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BackgroundThe adoption of patient portals, such as the National Health Service (NHS) App in England, may improve patient engagement in health care. However, concerns remain regarding differences across sociodemographic groups in the uptake and use of various patient portal features, which have not been fully explored. Understanding the use of various functions across diverse populations is essential to ensure any benefits are equally distributed across the population. ObjectiveThis study aims to explore differences in the use of NHS App features across age, sex, deprivation, ethnicity, long-term health care needs, and general practice (GP) size categories. MethodsWe used weekly NHS App use data from the NHS App dashboard for 6386 GPs in England from March 2020 to June 2022. Negative binomial regression models explored variations in weekly rates of NHS App features used (registrations, log-ins, prescriptions ordered, medical record views, and appointments booked). Outcomes were measured as weekly rates per 1000 GP-registered patients, and we conducted separate models for each outcome. Regression models included all covariates mentioned above and produced incident rate ratios, which we present here as relative percentages for ease of interpretation. GP-level covariate data on sociodemographic variables were used as categorical variables in 5 groups for deprivation (Q1=least deprived practices and Q5=most deprived practices) and 4 groups for all other variables (Q1=least deprived practices and Q4=most deprived practices). ResultsWe found variations in the use of different features overall and across sociodemographic categories. Fully adjusted regression models found lower use of features overall in more deprived practices (eg, Q5 vs Q1: registrations=–34%, log-ins=–34.9%, appointments booked=–39.7%, medical record views=–32.3%, and prescriptions ordered=–9.9%; P

Abstract Aim With increasing rates of global obesity and associated health issues, there is an ever‐increasing need for weight management solutions to be more accessible. Mobile applications offer accessible support systems and have the potential to offer a viable and effective weight management solution as an alternative to traditional healthcare models. Objective To evaluate the effectiveness of the SIMPLE mobile application for time‐restricted eating in achieving weight loss (WL). Methods User data were analyzed between January 2021 and January 2023. In‐app activity was calculated as the proportion of active days over 12, 26 and 52 weeks. A day is considered active if it contains at least one in‐app action (e.g., logging weight, food, fasting, or physical activity). Users were categorized into four in‐app activity levels: inactive (in‐app activity

Introduction Around 2000 children are born in the UK per year with a neurodevelopmental genetic syndrome with significantly increased morbidity and mortality. Often little is known about expected growth and phenotypes in these children. Parents have responded by setting up social media groups to generate data themselves. Given the significant clinical evidence gaps, this research will attempt to identify growth patterns, developmental profiles and phenotypes, providing data on long-term medical and educational outcomes. This will guide clinicians when to investigate, monitor or treat symptoms and when to search for additional or alternative diagnoses.Methods and analysis This is an observational, multicentre cohort study recruiting between March 2023 and February 2026. Children aged 6 months up to 16 years with a pathogenic or likely pathogenic variant in a specified gene will be eligible. Children will be identified through the National Health Service and via self-recruitment. Parents or carers will complete a questionnaire at baseline and again 1 year after recruitment. The named clinician (in most cases a clinical geneticist) will complete a clinical proforma which will provide data from their most recent clinical assessment. Qualitative interviews will be undertaken with a subset of parents partway through the study. Growth and developmental milestone curves will be generated through the DECIPHER website (https://deciphergenomics.org) where 5 or more children have the same genetic syndrome (at least 10 groups expected).Ethics and dissemination The results will be presented at national and international conferences concerning the care of children with genetic syndromes. Results will also be submitted for peer review and publication.

BackgroundDigital health technologies (DHTs) play an ever-expanding role in health care management and delivery. Beyond their use as interventions, DHTs also serve as a vehicle for real-world data collection to characterize patients, their care journeys, and their responses to other clinical interventions. There is a need to comprehensively map the evidence—across all conditions and technology types—on DHT measurement of patient outcomes in the real world. ObjectiveWe aimed to investigate the use of DHTs to measure real-world clinical outcomes using patient-generated data. MethodsWe conducted this systematic scoping review in accordance with the Joanna Briggs Institute methodology. Detailed eligibility criteria documented in a preregistered protocol informed a search strategy for the following databases: MEDLINE (Ovid), CINAHL, Cochrane (CENTRAL), Embase, PsycINFO, ClinicalTrials.gov, and the EU Clinical Trials Register. We considered studies published between 2000 and 2022 wherein digital health data were collected, passively or actively, from patients with any specified health condition outside of clinical visits. Categories for key concepts, such as DHT type and analytical applications, were established where needed. Following screening and full-text review, data were extracted and analyzed using predefined fields, and findings were reported in accordance with established guidelines. ResultsThe search strategy identified 11,015 publications, with 7308 records after duplicates and reviews were removed. After screening and full-text review, 510 studies were included for extraction. These studies encompassed 169 different conditions in over 20 therapeutic areas and 44 countries. The DHTs used for mental health and addictions research (111/510, 21.8%) were the most prevalent. The most common type of DHT, mobile apps, was observed in approximately half of the studies (250/510, 49%). Most studies used only 1 DHT (346/510, 67.8%); however, the majority of technologies used were able to collect more than 1 type of data, with the most common being physiological data (189/510, 37.1%), clinical symptoms data (188/510, 36.9%), and behavioral data (171/510, 33.5%). Overall, there has been real growth in the depth and breadth of evidence, number of DHT types, and use of artificial intelligence and advanced analytics over time. ConclusionsThis scoping review offers a comprehensive view of the variety of types of technology, data, collection methods, analytical approaches, and therapeutic applications within this growing body of evidence. To unlock the full potential of DHT for measuring health outcomes and capturing digital biomarkers, there is a need for more rigorous research that goes beyond technology validation to demonstrate whether robust real-world data can be reliably captured from patients in their daily life and whether its capture improves patient outcomes. This study provides a valuable repository of DHT studies to inform subsequent research by health care providers, policy makers, and the life sciences industry. Trial RegistrationOpen Science Framework 5TMKY; https://osf.io/5tmky/

Summary: Genetics have nominated many schizophrenia risk genes and identified convergent signals between schizophrenia and neurodevelopmental disorders. However, functional interpretation of the nominated genes in the relevant brain cell types is often lacking. We executed interaction proteomics for six schizophrenia risk genes that have also been implicated in neurodevelopment in human induced cortical neurons. The resulting protein network is enriched for common variant risk of schizophrenia in Europeans and East Asians, is down-regulated in layer 5/6 cortical neurons of individuals affected by schizophrenia, and can complement fine-mapping and eQTL data to prioritize additional genes in GWAS loci. A sub-network centered on HCN1 is enriched for common variant risk and contains proteins (HCN4 and AKAP11) enriched for rare protein-truncating mutations in individuals with schizophrenia and bipolar disorder. Our findings showcase brain cell-type-specific interactomes as an organizing framework to facilitate interpretation of genetic and transcriptomic data in schizophrenia and its related disorders.

