Impact of the cost-of-living crisis on patient preferences towards virtual consultations.

INTRODUCTION: Since 2021, the world has been facing a cost-of-living crisis which has negatively affected population health. Meanwhile, little is known about its impact on patients' preferences to access care. We aimed to analyse public preference for the modality of consultation (virtual vs face-to-face) before and after the onset of crisis and factors associated with these preferences. METHODS: An online cross-sectional survey was administered to the public in the United Kingdom, Germany, Italy and Sweden. McNemar tests were conducted to analyse pre- and post-crisis differences in preferences; logistic regression was used to examine the demographic factors associated with public preferences. RESULTS: Since the onset of crisis, the number of people choosing virtual consultations has increased in the United Kingdom (7.0% vs 9.5% P < 0.001), Germany (6.6% vs 8.6%, P < 0.008) and Italy (6.0% vs 9.8%, P < 0.001). Before the crisis, a stronger preference for virtual consultations was observed in people from urban areas (OR 1.28, 95% CI 1.05-1.56), while increasing age was associated with a lower preference for virtual care (OR 0.966, 95% CI 0.961-0.972). Younger people were more likely to switch to virtual care, while change to face-to-face was associated with younger age and lower income (OR 1.34, 95% CI 1.12-1.62). Older adults were less likely to change preference. CONCLUSIONS: Since the onset of the cost-of-living crisis, public preference for virtual consultations has increased, particularly in younger population. This contrasts with older adults and people with lower-than-average incomes. The rationale behind patients' preferences should be investigated to ensure patients can access their preferred modality of care.

Identifying benefits and concerns with using digital health services during COVID-19: Evidence from a hospital-based patient survey.

Despite large-scale adoption during COVID-19, patient perceptions on the benefits and potential risks with receiving care through digital technologies have remained largely unexplored. A quantitative content analysis of responses to a questionnaire (N = 6766) conducted at a multi-site acute trust in London (UK), was adopted to identify commonly reported benefits and concerns. Patients reported a range of promising benefits beyond immediate usage during COVID-19, including ease of access; support for disease and care management; improved timeliness of access and treatment; and better prioritisation of healthcare resources. However, in addition to known risks such as data security and inequity in access, our findings also illuminate some less studied concerns, including perceptions of compromised safety; negative impacts on patient-clinician relationships; and difficulties in interpreting health information provided through electronic health records and mHealth apps. Implications for future research and practice are discussed.

Strengths, Weaknesses, Opportunities, and Threats Analysis of the Use of Digital Health Technologies in Primary Health Care in the Sub-Saharan African Region: Qualitative Study.

BACKGROUND: Digital health technologies (DHTs) have become increasingly commonplace as a means of delivering primary care. While DHTs have been postulated to reduce inequalities, increase access, and strengthen health systems, how the implementation of DHTs has been realized in the sub-Saharan Africa (SSA) health care environment remains inadequately explored. OBJECTIVE: This study aims to capture the multidisciplinary experiences of primary care professionals using DHTs to explore the strengths and weaknesses, as well as opportunities and threats, regarding the implementation and use of DHTs in SSA primary care settings. METHODS: A combination of qualitative approaches was adopted (ie, focus groups and semistructured interviews). Participants were recruited through the African Forum for Primary Care and researchers' contact networks using convenience sampling and included if having experience with digital technologies in primary health care in SSA. Focus and interviews were conducted, respectively, in November 2021 and January-March 2022. Topic guides were used to cover relevant topics in the interviews, using the strengths, weaknesses, opportunities, and threats framework. Transcripts were compiled verbatim and systematically reviewed by 2 independent reviewers using framework analysis to identify emerging themes. The COREQ (Consolidated Criteria for Reporting Qualitative Research) checklist was used to ensure the study met the recommended standards of qualitative data reporting. RESULTS: A total of 33 participants participated in the study (n=13 and n=23 in the interviews and in focus groups, respectively; n=3 participants participated in both). The strengths of using DHTs ranged from improving access to care, supporting the continuity of care, and increasing care satisfaction and trust to greater collaboration, enabling safer decision-making, and hastening progress toward universal health coverage. Weaknesses included poor digital literacy, health inequalities, lack of human resources, inadequate training, lack of basic infrastructure and equipment, and poor coordination when implementing DHTs. DHTs were perceived as an opportunity to improve patient digital literacy, increase equity, promote more patient-centric design in upcoming DHTs, streamline expenditure, and provide a means to learn international best practices. Threats identified include the lack of buy-in from both patients and providers, insufficient human resources and local capacity, inadequate governmental support, overly restrictive regulations, and a lack of focus on cybersecurity and data protection. CONCLUSIONS: The research highlights the complex challenges of implementing DHTs in the SSA context as a fast-moving health delivery modality, as well as the need for multistakeholder involvement. Future research should explore the nuances of these findings across different technologies and settings in the SSA region and implications on health and health care equity, capitalizing on mixed-methods research, including the use of real-world quantitative data to understand patient health needs. The promise of digital health will only be realized when informed by studies that incorporate patient perspective at every stage of the research cycle.

