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Nick Kane
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.
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.
Patient and public attitudes towards informed consent models and levels of awareness of Electronic Health Records in the UK
The development of Electronic Health Records (EHRs) forms an integral part of the information strategy for the National Health Service (NHS) in the UK, with the aim of facilitating health information exchange for patient care and secondary use, including research and healthcare planning. Implementing EHR systems requires an understanding of patient expectations for consent mechanisms and consideration of public awareness towards information sharing as might be made possible through integrated EHRs across primary and secondary health providers. Objectives: To explore levels of public awareness about EHRs and to examine attitudes towards different consent models with respect to sharing identifiable and de-identified records for healthcare provision, research and planning. Methods: A cross-sectional questionnaire survey was administered to adult patients and members of the public in primary and secondary care clinics in West London, UK in 2011. In total, 5331 individuals participated in the survey, and 3157 were included in the final analysis. Results: The majority (91%) of respondents expected to be explicitly asked for consent for their identifiable records to be accessed for health provision, research or planning. Half the respondents (49%) did not expect to be asked for consent before their de-identified records were accessed. Compared with White British respondents, those from all other ethnic groups were more likely to anticipate their permission would be obtained before their de-identified records were used. Of the study population, 59% reported already being aware of EHRs before the survey. Older respondents and individuals with complex patterns of interaction with healthcare services were more likely to report prior awareness of EHRs. Individuals self-identifying as belonging to ethnic groups other than White British, and those with lower educational qualifications were less likely to report being aware of EHRs than White British respondents and respondents with degree-level education, respectively. Those who reported being aware of EHRs were less likely to say they expected explicit consent to be sought before use of their de-identified record. Conclusions: A large number of patients remain unaware of EHRs, while preference for implicit consent is stronger among those who report previous awareness. Differences in awareness levels and consent expectations between groups with different socio-demographic characteristics suggest that public education and information campaigns should target specific groups to increase public awareness and ensure meaningful informed consent mechanisms.
Patient and public views about the security and privacy of Electronic Health Records (EHRs) in the UK: Results from a mixed methods study Healthcare Information Systems
Background: Although policy discourses frame integrated Electronic Health Records (EHRs) as essential for contemporary healthcare systems, increased information sharing often raises concerns among patients and the public. This paper examines patient and public views about the security and privacy of EHRs used for health provision, research and policy in the UK. Methods: Sequential mixed methods study with a cross-sectional survey (in 2011) followed by focus group discussions (in 2012-2013). Survey participants (N∈=∈5331) were recruited from primary and secondary care settings in West London (UK). Complete data for 2761 (51.8 %) participants were included in the final analysis for this paper. The survey results were discussed in 13 focus groups with people living with a range of different health conditions, and in 4 mixed focus groups with patients, health professionals and researchers (total N∈=∈120). Qualitative data were analysed thematically. Results: In the survey, 79 % of participants reported that they would worry about the security of their record if this was part of a national EHR system and 71 % thought the National Health Service (NHS) was unable to guarantee EHR safety at the time this work was carried out. Almost half (47 %) responded that EHRs would be less secure compared with the way their health record was held at the time of the survey. Of those who reported being worried about EHR security, many would nevertheless support their development (55 %), while 12 % would not support national EHRs and a sizeable proportion (33 %) were undecided. There were also variations by age, ethnicity and education. In focus group discussions participants weighed up perceived benefits against potential security and privacy threats from wider sharing of information, as well as discussing other perceived risks: commercial exploitation, lack of accountability, data inaccuracies, prejudice and inequalities in health provision. Conclusions: Patient and public worries about the security risks associated with integrated EHRs highlight the need for intensive public awareness and engagement initiatives, together with the establishment of trustworthy security and privacy mechanisms for health information sharing.
Health risks at work mean risks at home: Spatial aspects of COVID-19 among migrant workers in precarious jobs in England.
During COVID-19 lockdowns in England, 'key workers' including factory workers, carers and cleaners had to continue to travel to workplaces. Those in key worker jobs were often from more marginalised communities, including migrant workers in precarious employment. Recognising space as materially and socially produced, this qualitative study explores migrant workers' experiences of navigating COVID-19 risks at work and its impacts on their home spaces. Migrant workers in precarious employment often described workplace COVID-19 protection measures as inadequate. They experienced work space COVID-19 risks as extending far beyond physical work boundaries. They developed their own protection measures to try to avoid infection and to keep the virus away from family members. Their protection measures included disinfecting uniforms, restricting leisure activities and physically separating themselves from their families. Inadequate workplace COVID-19 protection measures limited workers' ability to reduce risks. In future outbreaks, support for workers in precarious jobs should include free testing, paid sick leave and accommodation to allow for self-isolation to help reduce risks to workers' families. Work environments should not be viewed as discrete risk spaces when planning response measures; responses and risk reduction approaches must also take into account impacts on workers' lives beyond the workplace.