Abstract Parasitic salmon lice (Lepeophtheirus salmonis) threaten the economic and ecological sustainability of salmon farming, and their evolved resistance to treatment with emamectin benzoate (EMB) has been a major problem for salmon farming in the Atlantic Ocean. In contrast, the Pacific Ocean, where wild salmon are far more abundant, has not seen widespread evolution of EMB-resistant lice. Here, we use EMB bioassays and counts of lice on farms from the Broughton Archipelago, Canada—a core region of salmon farming in the Pacific—to show that EMB sensitivity has dramatically decreased since 2010, concurrent with marked decrease in the field efficacy of EMB treatments. Notably, these bioassay data were not made available through public reporting by industry or by the federal regulator, but rather through Indigenous-led agreements that created a legal obligation for salmon-farming companies to provide data to First Nations. Our results suggest that salmon lice in the Pacific Ocean have recently evolved substantial resistance to EMB, and that salmon-louse outbreaks on Pacific farms will therefore be more difficult to control in the coming years.

Abstract Background Self-management strategies are effective in a number of medical conditions; however, implementation studies have demonstrated adoption into clinical practice can be problematic. The process of implementation was explored during a pilot randomised controlled trial evaluating postpartum blood pressure self-management in women with medicated hypertensive disorders of pregnancy. Methods A mixed methods study using semi-structured interviews with a qualitative and a scored (quantitative) component were undertaken as part of a pilot randomised controlled trial (SNAP-HT) in postnatal women with medicated gestational hypertension or pre-eclampsia. Women were randomised to usual care or blood pressure self-management. Self-management entailed daily home blood pressure monitoring and automated medication reduction via telemonitoring. Women from both groups optionally consented to participate in audio-recorded interviews at 4 weeks and 6 months postpartum. Interview questions were developed to explore the proposed benefits of self-management and the constructs of normalisation process theory. Participants provided a score (Likert scale 1–5) for each question and were encouraged to expand upon these answers through further discussion. The interviews were transcribed and analysed using the framework approach. Results Sixty-eight women, 34 from each randomised group, completed at least one audio-recorded interview. Several overarching themes emerged from analysis of 126 interview transcripts: control; convenience; confidence, communication and knowledge; concern; constraints; and components of the intervention. In the scored component of the analysis, both groups reported feeling more in control of their condition postpartum compared to during pregnancy, more so in those self-managing at both 4 weeks and 6 months: adjusted differences 0.6 (95% confidence interval [CI] 0.2 to 1.1) and 0.7 (95% CI 0.3 to 1.2) respectively. Conclusions Interviews and quantitative data showed that self-management enhanced women’s sense of control and improved their blood pressure-related anxiety. Prior to taking part, a few women anticipated that home monitoring might increase anxiety, but stated that it had the opposite effect. Self-management was perceived as more flexible and reactive and as enabling more targeted down-titration of medication. These data provide considerable support for blood pressure self-management postpartum and reinforce the effectiveness of the intervention used in this study. Trial registration ClinicalTrials.gov: NCT02333240 . Prospectively registered on 7 January 2015.

Abstract Background As healthcare facilities in Low- and Middle-Income Countries adopt digital health systems to improve hospital administration and patient care, it is important to understand the adoption process and assess the systems’ capabilities. This survey aimed to provide decision-makers with information on the digital health systems landscape and to support the rapidly developing digital health community in Kenya and the region by sharing knowledge. Methods We conducted a survey of County Health Records Information Officers (CHRIOs) to determine the extent to which digital health systems in public hospitals that serve as internship training centres in Kenya are adopted. We conducted site visits and interviewed hospital administrators and end users who were at the facility on the day of the visit. We also interviewed digital health system vendors to understand the adoption process from their perspective. Semi-structured interview guides adapted from the literature were used. We identified emergent themes using a thematic analysis from the data. Results We obtained information from 39 CHRIOs, 58 hospital managers and system users, and 9 digital health system vendors through semi-structured interviews and completed questionnaires. From the survey, all facilities mentioned purchased a digital health system primarily for administrative purposes. Radiology and laboratory management systems were commonly standalone systems and there were varying levels of interoperability within facilities that had multiple systems. We only saw one in-patient clinical module in use. Users reported on issues such as system usability, inadequate training, infrastructure and system support. Vendors reported the availability of a wide range of modules, but implementation was constrained by funding, prioritisation of services, users’ lack of confidence in new technologies and lack of appropriate data sharing policies. Conclusion Public hospitals in Kenya are increasingly purchasing systems to support administrative functions and this study highlights challenges faced by hospital users and vendors. Significant work is required to ensure interoperability of systems within hospitals and with other government services. Additional studies on clinical usability and the workflow fit of digital health systems are required to ensure efficient system implementation. However, this requires support from key stakeholders including the government, international donors and regional health informatics organisations.