The Impact of Virtual Consultations on the Quality of Primary Care: Systematic Review.

BACKGROUND: The adoption of virtual consultations, catalyzed by the COVID-19 pandemic, has transformed the delivery of primary care services. Owing to their rapid global proliferation, there is a need to comprehensively evaluate the impact of virtual consultations on all aspects of care quality. OBJECTIVE: This study aims to evaluate the impact of virtual consultations on the quality of primary care. METHODS: A total of 6 databases were searched. Studies that evaluated the impact of virtual consultations, for any disease, were included. Title and abstract screening and full-text screening were performed by 2 pairs of investigators. Risk of bias was assessed using the Mixed Methods Appraisal Tool. A narrative synthesis of the results was performed. RESULTS: In total, 30 studies (5,469,333 participants) were included in this review. Our findings suggest that virtual consultations are equally effective to or more effective than face-to-face care for the management of certain conditions, including mental illness, excessive smoking, and alcohol consumption. Overall, 4 studies indicated positive impacts on some aspects of patient-centeredness; however, a negative impact was noted on patients' perceived autonomy support (ie, the degree to which people perceive those in positions of authority to be autonomy supportive). Virtual consultations may reduce waiting times, lower patient costs, and reduce rates of follow-up in secondary and tertiary care settings. Evidence for the impact on clinical safety is extremely limited. Evidence regarding equity was considerably mixed. Overall, it appears that virtual care is more likely to be used by younger, female patients, with disparities among other subgroups depending on contextual factors. CONCLUSIONS: Our systematic review demonstrated that virtual consultations may be as effective as face-to-face care and have a potentially positive impact on the efficiency and timeliness of care; however, there is a considerable lack of evidence on the impacts on patient safety, equity, and patient-centeredness, highlighting areas where future research efforts should be devoted. Capitalizing on real-world data, as well as clinical trials, is crucial to ensure that the use of virtual consultations is tailored according to patient needs and is inclusive of the intended end users. Data collection methods that are bespoke to the primary care context and account for patient characteristics are necessary to generate a stronger evidence base to inform future virtual care policies.

Safety implications of remote assessments for suspected COVID-19: qualitative study in UK primary care.

BACKGROUND: The introduction of remote triage and assessment early in the pandemic raised questions about patient safety. We sought to capture patients and clinicians' experiences of the management of suspected acute COVID-19 and generate wider lessons to inform safer care. SETTING AND SAMPLE: UK primary healthcare. A subset of relevant data was drawn from five linked in-pandemic qualitative studies. The data set, on a total of 87 participants recruited via social media, patient groups and snowballing, comprised free text excerpts from narrative interviews (10 survivors of acute COVID-19), online focus groups (20 patients and 30 clinicians), contributions to a Delphi panel (12 clinicians) and fieldnotes from an online workshop (15 patients, clinicians and stakeholders). METHODS: Data were uploaded onto NVivo. Coding was initially deductive and informed by WHO and Institute of Medicine frameworks of quality and safety. Further inductive analysis refined our theorisation using a wider range of theories-including those of risk, resilience, crisis management and social justice. RESULTS: In the early weeks of the pandemic, patient safety was compromised by the driving logic of 'stay home' and 'protect the NHS', in which both patients and clinicians were encouraged to act in a way that helped reduce pressure on an overloaded system facing a novel pathogen with insufficient staff, tools, processes and systems. Furthermore, patients and clinicians observed a shift to a more transactional approach characterised by overuse of algorithms and decision support tools, limited empathy and lack of holistic assessment. CONCLUSION: Lessons from the pandemic suggest three key strategies are needed to prevent avoidable deaths and inequalities in the next crisis: (1) strengthen system resilience (including improved resourcing and staffing; support of new tools and processes; and recognising primary care's role as the 'risk sink' of the healthcare system); (2) develop evidence-based triage and scoring systems; and (3) address social vulnerability.

