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BackgroundDiagnostic error is a global patient safety priority.ObjectivesTo estimate the incidence, origins and avoidable harm of diagnostic errors in English general practice. Diagnostic errors were defined as missed opportunities to make a correct or timely diagnosis based on the evidence available (missed diagnostic opportunities, MDOs).MethodRetrospective medical record reviews identified MDOs in 21 general practices. In each practice, two trained general practitioner reviewers independently conducted case note reviews on 100 randomly selected adult consultations performed during 2013–2014. Consultations where either reviewer identified an MDO were jointly reviewed.ResultsAcross 2057 unique consultations, reviewers agreed that an MDO was possible, likely or certain in 89 cases or 4.3% (95% CI 3.6% to 5.2%) of reviewed consultations. Inter-reviewer agreement was higher than most comparable studies (Fleiss’ kappa=0.63). Sixty-four MDOs (72%) had two or more contributing process breakdowns. Breakdowns involved problems in the patient–practitioner encounter such as history taking, examination or ordering tests (main or secondary factor in 61 (68%) cases), performance and interpretation of diagnostic tests (31; 35%) and follow-up and tracking of diagnostic information (43; 48%). 37% of MDOs were rated as resulting in moderate to severe avoidable patient harm.ConclusionsAlthough MDOs occurred in fewer than 5% of the investigated consultations, the high numbers of primary care contacts nationally suggest that several million patients are potentially at risk of avoidable harm from MDOs each year. Causes of MDOs were frequently multifactorial, suggesting the need for development and evaluation of multipronged interventions, along with policy changes to support them.

Plain English summary There is evidence in the literature showing that involving patients and the public in health research can have a positive influence on quality, relevance and impact of research. However, patients and the public are not always involved in all stages of the research. There is often no explanation as to why they were only involved in some stages of the research and not others. Additionally, there is often no description of researchers’ or PPI contributor’s experiences of involvement. This also raises another issue which is a lack of recording of impact such involvement can have on the research process and the people involved in the research. In this paper, we present what PPI in a doctoral research should look like by providing a detailed description of how involvement occurred from pre-funding to dissemination stages of the research process. We provide some practical examples of how this was done and how involving patients made a difference to the research project. Finally, we present reflections from the patient and public contributors and the researcher on involvement in this project along with some recommendations for future doctoral and postdoctoral researchers considering involving public/patient contributors in their research. Abstract Background Patient and Public Involvement (PPI) has received considerable attention in the last two decades and working in partnership and co-design have now become a prerequisite in health services research in the UK. However, there is a lack of evidence and consistency in recording PPI and related activities. Researchers and PPI contributors are encouraged to record and reflect on the impact of PPI on research. There is significant variation in the way PPI contributors are involved, and it is often limited to some stages of the research cycle than others, without any reflections on the decision-making process for such involvement or any transferable learning. This has resulted in failure to provide a narrative of the research journey including researchers’ and PPI contributors’ personal reflections of involvement. Therefore, this paper provides an exemplar of what PPI in a doctoral research context should look like by providing a detailed account of how PPI was embedded in a doctoral research project, the PPI contributors and researcher’s reflections and key recommendations for involving people specifically in doctoral research. Methods A reflective approach was taken using data from PPI contributor and researcher notes, e-mail correspondence, meeting notes. Data is presented narratively to reflect on the experiences of involvement throughout the research cycle. Results Undertaking PPI enhanced the quality and relevance of the doctoral research, contributed to the recruitment of study participants, data analysis and dissemination. Building trust and relationships with PPI contributors was key to continued involvement throughout the life of the project and beyond. There is a need to adopt flexible approaches rather than a one-size-fits-all model when working with PPI contributors. Reflections by PPI contributors and the researcher emphasises that involvement was a rewarding experience. Conclusions This paper contributes to the wider literature by providing an exemplar of how PPI can be embedded in doctoral research and demonstrates the value of PPI to the research process and the individuals involved. We also present recommendations on how PPI can be incorporated by doctoral and postdoctoral researchers when planning PPI in their research project.

Background Despite growing positive evidence supporting the potential utility of differential diagnostic generator (DDX) tools, uptake has been limited in terms of geography and settings and calls have been made to test such tools in wider routine clinical settings. This study aims to evaluate the feasibility and utility of clinical use of Isabel, an electronic DDX tool, in a United Kingdom (UK) general practice setting. Methods Mixed methods. Feasibility and utility were assessed prospectively over a 6-month period via: usage statistics, survey as well as interview data generated from clinicians before and after Isabel was available for clinical use. Normalisation process theory (NPT) was utilised as a sensitising concept in the data collection and analysis of the qualitative data. Results Usage was extremely limited (n = 18 searches). Most potential users did not utilise the program and of those that did (n = 6), usage was restricted and did not alter subsequent patient management. Baseline interview findings indicated some prior awareness of DDX tools and ambivalent views with regards to potential utility. Post-use interviews supported analytic data and indicated low usage due to a range of endogenous (professional) and exogenous (organisational) factors. Conclusions In its current form, this small exploratory study suggests that Isabel is a tool that is unlikely to be utilised on a routine basis in primary care, but may have potential utility for diagnostic support in (1) education/training and (2) rare and diagnostically complex cases.