Abstract Despite growing interest from both patients and healthcare providers, there is little clinical guidance on how mobile apps should be utilized to add value to patient care. We categorize apps according to their functionality (e.g. preventative behavior change, digital self-management of a specific condition, diagnostic) and discuss evidence for effectiveness from published systematic reviews and meta-analyses and the relevance to patient care. We discuss the limitations of the current literature describing clinical outcomes from mHealth apps, what FDA clearance means now (510(k)/de novo FDA clearance) and in the future. We discuss data security and privacy as a major concern for patients when using mHealth apps. Patients are often not involved in the development of mobile health guidelines, and professionals’ views regarding high-quality health apps may not reflect patients’ views. We discuss efforts to develop guidelines for the development of safe and effective mHealth apps in the US and elsewhere and the role of independent app reviews sites in identifying mHealth apps for patient care. There are only a small number of clinical scenarios where published evidence suggests that mHealth apps may improve patient outcomes.

Objective In 2018, the UK National Institute for Health and Care Excellence (NICE), in partnership with Public Health England, NHS England, NHS Improvement and others, developed an evidence standards framework (ESF) for digital health and care technologies (DHTs). The ESF was designed to provide a standardised approach to guide developers and commissioners on the levels of evidence needed for the clinical and economic evaluation of DHTs by health and care systems. Methods The framework was developed using an agile and iterative methodology that included a literature review of existing initiatives and comparison of these against the requirements set by NHS England; iterative consultation with stakeholders through an expert working group and workshops; and questionnaire-based stakeholder input on a publicly available draft document. Results The evidence standards framework has been well-received and to date the ESF has been viewed online over 55,000 times and downloaded over 19,000 times. Conclusions In April 2021 we published an update to the ESF. Here, we summarise the process through which the ESF was developed, reflect on its global impact to date, and describe NICE’s ongoing work to maintain and improve the framework in the context for a fast moving, innovative field.

Abstract Background A large provider of community health services (an NHS Trust in England) deployed Apple iPads to its front-line community-based healthcare clinicians (predominantly nurses) to enable them to increase responsiveness to patients’ and their families’ needs. We conducted a participatory formative evaluation of this iPad initiative among different users and the informatics teams implementing it, to establish how such initiatives can sustain adoption and achieve their stated benefits. Methods We used a participatory approach involving a partnership between study investigators and key decision-makers of the initiative to engage stakeholders in the study. Methods included focus groups and group discussion, meetings with key personnel and analysis of documents related to the initiative. Using a participatory technique, members of the organisation identified practical challenges to inform the on-going process of implementation and adoption in the Trust. Results Healthcare professionals identified many benefits associated with having iPads to support care delivery, including streamlined workflows and accessible information at the point-of-care in the community. However, challenges that interfered with implementation were also reported by both the team implementing the initiative (IT team) and early users. Challenges reported by IT team are: adopter clinicians’ scepticism and suspicion; clinician non-compliance with training and operational guidance procedures; and managing adopter expectations. Challenges reported by users are: setting-up and maintaining the devices on a long-term basis; blurring of personal and professional boundaries; and disconnection from the IT team. Results show that these challenges could be overcome if there were more informal ‘socialised’ interactions between adopters and between adopters and the IT team. Conclusions We suggest that similar initiatives require increased ongoing dialogue between different levels of stakeholder groups, in the form of socialised engagements, to avoid common misunderstandings and to promote the processes involved in co-constructing the initiative on a generally-agreed and sustainable basis.

Introduction Patients are increasingly using online platforms to give feedback about their health-care experiences. Online feedback has been proposed as a way to drive transformative change in the health service through informing choice and improving quality. Attitudes held by health-care professionals influence the uptake of new technologies. Understanding these attitudes is essential in exploring the potential of online patient feedback as a standard feedback mechanism. This study explores the content of free-text comments left by doctors responding to a survey with the aim of understanding their attitudes towards online feedback. Methods A cross-sectional online questionnaire was completed by 1001 UK primary and secondary-care doctors. Doctors were given the opportunity to leave a free-text comment about online patient feedback. Doctors’ attitudes towards online patient feedback were identified and explored using thematic analysis. Descriptive statistics and chi-square tests were used to examine demographic differences between those doctors who left a comment and those who did not. Results Thematic analysis identified five key interrelated themes: anonymity, confidentiality, representativeness, moderation/regulation of online feedback and platform type. The characteristics of those leaving a comment very closely matched those of the entire survey sample. Conclusion Across the comments, the most prominent finding was a general scepticism and caution towards online feedback, with most of the key themes relating to the perceived limitations and challenges. Further work exploring ways of addressing and verifying online comments without breaching confidentiality could provide valuable information to health systems seeking to drive improvement through patient online feedback.

