Co-designing an Adaption of a Mobile App to Enhance Communication, Safety, and Well-being Among People Living at Home With Early-Stage Dementia: Protocol for an Exploratory Multiple Case Study

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 </jats:sec

Never events in UK general practice: a survey of the views of general practitioners on their frequency and acceptability as a safety improvement approach

Background: Never events (NEs) are serious preventable patient safety incidents and are a component of formal quality and safety improvement (Q&amp;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&amp;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. 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. 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). Conclusions: The NE approach may have Q&amp;SI potential for general practice, but further work to adapt the concept and content is required

Black and minority ethnic group involvement in health and social care research: a systematic review

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 characterize 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, utilizing both MeSH and free-text terms to identify international empirical literature published between 1990 and 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 subgroups. There is a need to understand factors that influence BME involvement in all parts of the research cycle

Comparative 4-year risk and type of hospital admission among homeless and housed emergency department attendees: longitudinal study of hospital records in England 2013-2018.

From Europe PMC via Jisc Publications RouterHistory: ppub 2021-07-01, epub 2021-07-26Publication status: PublishedObjectivesPeople 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

Contractual change and UK general practitioners : still a case of street-level bureaucrats?

General practice emerged as a distinct medical discipline in the nineteenth century. As independent contractors, General Practitioners (GPs) have however largely been 'untouched' by centrally derived policy. As a result, the profession has possessed wide discretion in relation to the way they dealt with their patients. However, due to increasing concerns over the cost and quality of care within the NHS, general practice increasingly became a focal point for the attentions of central policy makers who sought to control aspects of frontline practitioner behaviour. In order to do attempt to align the frontline behaviour of GPs with such policy aims, policy makers turned to their main tool, the contract. In this thesis I am concerned with the most recent contractual changes (and its later variants) introduced in 2004. In particular, the study is concerned with the impact of the large element of Pay-for-performance (P4P) known as the Quality and Outcomes Framework (QOF) contained within the new contract. QOF rewards practices on the basis of meeting a number of targets in relation to clinical, organizational, and patient experience indicators. As a result of the scale and prescriptive nature of the targets, QOF had the potential to change the nature of GP work at the micro-level should GPs choose to follow this voluntary policy. Previous evidence in relation to GP responses to other prescriptive policies such as National Service Frameworks (NSFs) and clinical guidelines suggests that GPs responded as workers, specifically as street-level bureaucrats (SLBs) by selectively by choosing aspects of policies based upon the on the criteria of whether or not they made the practicalities of processing their daily workload easier. However, the evidence suggests that there were also instances of GP principal (those that (part-) own their practices) behaviour that did not conform to expected SLB behaviour but instead resembled behaviour that would be expected of those managers who are 'results oriented.' Based upon this evidence and the analytical possibilities the SLB framework provided, the theoretical view of GPs as frontline public sector workers or street-level bureaucrats (SLBs) was employed to understand the continuing perceived impact and responses of GPs to the new contract and in particular QOF. Unlike previous analyses of GPs as SLBs however, this study distinguished between GP principals and salaried GPs employed by the GP principal counterparts. Ultimately, the aim of the thesis was to address the question of whether or not the conceptualization and responses of GPs as SLBs was still relevant and useful post-contractual change. Data was collected (between Feb 2008 and Sept 2009) via semi-structured interviews. In total 62 first round interviews and 24 second round interviews were conducted and analysed thematically. The findings indicate that the financial incentives within the QOF appear to strongly influence the responses of GP principals and reflect their priorities as owners of, rather than workers in their organisations. In addition, it appears that the Evidence Based Practice (EBP) movement means that salaried GPs priorities are also aligned to those of their organisations as they believe most of the QOF to be evidence-based. As a result, the application of Lipsky's SLB framework to explaining GP behaviour in relation to QOF is less useful than previous applications.EThOS - Electronic Theses Online ServiceGBUnited Kingdo

Managing diagnostic uncertainty in primary care: A systematic critical review

Abstract 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: CRD4201502755

A Constellation of Misfortune. Narrative Accounts of Adverse Life Events, Chronic Illness, and Subjective Social Status