Background The number of individuals with a visual impairment in the UK was estimated a few years ago to be around 1.8 million. People can be visually impaired from birth, childhood, early adulthood or later in life. Those with visual impairment are subject to health inequities and increased risk for patient safety incidents in comparison to the general population. They are also known to be at an increased risk of experiencing medication errors compared to those without visual impairment. In view of this, this review aims to understand the issues of medication safety for VI people. Methods/design Four electronic bibliographic databases will be searched: MEDLINE, Embase, PsycInfo and CINAHL. Our search strategy will include search combinations of two key blocks of terms. Studies will not be excluded based on design. Included studies will be empirical studies. They will include studies that relate to both medication safety and visual impairment. Two reviewers (SG and LR) will screen all the titles and abstracts. SG, LR, RM, SCS and PL will perform study selection and data extraction using standard forms. Disagreements will be resolved through discussion or third party adjudication. Data to be collected will include study characteristics (year, objective, research method, setting, country), participant characteristics (number, age, gender, diagnoses), medication safety incident type and characteristics. Discussion The review will summarise the literature relating to medication safety and visual impairment.

Patient and public involvement (PPI) is integral to research on patient safety in the NIHR Greater Manchester Patient Safety Translational Research Centre (NIHR GMPSTRC), and is central to our patient safety research within our theme focusing on people in marginalised groups. Due to the impact of COVID-19, researchers had to adapt how they do PPI. For marginalised groups, remote working and digital adaptations (the key adaptations made in accessing and utilising health services in the United Kingdom during COVID-19) can potentially lead to further marginalisation of people already marginalised and provide new barriers to others. This editorial showcases three case examples of PPI with marginalised groups during COVID-19, these are with: (1) adults with vision impairments, (2) adults and carers with lived experience of self-harm and/ or suicide and (3) adults with lived experience of homelessness. In these case examples, we focus on challenges relating to key aspects of PPI during the pandemic. First, setting up a PPI advisory group and secondly maintaining relationships and effective PPI with a pre-existing advisory group. We contrast these examples using more traditional ways of 'doing PPI' i.e. involving public contributors in various stages of the research cycle, with a more fully 'co-produced' approach to research when developing a new patient safety intervention. Important considerations for PPI with marginalised groups during COVID-19 include: how to avoid exacerbating the digital divide when using video conferencing for PPI, the need for enhanced awareness around flexibility and resources, and the value of working closely with specialist charities to enable adaptations that are sensitive to the changed circumstances and needs of PPI contributors.The National Institute of Health Research (NIHR) Greater Manchester Patient Safety Translational research Centre (GMPSTRC) carries out research to improve patient safety. We work in partnership with patients and members of the public to plan, manage, design, and carry out the research. This is labelled as patient and public involvement. A key area of GMPSTRC research focuses on people who may be marginalised from healthcare and potentially suffer increased patient safety risks relative to the general population. COVID-19 impacted on research in multiple ways, notably how researchers work with members of the public. Remote working via the use of internet enabled technology has now become more commonplace, although this raises concerns about digital exclusion and how to address barriers when face-to-face PPI is not possible. This article showcases three examples of how researchers and public contributors with lived experience have adapted to working together during the COVID-19 pandemic. These case examples are: (1) setting up a public involvement group for developing an intervention to reduce medication errors for adults with vision impairments; (2) working with a pre-existing group of public contributors who are adults and carers with lived experience of self-harm and/or suicide; and (3) working with a charity called Groundswell who train and support researchers with lived experience of homelessness. Challenges during COVID-19 have been making video conferencing meetings accessible to members who have a range of different needs, and addressing the digital divide by allowing members flexibility in how they contribute to research. The article provides examples of how these challenges were addressed.

ObjectivesPeople experiencing homelessness are frequent users of secondary care. Currently, there is no study of potentially preventable admissions for homeless patients in England. We aim to estimate the number of potentially preventable hospital admissions for homeless patients and compare to housed patients with similar characteristics.DesignRetrospective matched cohort study.SettingHospitals in England.Participants16 161 homeless patients and 74 780 housed patients aged 16–75 years who attended an emergency department (ED) in England in 2013/2014, matched on the basis of age, sex, ED attended and primary diagnosis.Primary and secondary outcome measuresAnnual counts of admissions, emergency admissions, ambulatory care-sensitive (ACS) emergency admissions, acute ACS emergency admissions and chronic ACS emergency admissions over the following 4 years (2014/2015–2017/2018). We additionally compare the prevalence of specific ACS conditions for homeless and housed patients.ResultsMean admissions per 1000 patients per year were 470 for homeless patients and 230 for housed patients. Adjusted for confounders, annual admissions were 1.79 times higher (incident rate ratio (IRR)=1.79; 95% CI 1.69 to 1.90), emergency admissions 2.08 times higher (IRR=2.08; 95% CI 1.95 to 2.21) and ACS admissions 1.65 times higher (IRR=1.65; 95% CI 1.51 to 1.80), compared with housed patients. The effect was greater for acute (IRR=1.78; 95% CI 1.64 to 1.93) than chronic (IRR=1.45; 95% CI 1.27 to 1.66) ACS conditions. ACS conditions that were relatively more common for homeless patients were cellulitis, convulsions/epilepsy and chronic angina.ConclusionsHomeless patients use hospital services at higher rates than housed patients, particularly emergency admissions. ACS admissions of homeless patients are higher which suggests some admissions may be potentially preventable with improved access to primary care. However, these admissions comprise a small share of total admissions.

