Publications
80 results found
Neves AL, Jacome C, Taveira-Gomes T, et al., 2021, Determinants of the use of health and fitness mobile apps by patients with asthma: secondary analysis of observational studies, Journal of Medical Internet Research, Vol: 23, Pages: 1-14, ISSN: 1438-8871
Background:Health and fitness apps have potential benefits to improve self-management and disease control among patients with asthma. However, inconsistent use rates have been reported across studies, regions, and health systems. A better understanding of the characteristics of users and nonusers is critical to design solutions that are effectively integrated in patients’ daily lives, and to ensure that these equitably reach out to different groups of patients, thus improving rather than entrenching health inequities.Objective:This study aimed to evaluate the use of general health and fitness apps by patients with asthma and to identify determinants of usage.Methods:A secondary analysis of the INSPIRERS observational studies was conducted using data from face-to-face visits. Patients with a diagnosis of asthma were included between November 2017 and August 2020. Individual-level data were collected, including age, gender, marital status, educational level, health status, presence of anxiety and depression, postcode, socioeconomic level, digital literacy, use of health services, and use of health and fitness apps. Multivariate logistic regression was used to model the probability of being a health and fitness app user. Statistical analysis was performed in R.Results:A total of 526 patients attended a face-to-face visit in the 49 recruiting centers and 514 had complete data. Most participants were ≤40 years old (66.4%), had at least 10 years of education (57.4%), and were in the 3 higher quintiles of the socioeconomic deprivation index (70.1%). The majority reported an overall good health status (visual analogue scale [VAS] score>70 in 93.1%) and the prevalence of anxiety and depression was 34.3% and 11.9%, respectively. The proportion of participants who reported using health and fitness mobile apps was 41.1% (n=211). Multivariate models revealed that single individuals and those with more than 10 years of education are more likely to use health and fitne
Neves AL, Li E, Serafini A, et al., 2021, Evaluating the impact of COVID-19 on the adoption of virtual care in general practice in 20 countries (inSIGHT): rationale and study protocol, Journal of Medical Internet Research, Vol: 10, Pages: 1-9, ISSN: 1438-8871
Background: In recent decades, virtual care has emerged as a promising option to support primary care delivery. However, despite the potential, adoption rates remained low. With the outbreak of COVID-19, it has suddenly been pushed to the forefront of care delivery. As we progress into the second year of the COVID-19 pandemic, there is a need and opportunity to review the impact remote care had in primary care settings and reassess its potential future role. This study aims to explore the perspectives of General Practitioners (GPs) / Family Doctors on a.) use of virtual care during the COVID-19 pandemic; b.) perceived impact on quality and safety of care; c.) essential factors for high-quality and sustainable use of virtual care in the future. Methods: Online cross-sectional questionnaire of GPs, distributed across 20 countries. The survey was hosted in Qualtrics and distributed using email, social media, and the researchers’ personal contact networks. General Practitioners were eligible for the survey if they were working mainly in primary care during the period of the COVID-19 pandemic. Descriptive statistical analysis will be performed for quantitative variables, and relationships between the use of virtual care and perceptions on impact on quality and safety of care, and participants’ characteristics, may be explored. Qualitative data (free-text responses) will be analysed using framework analysis. Results: Data collection took place from June to September 2020. As of this manuscript’s submission, a total of 1,605 GP respondents participated in the questionnaire. Further data analysis is currently ongoing. Discussion: The study will provide a comprehensive overview of the availability of virtual care technologies, perceived impact on quality and safety of care and essential factors for high-quality future use. In addition, a description of the under
Neves AL, Li E, Gupta PP, et al., 2021, Virtual primary care in high-income countries during the COVID-19 pandemic: policy responses and lessons for the future, European Journal of General Practice, Vol: 27, Pages: 241-247, ISSN: 1381-4788
Background: Telemedicine, once defined merely as the treatment of certain conditions remotely, has now often been supplanted in use by broader terms such as ‘virtual care’, in recognition of its increasing capability to deliver a diverse range of healthcare services from afar. With the unexpected onset of COVID-19, virtual care (e.g., telephone, video, online) has become essential to facilitating the continuation of primary care globally. Over several short weeks, existing healthcare policies have adapted quickly and empowered clinicians to use digital means to fulfil a wide range of clinical responsibilities which until then, have required face-to-face consultations. Objective: This paper aims to explore the virtual care policies and guidance material published during the initial months of the pandemic and examine their potential limitations and impact on transforming the delivery of primary care in high-income countries. Methods: A rapid review of publicly available national policies guiding the use of virtual care in General Practice was conducted. Documents were included if issued in the first six months of the pandemic (March to August of 2020) and focused primarily on high-income countries. Documents must have been issued by a national health authority, accreditation body, or professional organisation, and directly refer to the delivery of primary care. Results: We extracted six areas of relevance: primary care transformation during COVID-19, the continued delivery of preventative care, the delivery of acute care, remote triaging, funding & reimbursement, and security standards.Conclusion: Virtual care use in primary care saw a transformative change during the pandemic. However, despite the advances in the various governmental guidance offered, much work remains in addressing the shortcomings exposed during COVID-19 and strengthening viable policies so as to better incorporate novel technologies into the modern primary care clinical