Assessment of Clinical Information Quality in Digital Health Technologies: International eDelphi Study.

BACKGROUND: Digital health technologies (DHTs), such as electronic health records and prescribing systems, are transforming health care delivery around the world. The quality of information in DHTs is key to the quality and safety of care. We developed a novel clinical information quality (CLIQ) framework to assess the quality of clinical information in DHTs. OBJECTIVE: This study explored clinicians' perspectives on the relevance, definition, and assessment of information quality dimensions in the CLIQ framework. METHODS: We used a systematic and iterative eDelphi approach to engage clinicians who had information governance roles or personal interest in information governance; the clinicians were recruited through purposive and snowball sampling techniques. Data were collected using semistructured online questionnaires until consensus was reached on the information quality dimensions in the CLIQ framework. Responses on the relevance of the dimensions were summarized to inform decisions on retention of the dimensions according to prespecified rules. Thematic analysis of the free-text responses was used to revise definitions and the assessment of dimensions. RESULTS: Thirty-five clinicians from 10 countries participated in the study, which was concluded after the second round. Consensus was reached on all dimensions and categories in the CLIQ framework: informativeness (accuracy, completeness, interpretability, plausibility, provenance, and relevance), availability (accessibility, portability, security, and timeliness), and usability (conformance, consistency, and maintainability). A new dimension, searchability, was introduced in the availability category to account for the ease of finding needed information in the DHTs. Certain dimensions were renamed, and some definitions were rephrased to improve clarity. CONCLUSIONS: The CLIQ framework reached a high expert consensus and clarity of language relating to the information quality dimensions. The framework can be used by health care managers and institutions as a pragmatic tool for identifying and forestalling information quality problems that could compromise patient safety and quality of care. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2021-057430.

Perceptions of Quality of Care Among Users of a Web-Based Patient Portal: Cross-sectional Survey Analysis.

BACKGROUND: Web-based patient portals enable patients access to, and interaction with, their personal electronic health records. However, little is known about the impact of patient portals on quality of care. Users of patient portals can contribute important insights toward addressing this knowledge gap. OBJECTIVE: We aimed to describe perceived changes in the quality of care among users of a web-based patient portal and to identify the characteristics of patients who perceive the greatest benefit of portal use. METHODS: A cross-sectional web-based survey study was conducted to understand patients' experiences with the Care Information Exchange (CIE) portal. Patient sociodemographic data were collected, including age, sex, ethnicity, educational level, health status, geographic location, motivation to self-manage, and digital health literacy (measured by the eHealth Literacy Scale). Patients with experience using CIE, who specified both age and sex, were included in these analyses. Relevant survey items (closed-ended questions) were mapped to the Institute of Medicine's 6 domains of quality of care. Users' responses were examined to understand their perceptions of how portal use has changed the overall quality of their care, different aspects of care related to the 6 domains of care quality, and patient's satisfaction with care. Multinomial logistic regression analyses were performed to identify patient characteristics associated with perceived improvements in overall care quality and greater satisfaction with care. RESULTS: Of 445 CIE users, 38.7% (n=172) reported that the overall quality of their care was better; 3.2% (n=14) said their care was worse. In the patient centeredness domain, 61.2% (273/445) of patients felt more in control of their health care, and 53.9% (240/445) felt able to play a greater role in decision-making. Regarding timeliness, 40.2% (179/445) of patients reported they could access appointments, diagnoses, and treatment more quickly. Approximately 30% of CIE users reported better care related to the domains of effectiveness (123/445, 27.6%), safety (138/445, 31%), and efficiency (174/445, 28.6%). Regarding equity, patients self-reporting higher digital health literacy (odds ratio 2.40, 95% CI 1.07-5.42; P=.03) and those belonging to ethnic minority groups (odds ratio 2.27, 95% CI 1.26-3.73; P<.005) were more likely to perceive improvements in care quality. Across ethnic groups, Asian and British Asian patients perceived the greatest benefits. Increased frequency of CIE use also predicted perceived better care quality and greater satisfaction with care. CONCLUSIONS: A large proportion of CIE users perceived better care quality and greater satisfaction with care, although many portal users reported no change. The most favorable perceived improvements related to the domain of patient centeredness. With national policy directed toward addressing health disparities, patient portals could be valuable in improving care quality for ethnic minority groups. Future research should test the causal relationship between patient portal use and care quality.