Background and aim: The NHS collects a large number of data on patient experience, but there are concerns that it does not use this information to improve care. This study explored whether or not and how front-line staff use patient experience data for service improvement. Methods: Phase 1 – secondary analysis of existing national survey data, and a new survey of NHS trust patient experience leads. Phase 2 – case studies in six medical wards using ethnographic observations and interviews. A baseline and a follow-up patient experience survey were conducted on each ward, supplemented by in-depth interviews. Following an initial learning community to discuss approaches to learning from and improving patient experience, teams developed and implemented their own interventions. Emerging findings from the ethnographic research were shared formatively. Phase 3 – dissemination, including an online guide for NHS staff. Key findings: Phase 1 – an analysis of staff and inpatient survey results for all 153 acute trusts in England was undertaken, and 57 completed surveys were obtained from patient experience leads. The most commonly cited barrier to using patient experience data was a lack of staff time to examine the data (75%), followed by cost (35%), lack of staff interest/support (21%) and too many data (21%). Trusts were grouped in a matrix of high, medium and low performance across several indices to inform case study selection. Phase 2 – in every site, staff undertook quality improvement projects using a range of data sources. The number and scale of these varied, as did the extent to which they drew directly on patient experience data, and the extent of involvement of patients. Before-and-after surveys of patient experience showed little statistically significant change. Making sense of patient experience ‘data’ Staff were engaged in a process of sense-making from a range of formal and informal sources of intelligence. Survey data remain the most commonly recognised and used form of data. ‘Soft’ intelligence, such as patient stories, informal comments and daily ward experiences of staff, patients and family, also fed into staff’s improvement plans, but they and the wider organisation may not recognise these as ‘data’. Staff may lack confidence in using them for improvement. Staff could not always point to a specific source of patient experience ‘data’ that led to a particular project, and sometimes reported acting on what they felt they already knew needed changing. Staff experience as a route to improving patient experience Some sites focused on staff motivation and experience on the assumption that this would improve patient experience through indirect cultural and attitudinal change, and by making staff feel empowered and supported. Staff participants identified several potential interlinked mechanisms: (1) motivated staff provide better care, (2) staff who feel taken seriously are more likely to be motivated, (3) involvement in quality improvement is itself motivating and (4) improving patient experience can directly improve staff experience. ‘Team-based capital’ in NHS settings We propose ‘team-based capital’ in NHS settings as a key mechanism between the contexts in our case studies and observed outcomes. ‘Capital’ is the extent to which staff command varied practical, organisational and social resources that enable them to set agendas, drive process and implement change. These include not just material or economic resources, but also status, time, space, relational networks and influence. Teams involving a range of clinical and non-clinical staff from multiple disciplines and levels of seniority could assemble a greater range of capital; progress was generally greater when the team included individuals from the patient experience office. Phase 3 – an online guide for NHS staff was produced in collaboration with The Point of Care Foundation. Limitations: This was an ethnographic study of how and why NHS front-line staff do or do not use patient experience data for quality improvement. It was not designed to demonstrate whether particular types of patient experience data or quality improvement approaches are more effective than others. Future research: Developing and testing interventions focused specifically on staff but with patient experience as the outcome, with a health economics component. Studies focusing on the effect of team composition and diversity on the impact and scope of patient-centred quality improvement. Research into using unstructured feedback and soft intelligence. Funding: The National Institute for Health Research Health Services and Delivery Research programme.

ObjectivesTo ascertain the relationship between online patient feedback and the General Practice Patient Survey (GPPS) and the Friends and Family Test (FFT). To consider the potential benefit it may add by describing the content of public reviews found on NHS Choices for all general practices in one Clinical Commissioning Group in England.DesignMultimethod study using correlation and thematic analysis.Setting1396 public online reviews and ratings on NHS Choices for all General Practices (n=70) in Oxfordshire Clinical Commissioning Group in England.ResultsSignificant moderate correlations were found between the online patient feedback and the GPPS and the FFT. Three themes were developed through the qualitative analysis: (1) online feedback largely provides positive reinforcement for practice staff; (2) online feedback is used as a platform for suggesting service organisation and delivery improvements; (3) online feedback can be a source of insight into patients’ expectations of care. These themes illustrate the wide range of topics commented on by patients, including their medical care, relationships with various members of staff, practice facilities, amenities and services in primary care settings.ConclusionsThis multimethod study demonstrates that online feedback found on NHS Choices is significantly correlated with established measures of quality in primary care. This suggests it has a potential use in understanding patient experience and satisfaction, and a potential use in quality improvement and patient safety. The qualitative analysis shows that this form of feedback contains helpful information about patients’ experiences of general practice that provide insight into issues of quality and patient safety relevant to primary care. Health providers should offer patients multiple ways of offering feedback, including online, and should have systems in place to respond to and act on this feedback.

Abstract Background Studies have shown that low haemoglobin and anaemia are associated with poor cognition, and anaemia is known to be associated with Alzheimer’s disease (AD), but the mechanism of this risk is unknown. Here, we first seek to confirm the association between cognition and anaemia and secondly, in order to further understand the mechanism of this association, to estimate the direction of causation using Mendelian randomisation. Methods Two independent cohorts were used in this analysis: AddNeuroMed, a longitudinal study of 738 subjects including AD and age-matched controls with blood cell measures, cognitive assessments and gene expression data from blood; and UK Biobank, a study of 502,649 healthy participants, aged 40–69 years with cognitive test measures and blood cell indices at baseline. General linear models were calculated using cognitive function as the outcome with correction for age, sex and education. In UK Biobank, SNPs with known blood cell measure associations were analysed with Mendelian randomisation to estimate direction of causality. In AddNeuroMed, gene expression data was used in pathway enrichment analysis to identify associations reflecting biological function. Results Both sample sets evidence a reproducible association between cognitive performance and mean corpuscular haemoglobin (MCH), a measure of average mass of haemoglobin per red blood cell. Furthermore, in the AddNeuroMed cohort, where longitudinal samples were available, we showed a greater decline in red blood cell indices for AD patients when compared to controls (p values between 0.05 and 10−6). In the UK Biobank cohort, we found lower haemoglobin in participants with reduced cognitive function. There was a significant association for MCH and red blood cell distribution width (RDW, a measure of cell volume variability) compared to four cognitive function tests including reaction time and reasoning (p