Neves AL, Pereira Rodrigues P, Mulla A, et al., 2021, Using electronic health records to develop and validate a machine learning tool to predict type 2 diabetes outcomes: a study protocol, BMJ Open, Vol: 11, Pages: 1-5, ISSN: 2044-6055
Introduction: Type 2 diabetes (T2DM) is a major cause of blindness, kidney failure, myocardial infarction, stroke and lower limb amputation. We are still unable, however, to accurately predict or identify which patients are at a higher risk of deterioration. Most risk stratification tools do not account for novel factors such as socio-demographic determinants, self-management ability, or access to healthcare. Additionally, most tools are based in clinical trials, with limited external generalisability.Objective: The aim of this work is to design and validate a machine learning-based tool to identify patients with T2DM at high risk of clinical deterioration, based on a comprehensive set of patient level characteristics retrieved from a population health linked dataset.Sample and design: Retrospective cohort study of patients with diagnosis of T2DM on Jan 1st, 2015, with a 5-year follow-up. Anonymised electronic health care records from the Whole System Integrated Care (WSIC) database will be used. Preliminary outcomes: Outcome variables of clinical deterioration will include retinopathy, chronic renal disease, myocardial infarction, stroke, peripheral arterial disease, or death. Predictor variables will include sociodemographic and geographic data, patients’ ability to self-manage disease, clinical and metabolic parameters and healthcare service usage. Prognostic models will be defined using multi-dependence Bayesian networks (BN). The derivation cohort, comprising 80% of the patients, will be used to define the prognostic models. Model parameters will be internally validated by comparing the area under the receiver operating characteristic (ROC) curve (AUC) in the derivation cohort with those calculated from a leave-one-out and a 10 times 2-fold cross-validation. Ethics and dissemination: The study has received approvals from the Information Governance Committee at the Whole Systems Integrated Care. Results will be made available to people with type 2 diabetes
Shaw A, O'Brien N, Flott K, et al., 2021, The urgent need to identify and evaluate patient safety interventions in fragile, conflict-affected and vulnerable settings, Journal of Global Health, Vol: 11, ISSN: 2047-2978
Li E, Clarke J, Neves AL, et al., 2021, Electronic health records, interoperability, and patient safety in health systems of high-income countries: a systematic review protocol, BMJ Open, Vol: 11, ISSN: 2044-6055
Introduction The availability and routine use of electronic health records (EHRs) have become commonplace in healthcare systems of many high-income countries. While there is an ever-growing body ofliterature pertaining to EHR use, evidence surrounding the importance of EHR interoperability and its impact on patient safety remains less clear. There is therefore a need and opportunity to evaluate the evidence available regarding this relationship so as to better inform health informatics development and policies in the years to come. This systematic review aims to evaluate the impact of EHR interoperability on patient safety in health systems of high-income countries. Methods and analysis A systematic literature review will be conducted via a computerised search through four databases: PubMed, Embase, HMIC, and PsycInfo for relevant articles published between 2010 and 2020. Outcomes of interest will include: impact on patient safety, and the broader effects on health systems. Quality of the randomised quantitative studies will be assessed using Cochrane Risk of Bias Tool. Non-randomised papers will be evaluated with the Risk of Bias In Non Randomised Studies - of Interventions (ROBINS-I) tool. Drummond’s Checklist will be utilised for publications pertaining to economic evaluation. The National Institute for Health and Care Excellence (NICE) quality appraisal checklist will be used to assess qualitative studies. A narrative synthesis will be conducted for included studies, and the body of evidence will be summarised in a summary of findings table. Ethics and dissemination This review will summarise published studies with non-identifiable data and thus does not require ethical approval. Findings will be disseminated through preprints, open access peer reviewed publication, and conference presentations
Shaw A, O'Brien N, Flott K, et al., 2021, The urgent need to identify and evaluate patient safety interventions in fragile, conflict-affected and vulnerable settings, Journal of Global Health, ISSN: 2047-2978
Tsopra R, Frappe P, Streit S, et al., 2021, Reorganisation of GP surgeries during the COVID-19 outbreak: analysis of guidelines from 15 countries, BMC Family Practice, Vol: 22, Pages: 1-16, ISSN: 1471-2296
BackgroundGeneral practitioners (GPs) play a key role in managing the COVID-19 outbreak. However, they may encounter difficulties adapting their practices to the pandemic. We provide here an analysis of guidelines for the reorganisation of GP surgeries during the beginning of the pandemic from 15 countries.MethodsA network of GPs collaborated together in a three-step process: (i) identification of key recommendations of GP surgery reorganisation, according to WHO, CDC and health professional resources from health care facilities; (ii) collection of key recommendations included in the guidelines published in 15 countries; (iii) analysis, comparison and synthesis of the results.ResultsRecommendations for the reorganisation of GP surgeries of four types were identified: (i) reorganisation of GP consultations (cancelation of non-urgent consultations, follow-up via e-consultations), (ii) reorganisation of GP surgeries (area partitioning, visual alerts and signs, strict hygiene measures), (iii) reorganisation of medical examinations by GPs (equipment, hygiene, partial clinical examinations, patient education), (iv) reorganisation of GP staff (equipment, management, meetings, collaboration with the local community).ConclusionsWe provide here an analysis of guidelines for the reorganisation of GP surgeries during the beginning of the COVID-19 outbreak from 15 countries. These guidelines focus principally on clinical care, with less attention paid to staff management, and the area of epidemiological surveillance and research is largely neglected. The differences of guidelines between countries and the difficulty to apply them in routine care, highlight the need of advanced research in primary care. Thereby, primary care would be able to provide recommendations adapted to the real-world settings and with stronger evidence, which is especially necessary during pandemics.
