Applied public health research - falling through the cracks?

<p>Abstract</p> <p>Background</p> <p>There is a degree of dissonance between the types of evaluative research required by organisations providing or commissioning health care, those recommended by organisations developing evidence-based guidance, and those which research funding bodies are prepared to support.</p> <p>Methods</p> <p>We present a case study of efforts to establish a pragmatic but robust evaluation of local exercise referral schemes. We considered the epidemiological, ethical and practical advantages and disadvantages of a number of study designs and applied for research funding based on an uncontrolled design, outlining the difficulties of carrying out a randomised controlled trial to evaluate an existing service.</p> <p>Results</p> <p>Our proposal was praised for its relevance and clear patient outcomes, but the application was twice rejected because both funders and reviewers insisted on a randomised controlled trial design, which we had found to be impractical, unacceptable to service users and potentially unethical.</p> <p>Conclusion</p> <p>The case study highlights continuing challenges for applied public health research in the current funding climate.</p

Caring after Francis: moral failure in nursing reconsidered

This discussion paper considers recent nursing failures. Drawing on a selection of key literature and on-going research, it argues that nursing failures are a possibly inevitable consequence of work in healthcare systems with their combination of cognitive, bureaucratic, professional and work related pressures. It also argues that nursing has a residual tendency to be viewed as primarily character-based moral work and that this can encourage understandings of causes of failures and their solutions in similar terms i.e. as moral failures of caring requiring recruitment of those with the appropriate characters. Drawing on on-going research with those training for the profession at an English university, it suggests that while the profession focuses on the recruitment of those with a ‘caring’ orientation it has not developed an adequate explanation to support new recruits in understanding the causes of inadequate practice. This leaves those entering the profession without a strong model with which to understand their own work or its failures what I refer to as ‘critical resilience’

Professional identity in nursing: UK students' explanations for poor standards of care

Research concludes that professional socialisation in nursing is deeply problematic because new recruits start out identifying with the profession’s ideals but lose this idealism as they enter and continue to work in the profession. This study set out to examine the topic focussing on the development of professional identity. Six focus groups were held with a total of 49 2nd and 3rd year BSc nursing students studying at a university in London, UK and their transcripts were subject to discourse analysis. Participants’ talk was strongly dualistic and inflected with anxiety. Participants identified with caring as an innate characteristic. They described some qualified nurses as either not possessing this characteristic or as having lost it. They explained strategies for not becoming corrupted in professional practice. Their talk enacted distancing from ‘bad’ qualified nurses and solidarity with other students. Their talk also featured cynicism. Neophyte nurses’ talk of idealism and cynicism can be understood as identity work in the context of anxiety inherent in the work of nurses and in a relatively powerless position in the professional healthcare hierarchy

Cross-national mixed methods comparative case study of recovery-focused mental health care planning and coordination in acute inpatient mental health settings (COCAPP-A)

Background: Serious concerns have been identified in relation to care planning, patient involvement and consent to treatment in mental health wards, including for those patients detained under the Mental Health Act. Further evidence is needed to develop care planning interventions that embed dignity, recovery and participation for all people using inpatient mental health care. Design: We propose to undertake a cross-national comparative study of recovery-focused mental health care planning in inpatient settings. This two-phase exploratory mixed methods study will produce theory and empirical evidence to complement that developed in our current study of community mental health services to inform a future whole systems intervention study. The study is guided by a theoretical framework emphasising the connections between different 'levels' of organisation (macro/meso/micro). In phase 1 we study the macro-level through the comparative analysis of English and Welsh policy contexts. In phase 2 concurrent quantitative and qualitative data will be collected at 6 NHS Trust/Health Board case study sites (meso-level) and within each site, a single micro-level mental health ward will be selected to provide in-depth qualitative data related to care planning processes. Phase 1: We will extend our current meta-narrative mapping review (Wong et al 2013) of English and Welsh policies and the international literature on personalised recovery-oriented care planning and coordination in community settings to include inpatient settings. We will provide a review of evidence that is useful, rigorous and relevant for service providers and decision-makers and to inform Phase 2. Phase 2: We are employing a concurrent transformative mixed methods approach with embedded case studies (Creswell 2009: 215). We will conduct six in-depth meso-level case study investigations across contrasting NHS Trusts in England (n=4) and Local Health Boards in Wales (n=2), selected to reflect variety in geography and population and include a mix of rural, urban and inner city settings providing routine inpatient care. A large sample of service users (total n=300), inpatient staff (n=300) and informal carers (n=150) will be surveyed about perceptions of acute mental health care and care planning, recovery oriented practices, therapeutic relationships and empowerment using validated questionnaires. Documents and interviews with managers, consultant psychiatrists, ward staff and informal carers (n=60) will also be generated relating to local contexts, policies and practices. In each site we will also select a single inpatient ward and conduct a series of case studies embedded within each organisational case study, to explore care planning in detail. We will invite a sample of service users (total n=36) to participate in in-depth interviews about care planning and structured narrative reviews of their care plans; undertake a structured review of anonymised care plans for a further sample (n=60) of consecutively discharged patients; and conduct observation of care planning processes (n= 18). Framework method will be employed to integrate and compare textual and statistical summaries of qualitative and quantitative analyses within each case study site, informed by the theoretical framework focused on recovery and personalisation. Armed with our set of six within-case analyses we will then conduct a cross-case analysis to draw out key findings from across all sites