Quantitative studies have drawn attention to the patterning of health inequalities in relation to subjective social status (SSS). There is currently little insight into the complexities of the social and biographical aspects that lie behind these findings. Narrative accounts were gathered in a mixed-methods study involving a population of people with coronary heart disease (CHD) and/or diabetes in a region of the United Kingdom with above average levels of socio-economic deprivation. The aim of this secondary qualitative analysis was to examine the accounts of interviewees with low socio-economic status (SES) who ranked themselves either low or high in terms of SSS. The results highlight the multiplicity of adverse circumstances leading to subjective assessments of low SSS. Loss of employment status contributed more to a feeling of being “at the bottom of the ladder” than the symptoms of chronic illness did, perhaps because having somewhere to go is central to the accrual of social, economic, and cultural capital. The narratives of those who ranked themselves highly (in spite of low SES) appeared to have more family and community connections. The findings contribute to theories of socio-economic biographies or trajectories, subjective social status, and engagement with the self-management aspects of chronic illness

The role of patient experience surveys in quality assurance and improvement: a focus group study in English general practice.

BACKGROUND: Despite widespread adoption of patient feedback surveys in international health-care systems, including the English NHS, evidence of a demonstrable impact of surveys on service improvement is sparse. OBJECTIVE: To explore the views of primary care practice staff regarding the utility of patient experience surveys. DESIGN: Qualitative focus groups. SETTING AND PARTICIPANTS: Staff from 14 English general practices. RESULTS: Whilst participants engaged with feedback from patient experience surveys, they routinely questioned its validity and reliability. Participants identified surveys as having a number of useful functions: for patients, as a potentially therapeutic way of getting their voice heard; for practice staff, as a way of identifying areas of improvement; and for GPs, as a source of evidence for professional development and appraisal. Areas of potential change stimulated by survey feedback included redesigning front-line services, managing patient expectations and managing the performance of GPs. Despite this, practice staff struggled to identify and action changes based on survey feedback alone. DISCUSSION: Whilst surveys may be used to endorse existing high-quality service delivery, their use in informing changes in service delivery is more challenging for practice staff. Drawing on the Utility Index framework, we identified concerns relating to reliability and validity, cost and feasibility acceptability and educational impact, which combine to limit the utility of patient survey feedback. CONCLUSIONS: Feedback from patient experience surveys has great potential. However, without a specific and renewed focus on how to translate feedback into action, this potential will remain incompletely realized.This work was funded by the National Institute for Health Research Programme Grants for Applied Research (NIHR PGfAR) Programme (RP-PG-0608-10050).This is the final version of the article. It was first available from Wiley via http://dx.doi.org/10.1111/hex.1229

GPAQ-R: development and psychometric properties of a version of the general practice assessment questionnaire for use for revalidation by general practitioners in the UK.

BACKGROUND: The General Practice Assessment Questionnaire (GPAQ) has been widely used to assess patient experience in general practice in the UK since 2004. In 2013, new regulations were introduced by the General Medical Council (GMC) requiring UK doctors to undertake periodic revalidation, which includes assessment of patient experience for individual doctors. We describe the development of a new version of GPAQ - GPAQ-R which addresses the GMC's requirements for revalidation as well as additional NHS requirements for surveys that GPs may need to carry out in their own practices. METHODS: Questionnaires were given out by doctors or practice staff after routine consultations in line with the guidance given by the General Medical Council for surveys to be used for revalidation. Data analysis and practice reports were provided independently. RESULTS: Data were analysed for questionnaires from 7258 patients relating to 164 GPs in 29 general practices. Levels of missing data were generally low (typically 4.5-6%). The number of returned questionnaires required to achieve reliability of 0.7 were around 35 for individual doctor communication items and 29 for a composite score based on doctor communication items. This suggests that the responses to GPAQ-R had similar reliability to the GMC's own questionnaire and we recommend 30 completed GPAQ-R questionnaires are sufficient for revalidation purposes. However, where an initial screen raises concern, the survey might be repeated with 50 completed questionnaires in order to increase reliability. CONCLUSIONS: GPAQ-R is a development of a well-established patient experience questionnaire used in general practice in the UK since 2004. This new version can be recommended for use in order to meet the UK General Medical Council's requirements for surveys to be used in revalidation of doctors. It also meets the needs of GPs to ask about patient experience relating to aspects of practice care that are not specific to individual general practitioners (e.g. receptionists, telephone access) which meet other survey requirements of the National Health Service in England. Use of GPAQ-R has the potential to reduce the number of surveys that GPs need to carry out in their practices to meet the various regulatory requirements which they face