Espinosa-Gonzalez AB, Neves AL, Fiorentino F, et al., 2021, Predicting Risk of Hospital Admission in Patients With Suspected COVID-19 in a Community Setting: Protocol for Development and Validation of a Multivariate Risk Prediction Tool, JMIR RESEARCH PROTOCOLS, Vol: 10, ISSN: 1929-0748
- Author Web Link
- Cite
- Citations: 8
Espinosa-Gonzalez AB, Neves AL, Fiorentino F, et al., 2021, Predicting Risk of Hospital Admission in Patients With Suspected COVID-19 in a Community Setting: Protocol for Development and Validation of a Multivariate Risk Prediction Tool (Preprint)
<sec> <title>BACKGROUND</title> <p>During the pandemic, remote consultations have become the norm for assessing patients with signs and symptoms of COVID-19 to decrease the risk of transmission. This has intensified the clinical uncertainty already experienced by primary care clinicians when assessing patients with suspected COVID-19 and has prompted the use of risk prediction scores, such as the National Early Warning Score (NEWS2), to assess severity and guide treatment. However, the risk prediction tools available have not been validated in a community setting and are not designed to capture the idiosyncrasies of COVID-19 infection.</p> </sec> <sec> <title>OBJECTIVE</title> <p>The objective of this study is to produce a multivariate risk prediction tool, RECAP-V1 (Remote COVID-19 Assessment in Primary Care), to support primary care clinicians in the identification of those patients with COVID-19 that are at higher risk of deterioration and facilitate the early escalation of their treatment with the aim of improving patient outcomes.</p> </sec> <sec> <title>METHODS</title> <p>The study follows a prospective cohort observational design, whereby patients presenting in primary care with signs and symptoms suggestive of COVID-19 will be followed and their data linked to hospital outcomes (hospital admission and death). Data collection will be carried out by primary care clinicians in four arms: North West London Clinical Commissioning Groups (NWL CCGs), Oxford-Royal College of General Practitioners (RCGP) Research and Surveillance Centre (RSC), Covid Clinical Assessment Service (CCAS), and South East London CCGs (Doctaly platform). The study involves the use o
van Dael J, Neves AL, Painter A, et al., 2021, Patient perspectives on the use of digital health services at a multi-site hospital in North-West London: a quantitative content analysis (Preprint), Journal of Medical Internet Research, ISSN: 1438-8871
Background:Following a large increase in the adoption of digital health amidst the COVID-19 crisis, there is increasing policy interest in the longer-term implementation of digital health services. Yet, there is still much unknown about the inherent quality of remote digital care, and research on patient perspectives remains comparatively small. Widespread usage amidst COVID-19 presents an important opportunity to better understand patients’ first-hand experiences with using these technologies.Objective:This study examined patients’ perspectives on main benefits and concerns with using digital health services in a large multi-site teaching hospital in North-West London during the COVID-19 crisis.Methods:Qualitative data was obtained from a larger questionnaire conducted during the COVID-19 pandemic on Care Information Exchange, which represents the largest patient-facing electronic health records in the English National Health Service. All responses were analysed using the framework analysis method. Quantitative content analysis was performed by mapping frequencies of reported themes across the respondent population.Results:Of all 6,766 respondents, 25.1% reported to have no concerns with digital health services, compared to 3.0% reporting no benefits. Reported benefits included: ease of access (37.1%), feeling empowered and informed (23.2%), improved timeliness of access and treatment (18.6%), healthcare capacity (11.5%), and care continuity amidst COVID-19 (7.4%). In contrast, reported concerns included issues around data security and privacy (17.5%), clinical uncertainty (17.0%), impact on patient-doctor relationship (11.9%), inequity in access and use (11.8%), misunderstanding health information (6.3%), and digital maturity (3.8%).Conclusions:Patients report many benefits with digital health services beyond immediate COVID-19 support, including improved access, timeliness, and enhanced healthcare capacity. Yet, some concerns remain, including some le
Freise L, Neves AL, Flott K, et al., 2021, Assessment of patients' ability to review electronic health record information to identify potential errors: cross-sectional web-based survey, JMIR Formative Research, Vol: 5, ISSN: 2561-326X
Background: Sharing personal health information positively impacts quality of care across several domains, and particularly, safety and patient-centeredness. Patients may identify and flag up inconsistencies in their electronic health records (EHRs), leading to improved information quality and patient safety. However, in order to identify potential errors, patients need to be able to understand the information contained in their EHRs.Objective: The aim of this study was to assess patients’ perceptions of their ability to understand the information contained in their EHRs and to analyze the main barriers to their understanding. Additionally, the main types of patient-reported errors were characterized.Methods: A cross-sectional web-based survey was undertaken between March 2017 and September 2017. A total of 682 registered users of the Care Information Exchange, a patient portal, with at least one access during the time of the study were invited to complete the survey containing both structured (multiple choice) and unstructured (free text) questions. The survey contained questions on patients’ perceived ability to understand their EHR information and therefore, to identify errors. Free-text questions allowed respondents to expand on the reasoning for their structured responses and provide more detail about their perceptions of EHRs and identifying errors within them. Qualitative data were systematically reviewed by 2 independent researchers using the framework analysis method in order to identify emerging themes.Results: A total of 210 responses were obtained. The majority of the responses (123/210, 58.6%) reported understanding of the information. The main barriers identified were information-related (medical terminology and knowledge and interpretation of test results) and technology-related (user-friendliness of the portal, information display). Inconsistencies relating to incomplete and incorrect information were reported in 12.4% (26/210) of the res