Background: Online customer feedback has become routine in many industries, but it has yet to be harnessed for service improvement in health care. Objectives: To identify the current evidence on online patient feedback; to identify public and health professional attitudes and behaviour in relation to online patient feedback; to explore the experiences of patients in providing online feedback to the NHS; and to examine the practices and processes of online patient feedback within NHS trusts. Design: A multimethod programme of five studies: (1) evidence synthesis and stakeholder consultation; (2) questionnaire survey of the public; (3) qualitative study of patients’ and carers’ experiences of creating and using online comment; (4) questionnaire surveys and a focus group of health-care professionals; and (5) ethnographic organisational case studies with four NHS secondary care provider organisations. Setting: The UK. Methods: We searched bibliographic databases and conducted hand-searches to January 2018. Synthesis was guided by themes arising from consultation with 15 stakeholders. We conducted a face-to-face survey of a representative sample of the UK population (n = 2036) and 37 purposively sampled qualitative semistructured interviews with people with experience of online feedback. We conducted online surveys of 1001 quota-sampled doctors and 749 nurses or midwives, and a focus group with five allied health professionals. We conducted ethnographic case studies at four NHS trusts, with a researcher spending 6–10 weeks at each site. Results: Many people (42% of internet users in the general population) read online feedback from other patients. Fewer people (8%) write online feedback, but when they do one of their main reasons is to give praise. Most online feedback is positive in its tone and people describe caring about the NHS and wanting to help it (‘caring for care’). They also want their feedback to elicit a response as part of a conversation. Many professionals, especially doctors, are cautious about online feedback, believing it to be mainly critical and unrepresentative, and rarely encourage it. From a NHS trust perspective, online patient feedback is creating new forms of response-ability (organisations needing the infrastructure to address multiple channels and increasing amounts of online feedback) and responsivity (ensuring responses are swift and publicly visible). Limitations: This work provides only a cross-sectional snapshot of a fast-emerging phenomenon. Questionnaire surveys can be limited by response bias. The quota sample of doctors and volunteer sample of nurses may not be representative. The ethnographic work was limited in its interrogation of differences between sites. Conclusions: Providing and using online feedback are becoming more common for patients who are often motivated to give praise and to help the NHS improve, but health organisations and professionals are cautious and not fully prepared to use online feedback for service improvement. We identified several disconnections between patient motivations and staff and organisational perspectives, which will need to be resolved if NHS services are to engage with this source of constructive criticism and commentary from patients. Future work: Intervention studies could measure online feedback as an intervention for service improvement and longitudinal studies could examine use over time, including unanticipated consequences. Content analyses could look for new knowledge on specific tests or treatments. Methodological work is needed to identify the best approaches to analysing feedback. Study registration: The ethnographic case study work was registered as Current Controlled Trials ISRCTN33095169. Funding: This project was funded by the National institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 7, No. 38. See the NIHR Journals Library website for further project information.

Late onset Alzheimer's disease is the most common form of dementia for which about 30 susceptibility loci have been reported. The aim of the current study is to identify novel genes associated with Alzheimer's disease using the largest up-to-date reference single nucleotide polymorphism (SNP) panel, the most accurate imputation software and a novel gene-based analysis approach which tests for patterns of association within genes, in the powerful genome-wide association dataset of the International Genomics of Alzheimer's Project Consortium, comprising over 7 million genotypes from 17,008 Alzheimer's cases and 37,154 controls. In addition to earlier reported genes, we detected three novel gene-wide significant loci PPARGC1A (p = 2.2 × 10-6), RORA (p = 7.4 × 10-7) and ZNF423 (p = 2.1 × 10-6). PPARGC1A and RORA are involved in circadian rhythm; circadian disturbances are one of the earliest symptoms of Alzheimer's disease. PPARGC1A is additionally linked to energy metabolism and the generation of amyloid beta plaques. RORA is involved in a variety of functions apart from circadian rhythm, such as cholesterol metabolism and inflammation. The ZNF423 gene resides in an Alzheimer's disease-specific protein network and is likely involved with centrosomes and DNA damage repair.

Abstract Background The internet is frequently used to share experiences of health and illness, but this phenomenon has not been harnessed as an intervention to achieve health behaviour change. The aim of this study was to determine the feasibility of a randomised trial assessing the effects of a novel, experience-based website as a smoking cessation intervention. The secondary aim was to measure the potential impact on smoking behaviour of both the intervention and a comparator website. Methods A feasibility randomised controlled single-blind trial assessed a novel, experience-based website containing personal accounts of quitting smoking as a cessation intervention, and a comparator website providing factual information. Feasibility measures including recruitment, and usage of the interventions were recorded, and the following participant-reported outcomes were also measured: Smoking Abstinence Self-Efficacy Questionnaire, the single-item Motivation to Stop Scale, self-reported abstinence, quit attempts and health status outcomes. Eligible smokers from two English regions were entered into the trial and given access to their allocated website for two weeks. Results Eighty-seven smokers were randomised, 65 completed follow-up (75 %). Median usage was 15 min for the intervention, and 5 min for the comparator (range 0.5–213 min). Median logins for both sites was 2 (range 1–20). All participant-reported outcomes were similar between groups. Conclusions It was technically feasible to deliver a novel intervention harnessing the online sharing of personal experiences as a tool for smoking cessation, but recruitment was slow and actual use was relatively low, with attrition from the trial. Future work needs to maximize engagement and to understand how best to assess the value of such interventions in everyday use, rather than as an isolated ‘dose of information’. Trial registration ISRCTN29549695 DOI 10.1186/ISRCTN29549695 . Registered 17/05/2013.

Problematic smartphone use is an emerging public health problem since the launch of the first smartphone 10 years ago. In this article, pathways to problematic use of smartphones, approaches to deal with this issue and their limitations are discussed. This includes problematic use of smartphones by people who self-identify that they or their family members use mobile devices in a problematic way. Extreme problematic use (e.g. relating to online gambling or heavy gaming) that severely disrupts people’s lives is a form of digital addiction is excluded from this discussion. Smartphone use can be problematic for some people due to the availability of constant connection, the addictiveness of applications (apps) combined with personal psychological factors. This is facilitated by characteristics of the technology, including easy access, the possibility of escaping daily life, being able to remain anonymous online, and the frequency of alerts and messages. While various non-technical interventions, such as digital detoxes, and digital interventions, including apps to limit use, have been developed to help people control their smartphone use, none of these has proven to work yet. An overview of currently available apps for problematic smartphone use is provided. Further work is needed on various aspects of problematic smartphone use, including the understanding of how smartphone use impacts on people’s lives, strengthening the definition of problematic smartphone use, and validation of its measurement, and more rigorous development and assessment of tools. We hope that these efforts will help people to use their smartphones in a healthy and effective way.

