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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.
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.
Understanding the lived experience of pregnancy and birth for survivors of rape and sexual assault.
BACKGROUND: One in five women in the UK are survivors of rape and sexual assault, and four in five women will give birth. This implies that a substantial number of women experience rape and sexual assault before pregnancy. We highlight and explore the voices and lived experiences of survivors during pregnancy and birth, to better understand the relationship between sexual violence, biomedicine, and pregnancy and to inform maternity care practice. METHODS: This qualitative research took an intersectional feminist approach. We conducted in-depth individual interviews in England with fourteen women who self-identified as survivors of rape or sexual assault, and who had experienced pregnancy and birth after the assault. We conducted open line-by-line coding of the interview transcripts, and identified key themes and sub-themes inductively. RESULTS: Three themes help summarise the narratives: control, safety and trauma. Maintaining a sense of control was important to survivors but they often reported objectification by healthcare staff and lack of consent or choice about healthcare decisions. Participants' preferences for giving birth were often motivated by their desire to feel in control and avoid triggering traumatic memories of the sexual assault. Survivors felt safer when they trusted staff. Many participants said it was important for staff to know they were survivors but none were asked about this. Pregnancy and birth experiences were triggering when they mirrored the assault, for instance if the woman was prevented from moving. Many of our participants reported having unmet mental health care needs before, during or after pregnancy. CONCLUSIONS: Survivors of sexual violence have specific maternity care needs. For our participants, these needs were often not met, leading to negative or traumatic experiences of pregnancy and birth. Systemic biases and poor birth experience jeopardise both psychological and physical safety. Funding for maternity and mental health services must be improved, so that they meet minimum staffing and care standards. Maternity services should urgently introduce trauma-informed models of care.
COVID-19 vaccination decisions among Gypsy, Roma, and Traveller communities: A qualitative study moving beyond "vaccine hesitancy".
BACKGROUND: Many people refuse vaccination and it is important to understand why. Here we explore the experiences of individuals from Gypsy, Roma, and Traveller groups in England to understand how and why they decided to take up or to avoid COVID-19 vaccinations. METHODS: We used a participatory, qualitative design, including wide consultations, in-depth interviews with 45 individuals from Gypsy, Roma, and Traveller, communities (32 female, 13 male), dialogue sessions, and observations, in five locations across England between October 2021 and February 2022. FINDINGS: Vaccination decisions overall were affected by distrust of health services and government, which stemmed from prior discrimination and barriers to healthcare which persisted or worsened during the pandemic. We found the situation was not adequately characterised by the standard concept of "vaccine hesitancy". Most participants had received at least one COVID-19 vaccine dose, usually motivated by concerns for their own and others' health. However, many participants felt coerced into vaccination by medical professionals, employers, and government messaging. Some worried about vaccine safety, for example possible impacts on fertility. Their concerns were inadequately addressed or even dismissed by healthcare staff. INTERPRETATION: A standard "vaccine hesitancy" model is of limited use in understanding vaccine uptake in these populations, where authorities and health services have been experienced as untrustworthy in the past (with little improvement during the pandemic). Providing more information may improve vaccine uptake somewhat; however, improved trustworthiness of health services for GRT communities is essential to increase vaccine coverage. FUNDING: This paper reports on independent research commissioned and funded by the National Institute for Health Research (NIHR) Policy Research Programme. The views expressed in this publication are those of the authors and not necessarily those of the NHS, the NIHR, the Department of Health and Social Care or its arm's length bodies, and other Government Departments.
'Bending' against straightening devices: queer lived experiences of sexuality and sexual health in Bangladesh.
BACKGROUND: Despite global data around increased health risks among sexual and gender diverse populations, lived experiences of young lesbian, gay, bisexual, transgender, queer or questioning, and others (LGBTQ+) people are often ignored in mainstream health research. This is particularly evident in countries such as Bangladesh where the rights of sexual minorities are not recognised. This article looks at queer lived experiences of sexuality and sexual health within such a context. We use the phenomenological framework of heteronormative 'straightening devices' - mechanisms working to direct people towards heterosexuality, gender conformity, and procreative marriage - to identify 'invisible' structures upholding normative sexual behaviours and see how young people in Bangladesh navigate these in their everyday lives. METHODS: This article is based on qualitative data collected in Dhaka, Bangladesh over nine months in 2019 as part of the first author's doctoral research. Using thematic analysis, we draw on experiences of normative sexual expectations from biographical in-depth interviews with 14 purposively sampled LGBTQ + individuals aged 18 to 24. RESULTS: Respondents identified heteronormative expectations around gender norms of traditional behaviour and presentation for men and women as well as parental expectations of compulsory heterosexuality through marriage. These straightening devices existed at multiple levels, including individual, interpersonal, community, and societal. The four main themes around straightening devices include marriage norms for women; harassment of feminine-presenting bodies in public spaces; heteronormative healthcare; and consequences of not embodying heteronormativity. CONCLUSION: Our study highlighted young people's everyday experiences of having to 'bend' to - and against - heteronormative straightening devices at home, in public spaces, and within institutions such as healthcare in Bangladesh. The exploration of queer experiences provides new insights into context-specific ways in which sexual and gender diverse people understand themselves. Further research using the framework of straightening devices can help public health professionals to identify more 'barriers' confronted by sexual and gender diverse young people.
Interpregnancy intervals and adverse birth outcomes in high-income countries: An international cohort study.