Olivia L, Roberts L, Jonathan R G, et al., 2021, “Opening a Can of Worms” - exploring public hopes and fears on healthcare data sharing: qualitative study, Journal of Medical Internet Research, Vol: 23, ISSN: 1438-8871
Background: Evidence suggests that health care data sharing may strengthen care coordination, improve quality and safety, and reduce costs. However, to achieve efficient and meaningful adoption of health care data-sharing initiatives, it is necessary to engage all stakeholders, from health care professionals to patients. Although previous work has assessed health care professionals’ perceptions of data sharing, perspectives of the general public and particularly of seldom heard groups have yet to be fully assessed.Objective: This study aims to explore the views of the public, particularly their hopes and concerns, around health care data sharing.Methods: An original, immersive public engagement interactive experience was developed—The Can of Worms installation—in which participants were prompted to reflect about data sharing through listening to individual stories around health care data sharing. A multidisciplinary team with expertise in research, public involvement, and human-centered design developed this concept. The installation took place in three separate events between November 2018 and November 2019. A combination of convenience and snowball sampling was used in this study. Participants were asked to fill self-administered feedback cards and to describe their hopes and fears about the meaningful use of data in health care. The transcripts were compiled verbatim and systematically reviewed by four independent reviewers using the thematic analysis method to identify emerging themes.Results: Our approach exemplifies the potential of using interdisciplinary expertise in research, public involvement, and human-centered design to tell stories, collect perspectives, and spark conversations around complex topics in participatory digital medicine. A total of 352 qualitative feedback cards were collected, each reflecting participants’ hopes and fears for health care data sharing. Thematic analyses identified six themes under hopes: enablement
Neves AL, Lawrence-Jones A, Naar L, et al., 2020, Multidisciplinary teams must work together to co-develop inclusive digital primary care for older people, British Journal of General Practice, Vol: 70, Pages: 582-582, ISSN: 0960-1643
Neves AL, Freise L, Laranjo L, et al., 2020, Impact of providing patients access to electronic health records on quality and safety of care: a systematic review and meta-analysis, BMJ Quality and Safety, Vol: 29, Pages: 1019-1032, ISSN: 2044-5415
Objective To evaluate the impact of sharing electronic health records (EHRs) with patients and map it across six domains of quality of care (ie, patient-centredness, effectiveness, efficiency, timeliness, equity and safety).Design Systematic review and meta-analysis.Data sources CINAHL, Cochrane, Embase, HMIC, Medline/PubMed and PsycINFO, from 1997 to 2017.Eligibility criteria Randomised trials focusing on adult subjects, testing an intervention consisting of sharing EHRs with patients, and with an outcome in one of the six domains of quality of care.Data analysis The Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines were followed. Title and abstract screening were performed by two pairs of investigators and assessed using the Cochrane Risk of Bias Tool. For each domain, a narrative synthesis of the results was performed, and significant differences in results between low risk and high/unclear risk of bias studies were tested (t-test, p<0.05). Continuous outcomes evaluated in four studies or more (glycated haemoglobin (HbA1c), systolic blood pressure (SBP) and diastolic blood pressure (DBP)) were pooled as weighted mean difference (WMD) using random effects meta-analysis. Sensitivity analyses were performed for low risk of bias studies, and long-term interventions only (lasting more than 12 months).Results Twenty studies were included (17 387 participants). The domain most frequently assessed was effectiveness (n=14), and the least were timeliness and equity (n=0). Inconsistent results were found for patient-centredness outcomes (ie, satisfaction, activation, self-efficacy, empowerment or health literacy), with 54.5% of the studies (n=6) demonstrating a beneficial effect. Meta-analyses showed a beneficial effect in effectiveness by reducing absolute values of HbA1c (unit: %; WMD=−0.316; 95% CI −0.540 to −0.093, p=0.005, I2=0%), which remained significant in the sensitivity analyses for low risk of bias s
Greenhalgh T, Thompson P, Weiringa S, et al., 2020, What items should be included in an early warning score for remote assessment of suspected COVID-19? qualitative and Delphi study, BMJ Open, Vol: 10, Pages: 1-26, ISSN: 2044-6055