Background: Innovation driven by authoritative evidence is critical to the survival of England’s NHS. Clinical Commissioning Groups (CCGs) are central in NHS efforts to do more with less. Although decisions should be based on the ‘best available evidence’, this is often problematic, with frequent mismatches between the evidence ‘pushed’ by producers and that used in management work. Our concern, then, is to understand practices and conditions (which we term ‘capabilities’) that enable evidence use in commissioning work. We consider how research gets into CCGs (‘push’), how CCGs use evidence (‘pull’) and how this can be supported (toolkit development). We aim to contribute to evidence-based NHS innovation, and, more generally, to improved health-care service provision. Method: Supported by the National Institute for Health Research (NIHR), we conducted semistructured ethnographic interviews in eight CCGs. We also conducted observations of redesign meetings in two of the CCGs. We used inductive and deductive coding to identify evidence used and capabilities for use from the qualitative data. We then compared across cases to understand variations in outcomes as a function of capabilities. To help improvements in commissioning, we collated our findings into a toolkit for use by stakeholders. We also conducted a small-scale case study of the production of evidence-based guidance to understand evidence ‘push’. Results: Fieldwork indicated that different evidences inform CCG decision-making, which we categorise as ‘universal’, ‘local’, ‘expertise-based’ and ‘trans-local’. Fieldwork also indicated that certain practices and conditions (‘capabilities’) enable evidence use, including ‘sourcing and evaluating evidence’, ‘engaging experts’, ‘effective framing’, ‘managing roles and expectations’ and ‘managing expert collaboration’. Importantly, cases in which fewer capabilities were recorded tended to report more problems, relative to cases in which needed capabilities were applied. These latter cases were more likely to effectively use evidence, achieve objectives and maintain stakeholder satisfaction. We also found that various understandings of end-users are inscribed into products by evidence producers, which seems to reflect the evolving landscape of the production of authoritative evidence. Conclusions: This was exploratory research on evidence use capabilities in commissioning decisions. The findings suggest that commissioning stakeholders need support to identify, understand and apply evidence. Support to develop capabilities for evidence may be one means of ensuring effective, evidence-based innovations in commissioning. Our work with evidence producers also shows variation in their perceptions of end users, which may inform the ‘push’/’pull’ gap between research and practice. There were also some limitations to our project, including a smaller than expected sample size and a time frame that did not allow us to capture full redesign projects in all CCGs. Future work: With these findings in mind, future work may look more closely at how information comes to be treated as evidence and at the relationships of capabilities to project outcomes. Going forward, knowledge, especially that related to generalisability, may be built by means of a longer time and the study of redesign projects in different settings. Funding: The NIHR Health Services and Delivery Research programme.

Design and objective This paper describes the protocol for a large-scale pragmatic, randomised controlled trial and economic evaluation to investigate the effectiveness and cost-effectiveness of the self-directed E-Couch social anxiety module versus a waiting list control condition, for reducing sub-clinical social anxiety symptoms in the general population. Study population Community-based adults (aged 18+) with social anxiety symptoms that do not meet the criteria for social anxiety disorder recruited via a direct-to-consumer advertisement on national websites. Intervention and control Intervention is the self-guided E-Couch social anxiety module. Control group participants are placed on a waiting list to receive the intervention at the end of the trial. Both groups receive email and text message reminders. Outcome measures The primary outcome will be change in self-reported social anxiety score using the Social Phobia Inventory (SPIN). Secondary outcomes will be the changes in the following self-report measures: Brief Fear of Negative Evaluation scale (BFNE-S); depression (CES-D); mental wellbeing (SWEMWEBS); health status (SF36); use of health services; safety events; and adherence, retention, and attrition rates. All measures will be administered at baseline, 6 weeks, and 3, 6 and 12 months. Analysis A mixed effects model will be used to analyse the effect of the intervention on the primary and secondary outcomes (intention to treat analysis). Secondary analyses will explore moderators and mediators of effect. A prospective economic evaluation, conducted from a NHS and social care perspective, will provide estimates of cost utility and cost-effectiveness. An interview study will be conducted with 20 participants to explore issues including acceptability, adherence, retention and attrition. Trial registration numbers NCT02451878 and ISRCTN15819951

Objective To perform a systematic review of the literature on the prevalence of cognitive impairment and dementia in sub-Saharan Africa. Methods Five electronic databases were searched for relevant abstracts and to identify papers eligible for full-text review. A study was included if two authors agreed that it had a cohort, case–control or cross-sectional design and reported population-level data; was limited to black African adults older than 50 years or described as “elderly” or “old”; reported data for individuals residing in sub-Saharan Africa; and reported at least one measure of cognitive impairment or clinical outcomes relevant to cognitive decline. References of papers included in our study were searched to identify additional candidate publications. Disagreements about inclusion were adjudicated during discussions involving all authors. Data were extracted independently by two authors, using a form developed by the authors and tested on a sample of papers. Findings A total of 2320 unique papers was found; the full text of 87 was reviewed. Nineteen papers featuring 11 cross-sectional studies were included; all were published during 1995–2011. Studies occurred in Benin, Botswana, the Central African Republic, the Congo and Nigeria and enrolled approximately 10 500 participants. The prevalence of dementia ranged from 0%, in Nigeria, to 10.1% (95% confidence interval, CI: 8.6–11.8), also in Nigeria. The prevalence of cognitive impairment ranged from 6.3%, in Nigeria, to 25% (95% CI: 21.2–29.0), in the Central African Republic. Conclusion Prevalences of dementia and cognitive impairment in sub-Saharan Africa varied widely, with few published studies revealed by the literature search.