Remote COVID-19 Assessment in Primary Care (RECAP) risk prediction tool: derivation and real-world validation studies.

BACKGROUND: Accurate assessment of COVID-19 severity in the community is essential for patient care and requires COVID-19-specific risk prediction scores adequately validated in a community setting. Following a qualitative phase to identify signs, symptoms, and risk factors, we aimed to develop and validate two COVID-19-specific risk prediction scores. Remote COVID-19 Assessment in Primary Care-General Practice score (RECAP-GP; without peripheral oxygen saturation [SpO2]) and RECAP-oxygen saturation score (RECAP-O2; with SpO2). METHODS: RECAP was a prospective cohort study that used multivariable logistic regression. Data on signs and symptoms (predictors) of disease were collected from community-based patients with suspected COVID-19 via primary care electronic health records and linked with secondary data on hospital admission (outcome) within 28 days of symptom onset. Data sources for RECAP-GP were Oxford-Royal College of General Practitioners Research and Surveillance Centre (RCGP-RSC) primary care practices (development set), northwest London primary care practices (validation set), and the NHS COVID-19 Clinical Assessment Service (CCAS; validation set). The data source for RECAP-O2 was the Doctaly Assist platform (development set and validation set in subsequent sample). The two probabilistic risk prediction models were built by backwards elimination using the development sets and validated by application to the validation datasets. Estimated sample size per model, including the development and validation sets was 2880 people. FINDINGS: Data were available from 8311 individuals. Observations, such as SpO2, were mostly missing in the northwest London, RCGP-RSC, and CCAS data; however, SpO2 was available for 1364 (70·0%) of 1948 patients who used Doctaly. In the final predictive models, RECAP-GP (n=1863) included sex (male and female), age (years), degree of breathlessness (three point scale), temperature symptoms (two point scale), and presence of hypertension (yes or no); the area under the curve was 0·80 (95% CI 0·76-0·85) and on validation the negative predictive value of a low risk designation was 99% (95% CI 98·1-99·2; 1435 of 1453). RECAP-O2 included age (years), degree of breathlessness (two point scale), fatigue (two point scale), and SpO2 at rest (as a percentage); the area under the curve was 0·84 (0·78-0·90) and on validation the negative predictive value of low risk designation was 99% (95% CI 98·9-99·7; 1176 of 1183). INTERPRETATION: Both RECAP models are valid tools to assess COVID-19 patients in the community. RECAP-GP can be used initially, without need for observations, to identify patients who require monitoring. If the patient is monitored and SpO2 is available, RECAP-O2 is useful to assess the need for treatment escalation. FUNDING: Community Jameel and the Imperial College President's Excellence Fund, the Economic and Social Research Council, UK Research and Innovation, and Health Data Research UK.

Digital technologies in primary care: Implications for patient care and future research.