Background To develop items for an early warning score (RECAP: REmote COVID-19 Assessment in Primary Care) for patients with suspected COVID-19 who need escalation to next level of care.Methods The study was based in UK primary healthcare. The mixed-methods design included rapid review, Delphi panel, interviews, focus groups and software development. Participants were 112 primary care clinicians and 50 patients recovered from COVID-19, recruited through social media, patient groups and snowballing. Using rapid literature review, we identified signs and symptoms which are commoner in severe COVID-19. Building a preliminary set of items from these, we ran four rounds of an online Delphi panel with 72 clinicians, the last incorporating fictional vignettes, collating data on R software. We refined the items iteratively in response to quantitative and qualitative feedback. Items in the penultimate round were checked against narrative interviews with 50 COVID-19 patients. We required, for each item, at least 80% clinician agreement on relevance, wording and cut-off values, and that the item addressed issues and concerns raised by patients. In focus groups, 40 clinicians suggested further refinements and discussed workability of the instrument in relation to local resources and care pathways. This informed design of an electronic template for primary care systems.Results The prevalidation RECAP-V0 comprises a red flag alert box and 10 assessment items: pulse, shortness of breath or respiratory rate, trajectory of breathlessness, pulse oximeter reading (with brief exercise test if appropriate) or symptoms suggestive of hypoxia, temperature or fever symptoms, duration of symptoms, muscle aches, new confusion, shielded list and known risk factors for poor outcome. It is not yet known how sensitive or specific it is.Conclusions Items on RECAP-V0 align strongly with published evidence, clinical judgement and patient experience. The validation phase of this study is ongoing.Tria
Costa-Santos C, Neves AL, Correia R, et al., 2020, COVID-19 surveillance - a descriptive study on data quality issues, Publisher: medRxiv
AbstractBackground High-quality data is crucial for guiding decision making and practicing evidence-based healthcare, especially if previous knowledge is lacking. Nevertheless, data quality frailties have been exposed worldwide during the current COVID-19 pandemic. Focusing on a major Portuguese surveillance dataset, our study aims to assess data quality issues and suggest possible solutions.Methods On April 27th 2020, the Portuguese Directorate-General of Health (DGS) made available a dataset (DGSApril) for researchers, upon request. On August 4th, an updated dataset (DGSAugust) was also obtained. The quality of data was assessed through analysis of data completeness and consistency between both datasets.Results DGSAugust has not followed the data format and variables as DGSApril and a significant number of missing data and inconsistencies were found (e.g. 4,075 cases from the DGSApril were apparently not included in DGSAugust). Several variables also showed a low degree of completeness and/or changed their values from one dataset to another (e.g. the variable ‘underlying conditions’ had more than half of cases showing different information between datasets). There were also significant inconsistencies between the number of cases and deaths due to COVID-19 shown in DGSAugust and by the DGS reports publicly provided daily.Conclusions The low quality of COVID-19 surveillance datasets limits its usability to inform good decisions and perform useful research. Major improvements in surveillance datasets are therefore urgently needed - e.g. simplification of data entry processes, constant monitoring of data, and increased training and awareness of health care providers - as low data quality may lead to a deficient pandemic control.
Neves AL, Smalley K, Freise L, et al., 2020, Sharing electronic health records with patients - Who is using the Care Information Exchange portal? A cross-sectional study., Publisher: JMIR Preprints
Background:Sharing electronic health records with patients has been shown to improve patient safety and quality of care, and patient portals represent a powerful and convenient tool to enhance patient access to their own healthcare data. However, adoption rates vary widely across countries and, within countries, across regions and health systems. A better understanding of the characteristics of users and non-users is critical to understand which groups remain underserved or excluded from using such tools.Objective:To identify the determinants of usage of the Care Information Exchange (CIE), a shared patient portal program in the United Kingdom.Methods:A cross-sectional study was conducted, using an online questionnaire. Individual-level data from patients registered in the CIE portal were collected, including age, gender, ethnicity, educational level, health status, postcode, and digital literacy (using the eHEALS tool). Registered individuals were defined as having an account created in the portal, independent of their actual use of the platform, and users were defined as having ever used the portal. Multivariate logistic regression was used to model the probability of being a user. Statistical analysis was performed in R, and Tableau ® was used to create maps of the proportion of CIE users by postcode area.Results:A total of 1,083 subjects replied to the survey (+186% of the estimated minimum target sample). The proportion of users was 61.6% (n=667), and within these, the majority (57.7%, n=385) used the portal at least once a month. To characterise the users and non-users of the system, we performed a sub-analysis of the sample, including only participants that have provided at least information regarding gender and age category. The sub-analysis included 650 individuals (59.8% women, 84.8% over 40 years). The majority of the subjects were white (76.6%, n=498), resident in London (64.7%, n=651), and lived in North West London (55.9%, n=363). Individuals with
Lounsbury O, Roberts L, Goodman JR, et al., 2020, “Opening a Can of Worms”: Public hopes and fears on healthcare data sharing. A qualitative study., Publisher: Journal of Medical Internet Research
