challenge. Better understanding of patient and public attitudes and the factors that influence overall levels of support toward EHRs is needed to inform policy. Objective: To explore patient and public attitudes toward integrated EHRs used simultaneously for health care provision, planning and policy, and health research. Methods: Cross-sectional questionnaire survey administered to patients and members of the public who were recruited from a stratified cluster random sample of 8 outpatient clinics of a major teaching hospital and 8 general practices in London (United Kingdom). Results: 5331 patients and members of the public responded to the survey, with 2857 providing complete data for the analysis presented here. There were moderately high levels of support for integrated EHRs used simultaneously for health care provision planning and policy, and health research (1785/2857, 62.47%), while 27.93% (798/2857) of participants reported being undecided about whether or not they would support EHR use. There were higher levels of support for specific uses of EHRs. Most participants were in favor of EHRs for personal health care provision (2563/2857, 89.71%), with 66.75% (1907/2857) stating that they would prefer their complete, rather than limited, medical history to be included. Of those "undecided" about integrated EHRs, 87.2% (696/798) were nevertheless in favor of sharing their full (373/798, 46.7%) or limited (323/798, 40.5%) records for health provision purposes. There were similar high levels of support for use of EHRs in health services policy and planning (2274/2857, 79.59%) and research (2325/2857, 81.38%), although 59.75% (1707/2857) and 67.10% (1917/2857) of respondents respectively would prefer their personal identifiers to be removed. Multivariable analysis showed levels of overall support for EHRs decreasing with age. Respondents self-identifying as Black British were more likely to report being undecided or unsupportive of national EHRs. Frequent health services users were more likely to report being supportive than undecided. Conclusions: Despite previous difficulties with National Health Service (NHS) technology projects, patients and the public generally support the development of integrated EHRs for health care provision, planning and policy, and health research. This support, however, varies between social groups and is not unqualified; relevant safeguards must be in place and patients should be guided in their decision-making process, including increased awareness about the benefits of EHRs for secondary uses.