Background: The number of individuals with a visual impairment in the UK was estimated a few years ago to be around 1.8 million People can be visually impaired from birth, childhood, early adulthood or later in life. Those with visual impairment are subject to health inequities and increased risk for patient safety incidents in comparison to the general population. They are also known to be at an increased risk of experiencing medication errors compared to those without visual impairment. In view of this, this review aims to understand the issues of medication safety for VI people. Methods/design: Four electronic bibliographic databases will be searched: MEDLINE, Embase, PsycInfo and CINAHL. Our search strategy will include search combinations of two key blocks of terms. Studies will not be excluded based on design. Included studies will be empirical studies. They will include studies that relate to both medication safety and visual impairment. Two reviewers (SG and LR) will screen all the titles and abstracts. SG, LR, RM, SCS and PL will perform study selection and data extraction using standard forms. Disagreements will be resolved through discussion or third party adjudication. Data to be collected include study characteristics (year, objective, research method, setting, country), participant characteristics (number, age, gender, diagnoses), medication safety incident type and characteristics. Discussion: The review will summarise the literature relating to medication safety and visual impairment.

BACKGROUND: To date, research on the indirect impact of the COVID-19 pandemic on the health of the population and the health-care system is scarce. We aimed to investigate the indirect effect of the COVID-19 pandemic on general practice health-care usage, and the subsequent diagnoses of common physical and mental health conditions in a deprived UK population.METHODS: We did a retrospective cohort study using routinely collected primary care data that was recorded in the Salford Integrated Record between Jan 1, 2010, and May 31, 2020. We extracted the weekly number of clinical codes entered into patient records overall, and for six high-level categories: symptoms and observations, diagnoses, prescriptions, operations and procedures, laboratory tests, and other diagnostic procedures. Negative binomial regression models were applied to monthly counts of first diagnoses of common conditions (common mental health problems, cardiovascular and cerebrovascular disease, type 2 diabetes, and cancer), and corresponding first prescriptions of medications indicative of these conditions. We used these models to predict the expected numbers of first diagnoses and first prescriptions between March 1 and May 31, 2020, which were then compared with the observed numbers for the same time period.FINDINGS: Between March 1 and May 31, 2020, 1073 first diagnoses of common mental health problems were reported compared with 2147 expected cases (95% CI 1821 to 2489) based on preceding years, representing a 50·0% reduction (95% CI 41·1 to 56·9). Compared with expected numbers, 456 fewer diagnoses of circulatory system diseases (43·3% reduction, 95% CI 29·6 to 53·5), and 135 fewer type 2 diabetes diagnoses (49·0% reduction, 23·8 to 63·1) were observed. The number of first prescriptions of associated medications was also lower than expected for the same time period. However, the gap between observed and expected cancer diagnoses (31 fewer; 16·0% reduction, -18·1 to 36·6) during this time period was not statistically significant.INTERPRETATION: In this deprived urban population, diagnoses of common conditions decreased substantially between March and May 2020, suggesting a large number of patients have undiagnosed conditions. A rebound in future workload could be imminent as COVID-19 restrictions ease and patients with undiagnosed conditions or delayed diagnosis present to primary and secondary health-care services. Such services should prioritise the diagnosis and treatment of these patients to mitigate potential indirect harms to protect public health.FUNDING: National Institute of Health Research.

BACKGROUND There is a growing interest in using mobile apps to support communication, safety, and well-being. Evidence directly from people with dementia regarding the usability, usefulness, and relevance of mobile apps is limited. OBJECTIVE This paper describes the protocol of a study that will evaluate an app designed for supporting communication, safety, and well-being among people living with dementia. The study aims to understand if the app can enhance safety through improved communication among users. METHODS The study will use participatory qualitative methods over 3 cycles of evaluation with co-designers (service users, their families, and care practitioners). The study will be developed in partnership with a specialist home care service in England. Purposive case selection will be performed to ensure that the cases exemplify differences in experiences. The app will be evaluated in a walk-through workshop by people living with early-stage dementia and then trialed at home by up to 12 families in a try-out cycle. An amended version will be evaluated in a final walk-through workshop during cycle 3. Data will be collected from at least 4 data sources during the try-out phase and analyzed thematically. An explanatory multiple case study design will be used to synthesize and present the evidence from the three cycles, drawing on the Normalization Process Theory to support the interpretation of the findings. RESULTS The study is ready to be implemented, but it was paused to protect vulnerable individuals during the COVID-19 pandemic in 2020. The findings will be particularly relevant for understanding how to support vulnerable people living in the community during social distancing and the period following the pandemic as well as for providing insight into the challenges of social isolation that arise from living with dementia. CONCLUSIONS Evaluating a mobile app for enhancing communication, safety, and well-being among people living with dementia contributes to the key ambitions enshrined in policy and practice—championing the use of digital technology and supporting people with dementia to live safely in their own homes. The study will involve co-designers living with dementia, so that the voices of service users can be used to highlight the benefits and challenges of assistive technology and shape the future development of apps that enhance safety by improving communication. INTERNATIONAL REGISTERED REPORT PRR1-10.2196/19543

Background There is a growing interest in using mobile apps to support communication, safety, and well-being. Evidence directly from people with dementia regarding the usability, usefulness, and relevance of mobile apps is limited. Objective This paper describes the protocol of a study that will evaluate an app designed for supporting communication, safety, and well-being among people living with dementia. The study aims to understand if the app can enhance safety through improved communication among users. Methods The study will use participatory qualitative methods over 3 cycles of evaluation with co-designers (service users, their families, and care practitioners). The study will be developed in partnership with a specialist home care service in England. Purposive case selection will be performed to ensure that the cases exemplify differences in experiences. The app will be evaluated in a walk-through workshop by people living with early-stage dementia and then trialed at home by up to 12 families in a try-out cycle. An amended version will be evaluated in a final walk-through workshop during cycle 3. Data will be collected from at least 4 data sources during the try-out phase and analyzed thematically. An explanatory multiple case study design will be used to synthesize and present the evidence from the three cycles, drawing on the Normalization Process Theory to support the interpretation of the findings. Results The study is ready to be implemented, but it was paused to protect vulnerable individuals during the COVID-19 pandemic in 2020. The findings will be particularly relevant for understanding how to support vulnerable people living in the community during social distancing and the period following the pandemic as well as for providing insight into the challenges of social isolation that arise from living with dementia. Conclusions Evaluating a mobile app for enhancing communication, safety, and well-being among people living with dementia contributes to the key ambitions enshrined in policy and practice—championing the use of digital technology and supporting people with dementia to live safely in their own homes. The study will involve co-designers living with dementia, so that the voices of service users can be used to highlight the benefits and challenges of assistive technology and shape the future development of apps that enhance safety by improving communication. International Registered Report Identifier (IRRID) PRR1-10.2196/19543