Power, empowerment, and person-centred care: using ethnography to examine the everyday practice of unregistered dementia care staff

The social positioning and treatment of persons with dementia reflects dominant biomedical discourses of progressive and inevitable loss of insight, capacity, and personality. Proponents of person-centred care, by contrast, suggest that such loss can be mitigated within environments that preserve rather than undermine personhood. In formal organisational settings, person-centred approaches place particular responsibility on ‘empowered’ direct-care staff to translate these principles into practice. These staff provide the majority of hands-on care, but with limited training, recognition, or remuneration. Working within a Foucauldian understanding of power, this paper examines the complex ways that dementia care staff engage with their own ‘dis/empowerment’ in everyday practice. The findings, which are drawn from ethnographic studies of three National Health Service (NHS) wards and one private care home in England, are presented as a narrative exploration of carers’ general experience of powerlessness, their inversion of this marginalised subject positioning, and the related possibilities for action. The paper concludes with a discussion of how Foucault’s understanding of power may help define and enhance efforts to empower direct-care staff to provide person-centred care in formal dementia care settings

Evidence for models of diagnostic service provision in the community: literature mapping exercise and focused rapid reviews

Background Current NHS policy favours the expansion of diagnostic testing services in community and primary care settings. Objectives Our objectives were to identify current models of community diagnostic services in the UK and internationally and to assess the evidence for quality, safety and clinical effectiveness of such services. We were also interested in whether or not there is any evidence to support a broader range of diagnostic tests being provided in the community. Review methods We performed an initial broad literature mapping exercise to assess the quantity and nature of the published research evidence. The results were used to inform selection of three areas for investigation in more detail. We chose to perform focused reviews on logistics of diagnostic modalities in primary care (because the relevant issues differ widely between different types of test); diagnostic ultrasound (a key diagnostic technology affected by developments in equipment); and a diagnostic pathway (assessment of breathlessness) typically delivered wholly or partly in primary care/community settings. Databases and other sources searched, and search dates, were decided individually for each review. Quantitative and qualitative systematic reviews and primary studies of any design were eligible for inclusion. Results We identified seven main models of service that are delivered in primary care/community settings and in most cases with the possible involvement of community/primary care staff. Not all of these models are relevant to all types of diagnostic test. Overall, the evidence base for community- and primary care-based diagnostic services was limited, with very few controlled studies comparing different models of service. We found evidence from different settings that these services can reduce referrals to secondary care and allow more patients to be managed in primary care, but the quality of the research was generally poor. Evidence on the quality (including diagnostic accuracy and appropriateness of test ordering) and safety of such services was mixed. Conclusions In the absence of clear evidence of superior clinical effectiveness and cost-effectiveness, the expansion of community-based services appears to be driven by other factors. These include policies to encourage moving services out of hospitals; the promise of reduced waiting times for diagnosis; the availability of a wider range of suitable tests and/or cheaper, more user-friendly equipment; and the ability of commercial providers to bid for NHS contracts. However, service development also faces a number of barriers, including issues related to staffing, training, governance and quality control. Limitations We have not attempted to cover all types of diagnostic technology in equal depth. Time and staff resources constrained our ability to carry out review processes in duplicate. Research in this field is limited by the difficulty of obtaining, from publicly available sources, up-to-date information about what models of service are commissioned, where and from which providers. Future work There is a need for research to compare the outcomes of different service models using robust study designs. Comparisons of ‘true’ community-based services with secondary care-based open-access services and rapid access clinics would be particularly valuable. There are specific needs for economic evaluations and for studies that incorporate effects on the wider health system. There appears to be no easy way of identifying what services are being commissioned from whom and keeping up with local evaluations of new services, suggesting a need to improve the availability of information in this area. Funding The National Institute for Health Research Health Services and Delivery Research programme