Digital health is the convergence of digital technologies with health, healthcare, living, and society. Contrasting with the slow trend during the last decades, in the last few years, we have observed an expansion and widespread adoption and implementation. In this paper, we revisit the potential that digital health presents for the delivery of higher quality, safer and more equitable care. Focussing on three examples - patient access to health records, big data analytics, and virtual care - we discuss the emerging opportunities and challenges of digital health, and how they can change primary care. We also reflect on the implications for research to evaluate digital interventions: the need to evaluate clear outcomes in light of the six dimensions of quality of care (patient-centredness, efficiency, effectiveness, safety, timeliness, and equity); to define clear populations to understand what works and for which patients; and to involve different stakeholders in the formulation and evaluation of the research questions. Finally, we share five wishes for the future of digital care in General Practice: the involvement of primary healthcare professionals and patients in the design and maintenance of digital solutions; improving infrastructure, support, and training; development of clear regulations and best practice standards; ensuring patient safety and privacy; and working towards more equitable digital solutions, that leave no one behind.

Use and impact of virtual primary care on quality and safety: The public's perspectives during the COVID-19 pandemic.

INTRODUCTION: With the onset of Coronavirus disease (COVID-19), primary care has swiftly transitioned from face-to-face to virtual care, yet it remains largely unknown how this has impacted the quality and safety of care. We aim to evaluate patient use of virtual primary care models during COVID-19, including change in uptake, perceived impact on the quality and safety of care and willingness of future use. METHODOLOGY: An online cross-sectional survey was administered to the public across the United Kingdom, Sweden, Italy and Germany. McNemar tests were conducted to test pre- and post-pandemic differences in uptake for each technology. One-way analysis of variance was conducted to examine patient experience ratings and perceived impacts on healthcare quality and safety across demographic characteristics. RESULTS: Respondents (n = 6326) reported an increased use of telephone consultations ( + 6.3%, p < .001), patient-initiated services ( + 1.5%, n = 98, p < 0.001), video consultations ( + 1.4%, p < .001), remote triage ( + 1.3, p < 0.001) and secure messaging systems ( + 0.9%, p = .019). Experience rates using virtual care technologies were higher for men (2.4 ± 1.0 vs. 2.3 ± 0.9, p < .001), those with higher literacy (2.8 ± 1.0 vs. 2.3 ± 0.9, p < .001), and participants from Germany (2.5 ± 0.9, p < .001). Healthcare timeliness and efficiency were the dimensions most often reported as being positively impacted by virtual technologies (60.2%, n = 2793 and 55.7%, n = 2,401, respectively), followed by effectiveness (46.5%, n = 1802), safety (45.5%, n = 1822), patient-centredness (45.2%, n = 45.2) and equity (42.9%, n = 1726). Interest in future use was highest for telephone consultations (55.9%), patient-initiated digital services (56.1%), secure messaging systems (43.4%), online triage (35.1%), video consultations (37.0%) and chat consultations (30.1%), although significant variation was observed between countries and patient characteristics. DISCUSSION: Future work must examine the drivers and determinants of positive experiences using remote care to co-create a supportive environment that ensures equitable adoption and use. Comparative analysis between countries and health systems offers the opportunity for policymakers to learn from best practices internationally.

Determinants of Use of the Care Information Exchange Portal: Cross-sectional Study.

BACKGROUND: Sharing electronic health records with patients has been shown to improve patient safety and quality of care. Patient portals represent a convenient tool to enhance patient access to their own health care data. However, the success of portals will only be possible through sustained adoption by its end users: the patients. A better understanding of the characteristics of users and nonusers is critical for understanding which groups remain excluded from using such tools. OBJECTIVE: This study aims to identify the determinants of the use of the Care Information Exchange, a shared patient portal program in the United Kingdom. METHODS: A cross-sectional study was conducted using a web-based questionnaire. Information collected included age, gender, ethnicity, educational level, health status, postcode, and digital literacy. Registered individuals were defined as having had an account created in the portal, independent of their actual use of the platform; 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 Care Information Exchange users by postcode area. RESULTS: A total of 1083 participants replied to the survey (186% of the estimated minimum target sample). The proportion of users was 61.58% (667/1083). Among these, most (385/667, 57.7%) used the portal at least once a month. To characterize the system's users and nonusers, we performed a subanalysis of the sample, including only participants who had provided at least information regarding gender and age. The subanalysis included 650 individuals (389/650, 59.8% women; 551/650, 84.8% >40 years). Most participants were White (498/650, 76.6%) and resided in London (420/650, 64.6%). Individuals with a higher educational degree (undergraduate and professional, or postgraduate and higher) had higher odds of being a portal user (adjusted odds ratio [OR] 1.58, 95% CI 1.04-2.39 and OR 2.38, 95% CI 1.42-4.02, respectively) compared with those with a secondary degree or below. Higher digital literacy scores (≥30) were associated with higher odds of being a user (adjusted OR 2.96, 95% CI 2.02-4.35). Those with a good overall health status had lower odds of being a user (adjusted OR 0.58, 95% CI 0.37-0.91). CONCLUSIONS: This work adds to the growing body of evidence highlighting the importance of educational aspects (educational level and digital literacy) in the adoption of patient portals. Further research should not only describe but also systematically address these inequalities through patient-centered interventions aimed at reducing the digital divide. Health care providers and policy makers must partner in investing and delivering strategic programs that improve access to technology and digital literacy in an effort to improve digital inclusion and reduce inequities in the delivery of care.