BACKGROUND: Most evidence for interpregnancy interval (IPI) and adverse birth outcomes come from studies that are prone to incomplete control for confounders that vary between women. Comparing pregnancies to the same women can address this issue. METHODS: We conducted an international longitudinal cohort study of 5,521,211 births to 3,849,193 women from Australia (1980-2016), Finland (1987-2017), Norway (1980-2016) and the United States (California) (1991-2012). IPI was calculated based on the time difference between two dates-the date of birth of the first pregnancy and the date of conception of the next (index) pregnancy. We estimated associations between IPI and preterm birth (PTB), spontaneous PTB, and small-for-gestational age births (SGA) using logistic regression (between-women analyses). We also used conditional logistic regression comparing IPIs and birth outcomes in the same women (within-women analyses). Random effects meta-analysis was used to calculate pooled adjusted odds ratios (aOR). RESULTS: Compared to an IPI of 18-23 months, there was insufficient evidence for an association between IPI <6 months and overall PTB (aOR 1.08, 95% CI 0.99-1.18) and SGA (aOR 0.99, 95% CI 0.81-1.19), but increased odds of spontaneous PTB (aOR 1.38, 95% CI 1.21-1.57) in the within-women analysis. We observed elevated odds of all birth outcomes associated with IPI ≥60 months. In comparison, between-women analyses showed elevated odds of adverse birth outcomes for <12 month and >24 month IPIs. CONCLUSIONS: We found consistently elevated odds of adverse birth outcomes following long IPIs. IPI shorter than 6 months were associated with elevated risk of spontaneous PTB, but there was insufficient evidence for increased risk of other adverse birth outcomes. Current recommendations of waiting at least 24 months to conceive after a previous pregnancy, may be unnecessarily long in high-income countries.
Evaluating Complex Interventions Using Qualitative Longitudinal Research: A Case Study of Understanding Pathways to Violence Prevention.
Evaluating social change programs requires methods that account for changes in context, implementation, and participant experience. We present a case study of a school-based partner violence prevention program with young people, where we conducted 33 repeat interviews with nine participants during and after an intervention and analyzed participant trajectories. We show how repeat interviews conducted during and after a social change program were useful in helping us understand how the intervention worked by providing rich contextual information, elucidating gradual shifts among participants, and identifying aspects of the intervention that appear to influence change. Long-term effects of social change interventions are very hard to quantify or measure directly. We argue that a qualitative longitudinal approach provides a way to measure subtle changes that can serve as proxies for longer term impacts.
Associations between interpregnancy interval and preterm birth by previous preterm birth status in four high-income countries: a cohort study.
OBJECTIVE: To investigate the effect of interpregnancy interval (IPI) on preterm birth (PTB) according to whether the previous birth was preterm or term. DESIGN: Cohort study. SETTING: USA (California), Australia, Finland, Norway (1980-2017). POPULATION: Women who gave birth to first and second (n = 3 213 855) singleton livebirths. METHODS: Odds ratios (ORs) for PTB according to IPIs were modelled using logistic regression with prognostic score stratification for potential confounders. Within-site ORs were pooled by random effects meta-analysis. OUTCOME MEASURE: PTB (gestational age <37 weeks). RESULTS: Absolute risk of PTB for each IPI was 3-6% after a previous term birth and 17-22% after previous PTB. ORs for PTB differed between previous term and preterm births in all countries (P-for-interaction ≤ 0.001). For women with a previous term birth, pooled ORs were increased for IPI <6 months (OR 1.50, 95% CI 1.43-1.58); 6-11 months (OR 1.10, 95% CI 1.04-1.16); 24-59 months (OR 1.16, 95% CI 1.13-1.18); and ≥ 60 months (OR 1.72, 95%CI 1.60-1.86), compared with 18-23 months. For previous PTB, ORs were increased for <6 months (OR 1.30, 95% CI 1.18-1.42) and ≥60 months (OR 1.29, 95% CI 1.17-1.42), but were less than ORs among women with a previous term birth (P
Unpacking power dynamics in research and evaluation on social accountability for sexual and reproductive health and rights.
Over the past decade, social accountability for health has coalesced into a distinct field of research and practice. Whether explicitly stated or not, changed power relations are at the heart of what social accountability practitioners seek, particularly in the context of sexual and reproductive health. Yet, evaluations of social accountability programs frequently fail to assess important power dynamics. In this commentary, we argue that we must include an examination of power in research and evaluation of social accountability in sexual and reproductive health, and suggest ways to do this. The authors are part of a community of practice on measuring social accountability and health outcomes. We share key lessons from our efforts to conduct power sensitive research using different approaches and methods.First, participatory research and evaluation approaches create space for program participants to engage actively in evaluations by defining success. Participation is also one of the key elements of feminist evaluation, which centers power relations rooted in gender. Participatory approaches can strengthen 'traditional' health evaluation approaches by ensuring that the changes assessed are meaningful to communities.Fields from outside health offer approaches that help to describe and assess changes in power dynamics. For example, realist evaluation analyses the causal processes, or mechanisms, grounded in the interactions between social, political and other structures and human agency; programs try to influence these structures and/or human agency. Process tracing requires describing the mechanisms underlying change in power dymanics in a very detailed way, promoting insight into how changes in power relationships are related to the broader program.Finally, case aggregation and comparison entail the aggregation of data from multiple cases to refine theories about when and how programs work. Case aggregation can allow for nuanced attention to context while still producing lessons that are applicable to inform programming more broadly.We hope this brief discussion encourages other researchers and evaluators to share experiences of analysing power relations as part of evaluation of social accountability interventions for sexual and reproductive health so that together, we improve methodology in this crucial area.