Background Marginalised groups (‘populations outside of mainstream society’) experience severe health inequities, as well as increased risk of experiencing patient safety incidents. To date however no review exists to identify, map and analyse the literature in this area in order to understand 1) which marginalised groups have been studied in terms of patient safety research, 2) what the particular patient safety issues are for such groups and 3) what contributes to or is associated with these safety issues arising. Methods Scoping review. Systematic searches were performed across six electronic databases in September 2019. The time frame for searches of the respective databases was from the year 2000 until present day. Results The searches yielded 3346 articles, and 67 articles were included. Patient safety issues were identified for fourteen different marginalised patient groups across all studies, with 69% (n = 46) of the studies focused on four patient groups: ethnic minority groups, frail elderly populations, care home residents and low socio-economic status. Twelve separate patient safety issues were classified. Just over half of the studies focused on three issues represented in the patient safety literature, and in order of frequency were: medication safety, adverse outcomes and near misses. In total, 157 individual contributing or associated factors were identified and mapped to one of seven different factor types from the Framework of Contributory Factors Influencing Clinical Practice within the London Protocol. Patient safety issues were mostly multifactorial in origin including patient factors, health provider factors and health care system factors. Conclusions This review highlights that marginalised patient groups are vulnerable to experiencing a variety patient safety issues and points to a number of gaps. The findings indicate the need for further research to understand the intersectional nature of marginalisation and the multi-dimensional nature of patient safety issues, for groups that have been under-researched, including those with mental health problems, communication and cognitive impairments. Such understanding provides a basis for working collaboratively to co-design training, services and/or interventions designed to remove or at the very least minimise these increased risks. Trial registration Not applicable for a scoping review.

Additional file 1. Search Strategy

Background: Never events (NEs) are serious preventable patient safety incidents and are a component of formal quality and safety improvement (Q&SI) policies in the United Kingdom and elsewhere. A preliminary list of NEs for UK general practice has been developed, but the frequency of these events, or their acceptability to general practitioner (GPs) as a Q&SI approach, is currently unknown. The study aims to estimate (1) the frequency of 10 NEs occurring within GPs' own practices and (2) the extent to which the NE approach is perceived as acceptable for use.\ud \ud Methods: General practitioners were surveyed, and mixed-effects logistic regression models examined the relationship between GP opinions of NE, estimates of NE frequency, and the characteristics of the GPs and their practices.\ud \ud Results: Responses from 556 GPs in 412 practices were analyzed. Most participants (70%-88%, depending on the NE) agreed that the described incident should be designated as a NE. Three NEs were estimated to have occurred in less than 4% of practices in the last year; however, two NEs were estimated to have occurred in 45% to 61% of the practices. General practitioners reporting that a NE had occurred in their practice in the last year were significantly less likely to agree with the designation as a NE compared with GPs not reporting a NE (odds ratio, 0.42; 95% CI = 0.36-0.49).\ud \ud Conclusions: The NE approach may have Q&SI potential for general practice, but further work to adapt the concept and content is required.

Background Health systems must transition from catering primarily to acute conditions, to meet the increasing burden of chronic disease and multimorbidity. Case management is a popular method of integrating care, seeking to accomplish this goal. However, the intervention has shown limited effectiveness. We explore whether the effects of case management vary in patients with different types of multimorbidity. Methods We extended a previously published quasi-experiment (difference-in-differences analysis) with 2049 propensity matched case management intervention patients, adding an additional interaction term to determine subgroup effects (difference-in-difference-in-differences) by different conceptualisations of multimorbidity: 1) Mental-physical comorbidity versus others; 2) 3+ chronic conditions versus 5 versus others. Outcome measures included a variety of secondary care utilisation and cost measures. Results The majority of conceptualisations suggested little to no difference in effect between subgroups. Where results were significant, the vast majority of effect sizes identified in either direction were very small. The trend across the majority of the results appeared to show very slight increases of admissions with treatment for the most complex patients (highest risk). The exceptions to this, patients with a Charlson index >5 may benefit slightly more from case management with decreased ACSC admissions (effect size (ES): −0.06) and inpatient re-admissions (30 days, ES: −0.05), and patients with only cardiovascular/metabolic cluster conditions may benefit slightly more with decreased inpatient non-elective admissions (ES: −0.12). Only the three significant estimates for the musculoskeletal disorder cluster met the minimum requirement for at least a ‘small’ effect. Two of these estimates in particular were very large. This cluster represented only 0.5% of the total patients analysed, however, so is hugely vulnerable to the effects of outliers, and makes us very cautious of interpreting these as ‘real’ effects. Conclusions Our results indicate no appropriate multimorbidity subgroup at which to target the case management intervention in terms of secondary care utilisation/cost outcomes. The most complex, highest risk patients may legitimately require hospitalisation, and the intensified management may better identify these unmet needs. End of life patients (e.g. Charlson index >5)/those with only conditions particularly amenable to primary care management (e.g. cardiovascular/metabolic cluster conditions) may benefit very slightly more than others.