Background:Evidence suggests that healthcare data sharing may strengthen care coordination, improve quality and safety, and reduce costs. However, in order to achieve efficient, meaningful adoption of healthcare data sharing initiatives, it is necessary to engage all stakeholders, from healthcare professionals to patients. Although previous work has assessed healthcare professionals’ perceptions of data sharing, the general public perspectives and particularly seldom heard groups, have yet to be fully assessed.Objective:This study aims to explore public views, particularly their hopes and concerns, around healthcare data sharing.Methods:An original, immersive public engagement interactive experience was developed - “The Can of Worms” installation - in which participants were prompted to reflect about data sharing through listening to individual stories around healthcare data sharing. A multidisciplinary team with expertise in research, public involvement and human-centered design developed the concept. The installation took place in three separate events, between Nov 2018 and Nov 2019. A combination of convenience and snowballing sampling was used. Participants were asked to fill self-administered feedback cards, and to describe their hopes and fears about the meaningful use of data in healthcare. The transcripts were compiled verbatim and systematically reviewed by four independent reviewers using the thematic analysis method to identify emerging themes.Results:Our approach exemplifies the potential of using interdisciplinary expertise in research, public involvement and human-centered design, to tell stories, collect perspectives, and spark conversation around complex topics in participatory digital medicine. A total of 352 qualitative feedback cards were collected, each reflecting participants’ ‘hopes’ and ‘fears’ for healthcare data sharing. Thematic analyses identified six themes under ‘hopes’: (1) ena
van Dael J, Reader T, Gillespie A, et al., 2020, Learning from complaints in healthcare: a realist review of academic literature, policy evidence, and frontline insights, BMJ Quality and Safety, Vol: 29, Pages: 684-695, ISSN: 2044-5415
Introduction A global rise in patient complaints has been accompanied by growing research to effectively analyse complaints for safer, more patient-centric care. Most patients and families complain to improve the quality of healthcare, yet progress has been complicated by a system primarily designed for case-by-case complaint handling.Aim To understand how to effectively integrate patient-centric complaint handling with quality monitoring and improvement.Method Literature screening and patient codesign shaped the review’s aim in the first stage of this three-stage review. Ten sources were searched including academic databases and policy archives. In the second stage, 13 front-line experts were interviewed to develop initial practice-based programme theory. In the third stage, evidence identified in the first stage was appraised based on rigour and relevance, and selected to refine programme theory focusing on what works, why and under what circumstances.Results A total of 74 academic and 10 policy sources were included. The review identified 12 mechanisms to achieve: patient-centric complaint handling and system-wide quality improvement. The complaint handling pathway includes (1) access of information; (2) collaboration with support and advocacy services; (3) staff attitude and signposting; (4) bespoke responding; and (5) public accountability. The improvement pathway includes (6) a reliable coding taxonomy; (7) standardised training and guidelines; (8) a centralised informatics system; (9) appropriate data sampling; (10) mixed-methods spotlight analysis; (11) board priorities and leadership; and (12) just culture.Discussion If healthcare settings are better supported to report, analyse and use complaints data in a standardised manner, complaints could impact on care quality in important ways. This review has established a range of evidence-based, short-term recommendations to achieve this.
Neves AL, Lygydakis H, Fontana G, 2020, The technology legacy of COVID-19 in primary care, BJGP Life
Neves AL, Freise L, Flott K, et al., 2020, Patients’ ability to review electronic health record information to identify potential errors: a pilot qualitative study, Publisher: JMIR Preprints
Sharing personal health information positively impacts quality of care across several domains, and particularly safety and patient-centeredness. Patients when reading their electronic health records (EHRs) may identify and flag up inconsistencies, leading to improved information quality and patient safety. However, in order to identify potential errors, patients need to be able to understand the information contained in their electronic records.Objective:This study assesses patients’ ability to identify errors present in their EHRs. Specifically, it evaluates the degree to which patients comprehend the information in their EHRs, what barriers exist to their understanding, and what, if any, errors patients can identify when given access to their EHRs.Methods:A cross-sectional online survey was undertaken between March 2017 and September 2017. A total of 682 registered users of the Care Information Exchange patient portal, with at least one access during the time of the study, were invited to complete the survey containing both structured (multiple choice) and unstructured (free-text) questions. The survey contained questions on patients’ perceived ability to understand their EHR information and therefore to identify errors. Free-text questions allowed respondents to expand on the reasoning behind their structured responses and provide more detail about their perceptions of EHRs and identifying errors within them. Qualitative data was systematically reviewed by two independent researchers using the framework analysis method, in order to identify emerging themes.Results:A total of 160 participants completed the survey (response rate=23.5%). The majority of participants (68.7%) reported they understood the information. The main barriers identified were information-related (medical terminology and knowledge, and interpretation of test results) and technology-related (user-friendliness of the portal, information display). Participants identified inconsistencie