Electronic Health Records, Interoperability and Patient Safety in Health Systems of High-income Countries: A Systematic Review Protocol.

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 of literature pertaining to their 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, Health Management Information Consortium 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 tool. Drummond's Checklist will be used for publications pertaining to economic evaluation. The National Institute for Health and Care Excellence 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 publications, and conference presentations. PROSPERO REGISTRATION NUMBER: CRD42020209285.

Assessment of Patients' Ability to Review Electronic Health Record Information to Identify Potential Errors: Cross-sectional Web-Based Survey.

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 responses. CONCLUSIONS: While the majority of the responses affirmed the understanding of the information contained within the EHRs, both technology and information-based barriers persist. There is a potential to improve the system design to better support opportunities for patients to identify errors. This is with the aim of improving the accuracy, quality, and timeliness of the information held in the EHRs and a mechanism to further engage patients in their health care.

Opening a "Can of Worms" to Explore the Public's Hopes and Fears About Health Care Data Sharing: Qualitative Study.

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 of personal access and ownership, increased interoperability and collaboration, generation of evidence for better and safer care, improved timeliness and efficiency, delivery of more personalized care, and equality. The five main fears identified included inadequate security and exploitation, data inaccuracy, distrust, discrimination and inequality, and less patient-centered care. CONCLUSIONS: This study sheds new light on the main hopes and fears of the public regarding health care data sharing. Importantly, our results highlight novel concerns from the public, particularly in terms of the impact on health disparities, both at international and local levels, and on delivering patient-centered care. Incorporating the knowledge generated and focusing on co-designing solutions to tackle these concerns is critical to engage the public as active contributors and to fully leverage the potential of health care data use.

What items should be included in an early warning score for remote assessment of suspected COVID-19? qualitative and Delphi study.

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. TRIAL REGISTRATION NUMBER: NCT04435041.

Impact of providing patients access to electronic health records on quality and safety of care: a systematic review and meta-analysis.

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 studies (WMD= -0.405; 95% CI -0.711 to -0.099), and long-term interventions only (WMD=-0.272; 95% CI -0.482 to -0.062). A significant reduction of absolute values of SBP (unit: mm Hg) was found but lost in sensitivity analysis for studies with low risk of bias (WMD= -1.375; 95% CI -2.791 to 0.041). No significant effect was found for DBP (unit: mm Hg; WMD=-0.918; 95% CI -2.078 to 0.242, p=0.121, I2=0%). Concerning efficiency, most studies (80%, n=4) found either a reduction of healthcare usage or no change. A beneficial effect was observed in a range of safety outcomes (ie, general adherence, medication safety), but not in medication adherence. The proportion of studies reporting a beneficial effect did not differ between low risk and high/unclear risk studies, for the domains evaluated. DISCUSSION: Our analysis supports that sharing EHRs with patients is effective in reducing HbA1c levels, a major predictor of mortality in type 2 diabetes (mean decrease of -0.405, unit: %) and could improve patient safety. More studies are necessary to enhance meta-analytical power and assess the impact in other domains of care. PROTOCOL REGISTRATION: http://www.crd.york.ac.uk/PROSPERO (CRD42017070092).

How European primary care practitioners think the timeliness of cancer diagnosis can be improved: a thematic analysis.

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.