ObjectivesTo examine general practitioner (GP) understanding of the never event (NE) concept in general practice, and to identify potential enablers and barriers to implementation in UK general practice.DesignQualitative study using focus groups. The data were analysed thematically and were informed by the normalisation process theory.SettingGeneral practice in Northwest England and Southwest Scotland.Participants25 GPs took part in five focus groups. 13 GPs were female and 12 male with an age range of 28–60.ResultsThe NE approach of avoiding serious preventable adverse outcomes from healthcare fitted with participants expectations of the delivery of care but the implementation of strategies to prevent the specific NE was considered complex and variable. The main themes identified participants’ understandings and perceived limitations of the NE concept; the embedded layers of responsibility to implement NE within practices and the work required for implementation within general practices. Participants’ accounts highlighted the differential nature of work in general practice and that the implementation of initiatives to address specific NE should be situated within a learning and systems approach to implementation. Some NEs were considered more relevant and amenable to simple solutions than others which could influence implementation.ConclusionsThe NE concept was considered overall an important approach to help address key primary care patient safety issues. The utility of individual NEs may vary depending on the complexity of the initiatives that would be needed to manage related risks to as low as reasonably practicable.

Qualitative investigations of lived experience of illness and concurrent experiences of healthcare service use are a key topic for health psychology. Theories investigating access and utilisation of services are often either too reductionist to account for all relevant aspects, or too complex to pragmatically apply. In addition, theories based on structural factors such as service availability may overlook crucial psychological and sociological factors. Theories which view formal entry into healthcare services as the initial point of healthcare use risk overlooking crucial healthcare decisions. Similarly, theories which focus solely on the role of either service–users or healthcare professionals in healthcare use may obscure the importance and context of synergistic decisions. The theoretical framework of candidacy can address a variety of access and utilisation factors from varying conceptual backgrounds and identify practical targets for intervention within healthcare services. This article outlines the value and explanatory potential of this framework for research investigating access and lived experiences of healthcare services, provides a brief critique of its relevance to two classic health psychology models (namely illness representations and transtheoretical stages of change) and suggests future directions for research.

The future of primary care research (PCR) has recently undergone critical analyses from major thought leaders in the field, resulting in a mixed view of its prospects.1–3 In response, as members of the Oxford International Primary Care Research Leadership programme’s 2016–2018 cohort (http://www.oxfordleadershipprogramme.co.uk/), we provide our mid-career analysis of the future of the field, as well as making some recommendations for supporting a positive outlook.4 We are committed to the tenet that primary care is the foundation of efficient and high-quality health systems around the world. High-quality primary care is underpinned by high-quality research. We need research to evaluate policy, practice, service design, the role of health technology in care delivery, and innovative solutions to ever-pressing workforce issues. A strong pipeline of primary care researchers is required to deliver this agenda. In this piece, we briefly reflect on where we feel the key blockage in the pipeline is, the ‘mid-career primary care researcher’, and make recommendations on how we might ‘unblock’ it. Primary care encompasses a distinct and complex model of health care, with core values of first-contact, person-centred, comprehensive, and ongoing care that underpin how we design, deliver, and monitor care for most of our population here in the UK and in many other countries.4 In order to respond to the increasingly complex needs of patients (for example, ageing and multimorbidity), primary care researchers are challenged to pursue complex, innovative, and wide-reaching research agendas.5–8 The complexity of such concepts reflects the fact that a variety of researchers are typically engaged in these issues: clinicians, nurses, pharmacists, psychologists, sociologists, anthropologists, statisticians, health economists, and those who simply term themselves ‘health services researchers’. Indeed, we see the diversity of researchers routinely involved in PCR as another core strength, with multidisciplinary research teams working …

BackgroundPatient complaints can provide valuable insights into the quality and safety of clinical care. Studies examining the epidemiology of complaints in out-of-hours general practice internationally are limited.AimTo characterise patient complaints in an out-of-hours general practice setting.Design and settingRetrospective cohort study of patient complaints to an out-of-hours service provider in Dublin, Ireland, over a 5-year period (2011–2016). This comprises nurse-led telephone triage and GP consultations for patients with urgent problems.MethodA modified version of the UK Healthcare Complaints Analysis Tool (HCAT) was utilised to code complaints, which were reviewed independently in duplicate by two academic GPs.ResultsOf 445 598 telephone contacts, 303 085 resulted in face-to-face GP consultations. Of 234 patients who made 298 complaints, 185 (79%) related to GP care. The remainder related to nurse triage, other staff, and management issues. A total of 109 (46%) related to children aged ≤18 years, and 134 (58%) of complainants were female. There were 0.61 complaints per 1000 GP consultations. Most complaints (n = 126, 42%) were in relation to clinical care problems, largely diagnosis and prescribing. Common themes included unmet management expectations and clinical examination dissatisfaction. Inter-rater reliability was 90% (κ statistic 0.84, 95% confidence interval = 0.80 to 0.88). Following internal investigation, 158 (85%) of GP-related complaints were managed effectively by the out-of-hours service.ConclusionThe majority of complaints related to clinical care problems and were successfully managed locally. Expectation management may be an important way to mitigate the risk of complaints.