Fernandes Neves Soares AL, Poovendran D, Freise L, et al., 2019, Healthcare professionals’ perspectives on the secondary use of health records to improve quality and safety of care: a qualitative study in England, Journal of Medical Internet Research, Vol: 21, ISSN: 1438-8871
Background: Healthcare professionals (HCP) are often patients’ first point of contact in what concerns the communication of the purposes, benefits, and risks of sharing electronic health records (EHR) for non-direct care purposes. Their engagement is fundamental to ensure patients’ buy-in and a successful implementation of healthcare data sharing schemes. However, their views on this subject are seldom evaluated. Objective: To explore HCP’ perspectives on the secondary uses of healthcare data in England. Specifically, we aimed to assess a) their knowledge on its purposes and b) the main concerns about data sharing processes.Methods: A total of 30 interviews were conducted between the 27th March and 7th April 2017 using an online interview platform, and following a topic guide with open-ended questions. The participants represented a variety of geographic locations across England (London, West Midlands, East of England, North East, Yorkshire and the Humber), covering both primary and secondary care services. The transcripts were compiled verbatim and systematically reviewed by two independent reviewers, using the framework analysis method to identify emerging themes.Results: HCP were knowledgeable about the possible secondary uses of data and highlighted its importance for 1) patient profiling and tailored care, 2) research, 3) quality assurance, 4) public health, and 5) service delivery planning purposes. Main concerns towards data sharing included 1) data accuracy, 2) patients’ willingness to share their records, 3) challenges on obtaining free and informed consent, 4) data security, 5) lack of adequacy / understanding of current policies, and 6) potential patient exposure and exploitation.Conclusions: These results suggest a high level of HCP understanding about the purposes of data sharing for secondary purposes, however, some concerns still remain. A better understanding of HCP’ knowledge and concerns could inform national communica
Harris M, Thulesius H, Neves AL, et al., 2019, How European primary care practitioners think the timeliness of cancer diagnosis can be improved: a thematic analysis, BMJ Open, Vol: 9, Pages: 1-10, ISSN: 2044-6055
Background National European cancer survival rates vary widely. Prolonged diagnostic intervals are thought to be a key factor in explaining these variations. Primary care practitioners (PCPs) frequently play a crucial role during initial cancer diagnosis; their knowledge could be used to improve the planning of more effective approaches to earlier cancer diagnosis.Objectives This study sought the views of PCPs from across Europe on how they thought the timeliness of cancer diagnosis could be improved.Design In an online survey, a final open-ended question asked PCPs how they thought the speed of diagnosis of cancer in primary care could be improved. Thematic analysis was used to analyse the data.Setting A primary care study, with participating centres in 20 European countries.Participants A total of 1352 PCPs answered the final survey question, with a median of 48 per country.Results The main themes identified were: patient-related factors, including health education; care provider-related factors, including continuing medical education; improving communication and interprofessional partnership, particularly between primary and secondary care; factors relating to health system organisation and policies, including improving access to healthcare; easier primary care access to diagnostic tests; and use of information technology. Re-allocation of funding to support timely diagnosis was seen as an issue affecting all of these.Conclusions To achieve more timely cancer diagnosis, health systems need to facilitate earlier patient presentation through education and better access to care, have well-educated clinicians with good access to investigations and better information technology, and adequate primary care cancer diagnostic pathway funding.
Abdul Rahim MBH, Chilloux J, Martinez-Gili L, et al., 2019, Diet-induced metabolic changes of the human gut microbiome: importance of short-chain fatty acids, methylamines and indoles, Acta Diabetologica, Vol: 56, Pages: 493-500, ISSN: 0940-5429
The human gut is a home for more than 100 trillion bacteria, far more than all other microbial populations resident on the body's surface. The human gut microbiome is considered as a microbial organ symbiotically operating within the host. It is a collection of different cell lineages that are capable of communicating with each other and the host and has an ability to undergo self-replication for its repair and maintenance. As the gut microbiota is involved in many host processes including growth and development, an imbalance in its ecological composition may lead to disease and dysfunction in the human. Gut microbial degradation of nutrients produces bioactive metabolites that bind target receptors, activating signalling cascades, and modulating host metabolism. This review covers current findings on the nutritional and pharmacological roles of selective gut microbial metabolites, short-chain fatty acids, methylamines and indoles, as well as discussing nutritional interventions to modulate the microbiome.