Background: Traditional health information has been based on facts and figures and not on patient experience (PEx). Websites featuring people’s accounts of their experiences of health and illness are popular as a source of information, support and much else. However, there are concerns that experiential information on the internet might have adverse effects on health. Aims: To find out whether, when and how the NHS should incorporate PEx into online health information and elucidate the mechanisms through which PEx might influence health, develop a tool to measure the effects of online PEx, explore how PEx is used, and investigate the feasibility and acceptability of a randomised controlled trial of online PEx. Methods: Mixed methods, including a conceptual literature review, qualitative secondary data analysis, the development of a new questionnaire, online ethnography, observational and experimental studies in an internet café environment, and finally feasibility trials to compare new websites based on PEx with those based on facts and figures. Results: The review concluded that online PEx could affect health outcomes through seven domains (information, support, affecting relationships, providing ideas on how to use health services, influencing behaviour change, learning to tell the story and visualising illness). We developed the e-Health Impact Questionnaire, which demonstrates good psychometric properties and is suitable for use across different health groups and various styles of online information. Online ethnographic studies found three types of PEx on multiple sclerosis (MS) platforms: accounts of ‘living with MS’, self-expression and creativity, and experiences of health care and treatment. Observational and laboratory-based methods included studies of how people find and use PEx to inform health choices. We developed a three-stage model (gating, the engagement loop and outcomes) which guided the development of six prototype multimedia websites featuring either experiential information (intervention) or factual information (comparator) for three exemplar health issues. We evaluated the feasibility and acceptability of a trial of the prototype PEx websites, comparing self-report and process measures with a comparator. In the three conditions we randomised 87 (smoking cessation), 148 (asthma), and 42 (caring for someone with MS) participants. At final (2-week) follow-up, retention rates were 75%, 82% and 86%, for smoking cessation, asthma and MS carers, respectively. Usage of the allocated websites was low. The median number of logins to the websites over the 2-week period was two, two and four; the median number of page views was 10, 15 and 27.5, respectively, with a median total duration on site of 9 minutes, 17 minutes and 31.5 minutes respectively. There were no reported adverse events or harms. The qualitative interviews with 30 trial participants found that the trial methods were acceptable and not burdensome and that preferences for combinations of different types of information were both idiosyncratic and dependent on timing and need. Limitations: This programme used a pragmatic, mixed-methods approach, in which we adapted some standard approaches (e.g. realist review). The conceptual review provided a framework for the whole programme but did not draw on a single overarching theoretically informed approach. Instead, we used relevant theory and methods from the work package leads, who represented a range of disciplines. Conclusions: Online PEx is not seen as an alternative to facts, or to care from a health professional, but is used in addition to other sources of information, support and expression. This programme of work indicates how the sharing of online PEx may benefit people, and how this can be measured. A randomised controlled trial is feasible but an allocated ‘exposure’ to a ‘dose of information’ is far from from how online experiences are shared in everyday life. Future work evaluating online health interventions which incorporate personal experiences should aim to reflect ‘natural’ use of the internet and might include online ethnography and offline interviews. Studies might explore how and why people use online sources of experience-based health information, and the effects on subsequent behaviour and health and social outcomes in different conditions. Future intervention research evaluating online health interventions should examine and explain issues of engagement and use, and seek to identify how to increase engagement. Trial registration: Current Controlled Trials ISRCTN29549695. Funding: This project was funded by the Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research; Vol. 4, No. 17. See the NIHR Journals Library website for further project information.

This article examines the fourteen conditions constituting Levinson and Alperson’s taxonomy of conditions for temporal arts. It claims that some of the conditions and several of the lists of arts exemplifying them need revision. It recommends adding a new condition concerned with the effects of the passage of time on gardens, environmental sculpture, and outdoor installations. The article concludes that gardens may be a model for understanding and appreciating other arts sharing the same bi-(multi-) modality.

E-health encompasses a diverse set of informatics tools that have been designed to improve public health and health care. Little information is available on the impacts of e-health programmes, particularly in low-and middle-income countries. We therefore conducted a scoping review of the published and non-published literature to identify data on the effects of e-health on health outcomes and costs. The emphasis was on the identification of unanswered questions for future research, particularly on topics relevant to low-and middle-income countries. Although e-health tools supporting clinical practice have growing penetration globally, there is more evidence of benefits for tools that support clinical decisions and laboratory information systems than for those that support picture archiving and communication systems. Community information systems for disease surveillance have been implemented successfully in several low-and middle-income countries. Although information on outcomes is generally lacking, a large project in Brazil has documented notable impacts on health-system efficiency. Meta-analyses and rigorous trials have documented the benefits of text messaging for improving outcomes such as patients' self-care. Automated telephone monitoring and self-care support calls have been shown to improve some outcomes of chronic disease management, such as glycaemia and blood pressure control, in low-and middle-income countries. Although large programmes for e-health implementation and research are being conducted in many low-and middle-income countries, more information on the impacts of e-health on outcomes and costs in these settings is still needed.

Background: Evidence-based practice has permeated professional life as a normative ideal. The resulting movement of ‘evidence-based management’ is premised on assumed positive consequences of managers making organisational decisions informed by research, rather than by personal experience alone. However, we know little about how health-care managers engage with information and knowledge in practice, especially at the highest level. Objectives: The study aimed to investigate how chief executive officers (CEOs) of NHS trusts make decisions and mobilise particular knowledge and ‘evidence’ in the course of their day-to-day activities. Design: The study was conducted between March 2011 and May 2013. We employed a qualitative naturalistic approach, combining in-depth observation with interviews and documentary analysis. Seven CEOs of acute and mental health NHS trusts in England were shadowed for an average of 5 weeks each. This sample included four women and three men. To protect the anonymity of our informants, and following customary academic practice in the social sciences, in this report we refer to all our participants using the female pronoun. We aimed to maximise sample diversity regarding professional background, career stage and organisational characteristics. Analysis was a reiterative process, led by two empirical researchers, who continuously examined emergent data and undertook cross-case comparative analysis. This was informed by team meetings, discussions with an expert advisory panel, and feedback from research participants and other senior NHS managers. Results: CEOs seek information and use knowledge all the time, for three main purposes: making decisions; accounting for decisions already made; and making sense. The last of these is by far the most common, with significant effort aimed at ‘connecting the dots’ and constructing (‘weaving’) a sense of the present and future for their own and others’ consumption. This is most often accomplished conversationally, including via an inner conversational circle of trusted colleagues. CEOs very rarely mobilise knowledge in the canonical way described in many of the existing models – though this does not make them poorly informed or irrational decision-makers. In particular, they rarely search, retrieve, consult and quote scientific and other forms of formalised evidence in person. Instead, they systematically ask others to do so and put in place the necessary mechanisms that allow them to progress from intuition to facts. Their knowledge and information work is therefore not so much about decision-making as about knowledgeability – understood as a personal and organisational capability: knowledge-ability. How CEOs’ knowledgeability is accomplished, why and in relation to what objects differs on the basis of a number of contextual factors, including the specific issue at hand, their personal style and the nature of everyday work. We define such an arrangement as the (personal) knowledgeability infrastructure of CEOs. Conclusions: By challenging prevailing models of evidence-based practice, our findings could inform the initiatives supporting the work of NHS CEOs and help them become more effective. There are a number of skills that new CEOs may need to learn, and a number of skills, behaviours and attitudes that may need to change over time according to changing circumstances, for a CEO, to conduct her job successfully. Our findings suggest a framework for critically examining how, and how effectively, NHS managers may make themselves knowledgeable given the demands of their jobs. Funding details: The National Institute for Health Research Health Services and Delivery Research programme.