Background Diagnostic uncertainty is one of the largest contributory factors to the occurrence of diagnostic errors across most specialties in medicine and arguably uncertainty is greatest in primary care due to the undifferentiated symptoms primary care physicians are often presented with. Physicians can respond to diagnostic uncertainty in various ways through the interplay of a series of cognitive, emotional and ethical reactions. The consequences of such uncertainty however can impact negatively upon the primary care practitioner, their patients and the wider healthcare system. Understanding the nature of the existing empirical literature in relation to managing diagnostic uncertainty in primary medical care is a logical and necessary first step in order to understand what solutions are already available and/or to aid the development of any training or feedback aimed at better managing this uncertainty. This review is the first to characterize the existing empirical literature on managing diagnostic uncertainty in primary care. Methods Sixteen databases were systematically searched from inception to present with no restrictions. Hand searches of relevant websites and reference lists of included studies were also conducted. Two authors conducted abstract/article screening and data extraction. PRISMA guidelines were adhered to. Results Ten studies met the inclusion criteria. A narrative and conceptual synthesis was undertaken under the premises of critical reviews. Results suggest that studies have focused on internal factors (traits, skills and strategies) associated with managing diagnostic uncertainty with only one external intervention identified. Cognitive factors ranged from the influences of epistemological viewpoints to practical approaches such as greater knowledge of the patient, utilizing resources to hand and using appropriate safety netting techniques. Emotional aspects of uncertainty management included clinicians embracing uncertainty and working with provisional diagnoses. Ethical aspects of uncertainty management centered on communicating diagnostic uncertainties with patients. Personality traits and characteristics influenced each of the three domains. Conclusions There is little empirical evidence on how uncertainty is managed in general practice. However we highlight how the extant literature can be conceptualised into cognitive, emotional and ethical aspects of uncertainty which may help clinicians be more aware of their own biases as well as provide a platform for future research. Trial registration PROSPERO registration: CRD42015027555 Electronic supplementary material The online version of this article (doi:10.1186/s12875-017-0650-0) contains supplementary material, which is available to authorized users.

Background: Patient and public involvement (PPI) in research is growing internationally but little is known about black and minority ethnic (BME) involvement and the factors influencing their involvement in health and social care research. Objectives: To characterise and critique the empirical literature on BME-PPI involvement in health and social care research.Search strategy: Systematic searches of six electronic bibliographic databases were undertaken, utilising both MeSH and free-text terms to identify international empirical literature published between 1990-2016. Inclusion criteria: All study designs that report primary data that involved BME groups in health or social care research. Screening was conducted by two reviewers.Data extraction and synthesis: Data extraction and quality appraisal were performed independently. Data extraction focused on the level(s) of PPI involvement and where PPI activity occurred in the research cycle. Studies were quality assessed using the guidelines for measuring the quality and impact of user involvement in research. Data were analysed using a narrative approach.Main results: Forty-five studies were included with the majority undertaken in the USA focusing on African Americans and indigenous populations. Involvement most commonly occurred during the research design phase, and least in data analysis and interpretation. Conclusion: This is the first systematic review investigating BME involvement in health and social care research internationally. While there is a widespread support for BME involvement, this is limited to particular phases of the research and particular ethnic sub-groups. There is a need to understand factors that influence BME involvement in all parts of the research cycle.

Table S2. Quality appraisal of qualitative studies. This table demonstrates the quality of the qualitative studies included in the review. (DOCX 14Â kb)

Table S1. Quality appraisal of cross-sectional studies. This table demonstrates the quality of the cross-sectional studies included in the review. (DOCX 14Â kb)

Intervention to control matching, Multimorbidity measures, Results table. Table comparing intervention and control characteristics before and after matching. List of conditions and ICD-10 codes used to construct the multimorbidity measures. Detailed regression results table, the basis for results shown in Fig. 1 in the main manuscript. (PDF 644Â kb)

Search strategy. The search strategy run in the electronic databases used for the review. (DOCX 16Â kb)

Background Multiple Sclerosis (MS) is a chronic, degenerative condition with an estimated UK prevalence of 100 000. Contact with health-care services is frequent and long-term; however, little research has investigated the experiences of health care for MS in the UK. Objective The aim of this systematic narrative review was to critically review qualitative studies reporting patients' experiences of health-care services in the UK. Search strategy EMBASE, CINAHL, Medline, psychINFO and MS Society databases were searched with no date restrictions using search terms denoting ‘Multiple Sclerosis’, ‘health-care services’, ‘patient’, ‘experience’ and ‘qualitative research’. Snowballing and hand searching of journals were used. Inclusion criteria Studies were included if they used qualitative methods of data collection and analysis to investigate adult patient's experiences of health-care services for MS in the UK. Data extraction and synthesis Data were extracted independently and analysed jointly by two reviewers. Studies were appraised for the quality of evidence described using the Critical Appraisal Skills Programme's qualitative tool. Due to the breadth of areas covered, the data were too heterogeneous for a synthesis and are presented as a narrative review. Main results and discussion Five studies were included. Studies primarily investigated diagnosis or palliative care. Themes of importance were the emotional experience of health care, continuity of care and access to services, and support from health-care professionals. Studies were mainly poor quality and focussed on a homogenous sample. Conclusions This study provides the first review of the UK evidence base of experiences of health care for MS. Future research should investigate experiences of care after diagnosis in a more varied sample of participants.

Individual-focused self-management interventions are one response to both an ageing society and the purported increase in chronic conditions. They tend to draw on psychological theories in self-management interventions, but over-reliance on these theories can reinforce a narrow focus on specified attitudinal and behavioural processes, omitting aspects of living with a chronic condition. While advances have been made in health behaviour change theory and practice, scant attention has been paid to the social, with the question of social context remaining under-theorised and under-explored empirically. This is particularly noticeable in trials of behaviour change interventions for self-management. The common sociological critique is that these ignore context and thus no explanation can be given as to why, for whom and under what circumstances a treatment works. Conversely, sociologists are criticised for offering no positive suggestions as to how context can be taken into account and for over-emphasising context with the risk of inhibiting innovation. This article provides an overview of these issues and provides examples of how context can be incorporated into the rigid method of trials of self-management for chronic conditions. We discuss modifications to both trial interventions and design that make constructive use of the concept of context.