Neves AL, Rodriguez-Martinez A, Ayala R, et al., 2019, A network-based data-mining approach to investigate indole-related microbiota-host co-metabolism
<jats:title>Abstract</jats:title><jats:sec><jats:title>Motivation</jats:title><jats:p>Indoles have been shown to play a significant role in cardiometabolic disorders. While some individual bacterial species are known to produce indole-adducts, to our best knowledge no studies have made use of publicly available genome data to identify prokaryotes, specifically those associated with the human gut microbiota, contributing to the indole metabolic network.</jats:p></jats:sec><jats:sec><jats:title>Results</jats:title><jats:p>Here, we propose a computational strategy, comprising the integration of KEGG and BLAST, to identify prokaryote-specific metabolic reactions relevant for the production of indoles, as well as to predict new members of the human gut microbiota potentially involved in these reactions. By identifying relevant prokaryotic species for further validation studies<jats:italic>in vitro</jats:italic>, this strategy represents a useful approach for those interrogating the metabolism of other gut-derived microbial metabolites relevant to human health.</jats:p></jats:sec><jats:sec><jats:title>Availability</jats:title><jats:p>All R scripts and files (gut microbial dataset, FASTA protein sequences, BLASTP output files) are available from<jats:ext-link xmlns:xlink="http://www.w3.org/1999/xlink" ext-link-type="uri" xlink:href="https://github.com/AndreaRMICL/Microbial_networks">https://github.com/AndreaRMICL/Microbial_networks</jats:ext-link>.</jats:p></jats:sec><jats:sec><jats:title>Contact</jats:title><jats:p>ARM:<jats:email>andrea.rodriguez-martinez13@imperial.ac.uk</jats:email>; LH:<jats:email>lesley.hoyles@ntu.ac.uk</jats:email>.</jats:p></jats:sec>
Dumas M-E, Chilloux J, Myridakis A, et al., 2018, Microbiome inhibition of IRAK-4 by trimethylamine mediates metabolic and immune benefits in high fat diet-induced insulin resistance, 54th Annual Meeting of the European-Association-for-the-Study-of-Diabetes (EASD), Publisher: SPRINGER, Pages: S267-S268, ISSN: 0012-186X
Goodyear-Smith F, Mash R, 2018, How to Do Primary Care Research, Publisher: CRC Press, ISBN: 9781138499584
Aimed at emerging researchers, including those in developing countries, this book also addresses cutting edge and newly developing research methods, which will be of equal interest to more experienced researchers.
Neves AL, Carter AW, Freise L, et al., 2018, Impact of sharing electronic health records with patients on the quality and safety of care: a systematic review and narrative synthesis protocol, BMJ Open, Vol: 8, ISSN: 2044-6055
Introduction: Providing patients with access to electronic health records (EHRs) has emerged as a promising solution to improve quality of care and safety. As the efforts to develop and implement EHR-based data sharing platforms mature and scale up worldwide, there is a need to evaluate the impact of these interventions and to weigh their relative risks and benefits, in order to inform evidence-based health policies. The aim of this work is to systematically characterise and appraise the demonstrated benefits and risks of sharing EHR with patients, by mapping them across the six domains of quality of care of the Institute of Medicine (IOM) analytical framework (ie, patient-centredness, effectiveness, efficiency, timeliness, equity and safety).Methods and analysis: CINAHL, Cochrane, Embase, HMIC, Medline/PubMed and PsycINFO databases will be searched from January 1997 to August 2017. Primary outcomes will include measures related with the six domains of quality of care of the IOM analytical framework. The quality of the studies will be assessed using the Cochrane Risk of Bias Tool, the ROBINS-I Tool and the Drummond’s checklist. A narrative synthesis will be conducted for all included studies. Subgroup analysis will be performed by domain of quality of care domain and by time scale (ie, short-term, medium-term or long-term impact). The body of evidence will be summarised in a Summary of Findings table and its strength assessed according to the GRADE criteria.Ethics and dissemination: This review does not require ethical approval as it will summarise published studies with non-identifiable data. This protocol complies with the Preferred Reporting Items for Systematic Review and Meta-Analyses Protocols guidelines. Findings will be disseminated widely through peer-reviewed publication and conference presentations, and patient partners will be included in summarising the research findings into lay summaries and reports.PROSPERO registration number: CRD42017070092.
Lisa F, Neves AL, Flott K, et al., 2018, Patients’ Ability to Review Electronic Health Record Information to Identify Potential Errors: A Pilot Qualitative Study
Background:Evidence suggests that healthcare data sharing may strengthen care coordination, improve quality and safety, and reduce costs. However, in order to achieve efficient, meaningful adoption of healthcare data sharing initiatives, it is necessary to engage all stakeholders, from healthcare professionals to patients. Although previous work has assessed healthcare professionals’ perceptions of data sharing, the general public perspectives and particularly seldom heard groups, have yet to be fully assessed.Objective:This study aims to explore public views, particularly their hopes and concerns, around healthcare data sharing.Methods:An original, immersive public engagement interactive experience was developed - “The Can of Worms” installation - in which participants were prompted to reflect about data sharing through listening to individual stories around healthcare data sharing. A multidisciplinary team with expertise in research, public involvement and human-centered design developed the concept. The installation took place in three separate events, between Nov 2018 and Nov 2019. A combination of convenience and snowballing sampling was used. Participants were asked to fill self-administered feedback cards, and to describe their hopes and fears about the meaningful use of data in healthcare. The transcripts were compiled verbatim and systematically reviewed by four independent reviewers using the thematic analysis method to identify emerging themes.Results:Our approach exemplifies the potential of using interdisciplinary expertise in research, public involvement and human-centered design, to tell stories, collect perspectives, and spark conversation around complex topics in participatory digital medicine. A total of 352 qualitative feedback cards were collected, each reflecting participants’ ‘hopes’ and ‘fears’ for healthcare data sharing. Thematic analyses identified six themes under ‘hopes’: (1) ena
This data is extracted from the Web of Science and reproduced under a licence from Thomson Reuters. You may not copy or re-distribute this data in whole or in part without the written consent of the Science business of Thomson Reuters.