Background: Collaborations for Leadership in Applied Health Research and Care (CLAHRCs) were an initiative of the National Institute for Health Research in response to a new research and development strategy in the NHS: ‘Best Research for Best Health’. They were designed to address the ‘second gap in translation’ identified by the Cooksey review; namely, the need to improve health care in the UK by translating clinical research into practice more effectively. Nine CLAHRCs, each encompassing a university in partnership with local NHS bodies, were funded over the period 2008–13. Aims: The aim of this report is to provide an independent and theory-based evaluation of CLAHRCs as a new form of networked innovation in the health sector. This evaluation is based on an intensive research study involving three CLAHRCs in the UK and three international organisations (one in the USA and two in Canada). This study was carried out over two overlapping time phases so as to capture changes in the CLAHRCs over time. Networked innovation in the health sector is conceptualised as involving the translation of knowledge via informal social networks. Methods: A mix of research methods was used to help ensure the validity and generalisability of the study. These methods addressed the development of each CLAHRC over time, over multiple levels of analysis, and with particular reference to the translation of knowledge across the groups involved, and the quality of the informal underpinning network ties that supported such translation. Research methods, therefore, included a qualitative enquiry based on case studies and case analysis, cognitive mapping methods, and social network analysis. Findings: Through our study, we found that each one of our samples of CLAHRCs appropriated the CLAHRC idea in a particular way, depending on their different interpretations or ‘visions’ of the CLAHRC’s role in knowledge translation (KT), and different operating models of how such visions could be achieved. These helped to shape the development of social networks (centralised vs. decentralised) and each CLAHRC’s approach to KT activity (‘bridging’ vs. ‘blurring’ the boundaries between professional groups). Through a comparative analysis, we develop an analytical model of the resultant capabilities which each case, including our international sites, developed for undertaking innovation, encompassing a combination of both ‘integrative capability’ (the ability to move back and forth between scientific evidence and practical application) and ‘relational capability’ (the ability of groups and organisations to work together). This extends previous models of KT by highlighting the effects of leadership and management, and the emergence of social network structures. We further highlight the implications of this analysis for policy and practice by discussing how network structures and boundary-spanning roles and activities can be tailored to different KT objectives. Conclusions: Different interpretations and enactments of the CLAHRC mission ultimately led to differing capabilities for KT among our studied initiatives. Further research could usefully explore how these different capabilities are produced, and how they may be more or less appropriate for particular national health-care settings, with a view to improving the design blueprint for future KT initiatives. Funding: The National Institute for Health Research Health Services and Delivery Research programme.

The introduction of a national electronic health record system to the National Health Service (NHS) has raised concerns about issues of data accuracy, security and confidentiality. The primary aim of this project was to identify the extent to which primary care patients will allow their local electronic record data to be shared on a national database. The secondary aim was to identify the extent of inaccuracies in the existing primary care records, which will be used to populate the new national Spine. Fifty consecutive attenders to one general practitioner were given a paper printout of their full primary care electronic health record. Participants were asked to highlight information which they would not want to be shared on the national electronic database of records, and information which they considered to be incorrect. There was a 62% response rate (31/50). Five of the 31 patients (16%) identified information that they would not want to be shared on the national record system. The items they identified related almost entirely to matters of pregnancy, contraception, sexual health and mental health. Ten respondents (32%) identified incorrect information in their records (some of these turned out to be correct on further investigation). The findings in relation to data sharing fit with the commonly held assumption that matters related to sensitive or embarrassing issues, which may affect how the patient will be treated by other individuals or institutions, are most likely to be censored by patients. Previous work on this has tended to ask hypothetical questions concerning data sharing rather than examine a real situation. A larger study of representative samples of patients in both primary and secondary care settings is needed to further investigate issues of data sharing and consent.

BackgroundLate Onset Alzheimer's disease (LOAD) is the leading cause of dementia. Recent large genome-wide association studies (GWAS) identified the first strongly supported LOAD susceptibility genes since the discovery of the involvement of APOE in the early 1990s. We have now exploited these GWAS datasets to uncover key LOAD pathophysiological processes.MethodologyWe applied a recently developed tool for mining GWAS data for biologically meaningful information to a LOAD GWAS dataset. The principal findings were then tested in an independent GWAS dataset.Principal findingsWe found a significant overrepresentation of association signals in pathways related to cholesterol metabolism and the immune response in both of the two largest genome-wide association studies for LOAD.SignificanceProcesses related to cholesterol metabolism and the innate immune response have previously been implicated by pathological and epidemiological studies of Alzheimer's disease, but it has been unclear whether those findings reflected primary aetiological events or consequences of the disease process. Our independent evidence from two large studies now demonstrates that these processes are aetiologically relevant, and suggests that they may be suitable targets for novel and existing therapeutic approaches.

Sexual orientation continues to be an explosive issue in American classrooms. Increasing the political knowledge of students can reduce the volatility of this explosive issue by increasing tolerance toward the lesbian, gay, bisexual, and transgender community. This relationship between political knowledge and political tolerance has been recognized since Stouffer's seminal work (1955) examining respondents' tolerance toward unpopular groups. Since then, a number of political scientists have worked to further our understanding of the link between political knowledge and political tolerance. This manuscript expands upon the existing literature by examining the effect of political knowledge on political tolerance toward same-sex marriage equality using 10-minute lectures involving the U.S. Constitution. Findings will show that significant changes can be made to political tolerance levels by using a limited amount of time and information to increase the political knowledge of survey respondents.