Objective A lack of agreement between clinician and patient priorities can impact the clinician–patient relationship, treatment concordance, and potential health outcomes. Studies have suggested that patients with osteoarthritis (OA) may prioritize comorbidities over their OA, but as yet no explicit systematic exploration of OA patients' priorities in relation to comorbidities exists. This study aims to explore how patients prioritize their OA among their conditions, which factors underlie this prioritization, and whether and why these priorities change over time. Methods A secondary analysis of qualitative data was conducted utilizing 4 existing data sets collated from the 3 research centers involved. Purposive sampling provided a sample of 30 participants who all had OA and comorbidities. The research team collectively coded and analyzed the data thematically. Results Three groups of patients emerged from the analysis. The 2 smaller groups had stable priorities (where OA was or was not prioritized) and illustrated the importance of factors, such as personal social context and the specific nature of the comorbid conditions. The third and largest group reported priorities that shifted over time. Shifting appeared to be influenced by the participants' perceptions of control and/or interactions with clinical professionals, and could have important consequences for self-management behavior. Conclusion The various factors underlying patients' priorities among their conditions, and the fluctuating nature of these priorities, highlight the importance of regular assessments during clinician–patient consultations to allow better communication and treatment planning, and ultimately optimize patient outcomes.

Purpose: To explore perspectives and experiences of people with multiple sclerosis (MS) and health care professionals of mental health support for MS in the UK.\ud \ud Method: 24 people with MS, 13 practice nurses, 12 general practitioners (GPs) and 9 MS specialist nurses were recruited through community groups and primary care practices across North West England. Semi-structured interviews were conducted, and data analyzed thematically using constant comparative analysis within and across the data sets. The theoretical framework of candidacy was used to interrogate data.\ud \ud Results: Four themes were identified: candidates for care, management choices, defining roles, and permeability and responsiveness.\ud \ud Discussion: Candidacy for care, and symptom management, depended on the framing of symptoms through a social or medical model of depression. Normalizing symptoms could prevent help-seeking by patients. Reported referral behavior varied by professional group, based on perceived remit, competency and training needs. GPs were perceived by patients and other professionals as central for management of mental health needs in MS, but may not perceive this role themselves, suggesting a need for increased knowledge, training, and improved access to specialist care.\ud \ud Implications for Rehabilitation\ud Anxiety and depression are common in people with MS.\ud \ud Management of mental health needs in people with MS relies on complex decisions made by both people with MS and health care professionals.\ud \ud General practitioners may play a key role in the ongoing management of mental health needs of people with MS.

BACKGROUND: Diagnostic errors are costly and they can contribute to adverse patient outcomes, including avoidable deaths. Differential diagnosis (DDX) generators are electronic tools that may facilitate the diagnostic process.METHODS AND FINDINGS: We conducted a systematic review and meta-analysis to investigate the efficacy and utility of DDX generators. We undertook a comprehensive search of the literature including 16 databases from inception to May 2015 and specialist patient safety databases. We also searched the reference lists of included studies. Article screening, selection and data extraction were independently conducted by 2 reviewers. 36 articles met the eligibility criteria and the pooled accurate diagnosis retrieval rate of DDX tools was high with high heterogeneity (pooled rate = 0.70, 95% CI = 0.63 to 0.77; I2 = 97%, pCONCLUSIONS: DDX generators have the potential to improve diagnostic practice among clinicians. However, the high levels of heterogeneity, the variable quality of the reported data and the minimal benefits observed for complex cases suggest caution. Further research needs to be undertaken in routine clinical settings with greater consideration of enablers and barriers which are likely to impact on DDX use before their use in routine clinical practice can be recommended.

Objective: A lack of agreement between health-care providers and patient priorities can impact the health-care provider–patient relationship, treatment concordance and potentially health outcomes. Evidence suggests that people living with multiple morbidities do prioritise among their long-term conditions. However, the evidence revealing the underlying reasons behind this prioritisation remains limited. Given the potential implications for day-to-day self-management activity and ultimately patient outcomes, this study aims to explore how and why people with multimorbidity prioritise some long-term conditions over others and what the potential implications may be for self-management activity, and in turn, suggest how such information may help clinicians negotiate the management of multimorbidity patients. Methods: A secondary analysis of qualitative data was conducted utilising four existing data sets collated from the three research centres involved. Purposive sampling provided a sample of 41 participants who had multimorbidity. The research team collectively coded and analysed the data thematically. Results: All participants, except two, identified one ‘main’ priority long-term condition. Current priorities were arrived at by participants making comparisons between their long-term conditions, specifically by trading off the various attributes, impacts and perceived consequences of their individual long-term conditions. Two main themes emerged as to why participants identified a particular main long-term condition: (a) proximate issues surrounding barriers to functional health and (b) prioritisation of long-term conditions perceived to have a particular future risk. Conclusions: The recent focus on multimorbidity within the medical literature reflects its prevalence. It is therefore important to understand the complexities of the multimorbidity illness experience. We have added to the limited literature on condition prioritisation by revealing some novel understandings of the process of condition prioritisation which can feed into patient–provider consultations in order to allow better communication and treatment planning as well as, ultimately, optimise patient outcomes.

Multiple sclerosis (MS) is a chronic degenerative condition, with heterogeneous symptoms, and an unpredictable prognosis. Previous literature suggests patients' experiences of healthcare are unsatisfactory. Primary care may play a key role in the management of people with MS (PwMS); however, provision of services for PwMS has received little focus in the primary care literature. This study aimed to explore perspectives and experiences of PwMS and healthcare professionals of UK healthcare services for MS. Semi‐structured interviews were conducted with 24 PwMS, 13 Practice Nurses, 12 General Practitioners and 9 MS Specialist Nurses in northern England, between October 2012 and April 2014. Participants were purposively selected. Data were analysed thematically using constant comparative analysis. The theoretical framework of candidacy was used to interrogate data, with themes mapping onto the National Institute for Health and Care Excellence (NICE) guideline for MS. How PwMS interpreted symptoms as leading to candidacy for care dictated help‐seeking. PwMS required additional support in identifying symptoms due to MS. Participants reported poor experiences of care including poor access to services, poor continuity of care and poor interpersonal interactions with perceptions of limited person‐centredness. PwMS and professionals identified that MS‐related disability and progression of symptoms required responsive care. Relational continuity enabled PwMS to feel understood, and professionals to holistically appraise symptoms and progression. In conclusion, continuity and patient‐centredness of care are central to positive healthcare experiences for PwMS and professionals. Services need to be more accessible to ensure responsive and effective MS management. This study provides unique findings on the role of primary care for PwMS, and the relationship between findings and MS NICE guideline recommendations with implications for service delivery in the community.

ObjectivesThe prevalence of multimorbidity is increasing in many Western countries. Persons with multimorbidity often experience a lack of alignment in the care that multiple health and social care organisations provide. As a response, integrated care programmes are appearing. It is a challenge to evaluate these and to choose appropriate outcome measures. Focus groups were held with persons with multimorbidity in eight European countries to better understand what good health and a good care process mean to them and to identify what they find most important in each.MethodsIn 2016, eight focus groups were organised with persons with multimorbidity in: Austria, Croatia, Germany, Hungary, the Netherlands, Norway, Spain and the UK (total n=58). Each focus group followed the same two-part procedure: (1) defining (A) good health and well-being and (B) a good care process, and (2) group discussion on prioritising the most important concepts derived from part one and from a list extracted from the literature. Inductive and deductive analyses were done.ResultsOverall, the participants in all focus groups concentrated more on the care process than on health. Persons with multimorbidity defined good health as being able to conduct and plan normal daily activities, having meaningful social relationships and accepting the current situation. Absence of shame, fear and/or stigma, being able to enjoy life and overall psychological well-being were also important facets of good health. Being approached holistically by care professionals was said to be vital to a good care process. Continuity of care and trusting professionals were also described as important. Across countries, little variation in health definitions were found, but variation in defining a good care process was seen.ConclusionA variety of health outcomes that entail well-being, social and psychological facets and especially experience with care outcomes should be included when evaluating integrated care programmes for persons with multimorbidity.

BackgroundDiagnostic errors have recently been identified as a high-priority patient safety problem in primary care by the World Health Organization (WHO). However, no studies exist in UK to quantify the extent of such errors and associated harm in primary care.AimThis study aimed to determine the incidence of ‘missed diagnostic opportunities’ (MDOs) in UK primary care.MethodRetrospective reviews of electronic health records (EHRs). Twenty-one general practices were recruited, sampled by size and deprivation. Pairs of GP-reviewers independently reviewed 100 randomly selected face-to-face consultations with adults in each practice (n = 21), reviewing a 12-month period for consultations containing new diagnostic activity. Records were jointly reviewed where at least one reviewer identified an MDO to gain consensus.ResultsWe reviewed 2070 EHRs; and, 1530 contained some new diagnostic activity. After joint review, at least one clinician thought an MDO was likely/certain in 4.4% (95% CI = 3.2 to 5.8) of these consultations, and both rated an MDO likely/certain in 2.5% (95% CI = 1.6 to 3.9). Final consensus, identified MDO occurrences for 61.4% of the consultations. The overall agreement was higher than other comparable studies (κ statistic 0.68), and 54% (n = 20) of the mutually agreed MDOs (n = 56), were rated as likely to cause moderate or severe patient harm.ConclusionIn this first assessment of MDOs in UK primary care, we found their frequency to be relatively low but human cost relatively high for over half of those experiencing an error. Identifying workable strategies to prevent errors occurring from the identified contributing factors, and prioritising diagnostic errors is the next critical action.

BACKGROUND: Delivering effective health care within limited budgets requires an understanding of patient priorities. Discrete choice experiments (DCEs) provide patients with choices, where each choice differs in terms of certain attributes (such as waiting times, quality of care). Although this technique has significant potential in examining priorities, its use raises practical and conceptual issues. This paper describes the development of a DCE evaluating patient priorities in primary care. METHODS: Twenty patients completed a DCE using a 'think aloud' protocol, where they verbalized their thinking while making choices. The analysis examined their decision-making processes. RESULTS: There was evidence that patients reinterpreted some attributes, and related some to others outside the task. The cost attribute was interpreted in a variety of ways, dominating some patients' decision-making, being seen as irrelevant by others and being interpreted appropriately by some. The deree to which patients exhibited trading in line with theoretical assumptions also varied. Some choices in the hypothetical task were restricted by their previous experience, but more frequently patients tested the boundaries of the task in ways which directly reflected the primary care context. CONCLUSION: Patient interpretation of the discrete choice task was varied and some went beyond the formal boundaries of the task to make their choices. This highlights the importance of piloting attributes, providing clear instructions about the task and developing models of patient decision-making so that responses can be interpreted correctly.