CHOICE: Choosing Health Options In Chronic Care Emergencies

Background Over 70% of the health-care budget in England is spent on the care of people with long-term conditions (LTCs), and a major cost component is unscheduled health care. Psychological morbidity is high in people with LTCs and is associated with a range of adverse outcomes, including increased mortality, poorer physical health outcomes, increased health costs and service utilisation. Objectives The aim of this programme of research was to examine the relationship between psychological morbidity and use of unscheduled care in people with LTCs, and to develop a psychosocial intervention that would have the potential to reduce unscheduled care use. We focused largely on emergency hospital admissions (EHAs) and attendances at emergency departments (EDs). Design A three-phase mixed-methods study. Research methods included systematic reviews; a longitudinal prospective cohort study in primary care to identify people with LTCs at risk of EHA or ED admission; a replication study in primary care using routinely collected data; an exploratory and feasibility cluster randomised controlled trial in primary care; and qualitative studies to identify personal reasons for the use of unscheduled care and factors in routine consultations in primary care that may influence health-care use. People with lived experience of LTCs worked closely with the research team. Setting Primary care. Manchester and London. Participants People aged ≥ 18 years with at least one of four common LTCs: asthma, coronary heart disease, chronic obstructive pulmonary disease (COPD) and diabetes. Participants also included health-care staff. Results Evidence synthesis suggested that depression, but not anxiety, is a predictor of use of unscheduled care in patients with LTCs, and low-intensity complex interventions reduce unscheduled care use in people with asthma and COPD. The results of the prospective study were that depression, not having a partner and life stressors, in addition to prior use of unscheduled care, severity of illness and multimorbidity, were independent predictors of EHA and ED admission. Approximately half of the cost of health care for people with LTCs was accounted for by use of unscheduled care. The results of the replication study, carried out in London, broadly supported our findings for risk of ED attendances, but not EHAs. This was most likely due to low rates of detection of depression in general practitioner (GP) data sets. Qualitative work showed that patients were reluctant to use unscheduled care, deciding to do so when they perceived a serious and urgent need for care, and following previous experience that unscheduled care had successfully and unquestioningly met similar needs in the past. In general, emergency and primary care doctors did not regard unscheduled care as problematic. We found there are missed opportunities to identify and discuss psychosocial issues during routine consultations in primary care due to the ‘overmechanisation’ of routine health-care reviews. The feasibility trial examined two levels of an intervention for people with COPD: we tried to improve the way in which practices manage patients with COPD and developed a targeted psychosocial treatment for patients at risk of using unscheduled care. The former had low acceptability, whereas the latter had high acceptability. Exploratory health economic analyses suggested that the practice-level intervention would be unlikely to be cost-effective, limiting the value of detailed health economic modelling. Limitations The findings of this programme may not apply to all people with LTCs. It was conducted in an area of high social deprivation, which may limit the generalisability to more affluent areas. The response rate to the prospective longitudinal study was low. The feasibility trial focused solely on people with COPD. Conclusions Prior use of unscheduled care is the most powerful predictor of unscheduled care use in people with LTCs. However, psychosocial factors, particularly depression, are important additional predictors of use of unscheduled care in patients with LTCs, independent of severity and multimorbidity. Patients and health-care practitioners are unaware that psychosocial factors influence health-care use, and such factors are rarely acknowledged or addressed in consultations or discussions about use of unscheduled care. A targeted patient intervention for people with LTCs and comorbid depression has shown high levels of acceptability when delivered in a primary care context. An intervention at the level of the GP practice showed little evidence of acceptability or cost-effectiveness. Future work The potential benefits of case-finding for depression in patients with LTCs in primary care need to be evaluated, in addition to further evaluation of the targeted patient intervention

Clinical effectiveness and cost-effectiveness of issuing longer versus shorter duration (3-month vs. 28-day) prescriptions in patients with chronic conditions: systematic review and economic modelling.

BACKGROUND: To reduce expenditure on, and wastage of, drugs, some commissioners have encouraged general practitioners to issue shorter prescriptions, typically 28 days in length; however, the evidence base for this recommendation is uncertain. OBJECTIVE: To evaluate the evidence of the clinical effectiveness and cost-effectiveness of shorter versus longer prescriptions for people with stable chronic conditions treated in primary care. DESIGN/DATA SOURCES: The design of the study comprised three elements. First, a systematic review comparing 28-day prescriptions with longer prescriptions in patients with chronic conditions treated in primary care, evaluating any relevant clinical outcomes, adherence to treatment, costs and cost-effectiveness. Databases searched included MEDLINE (PubMed), EMBASE, Cumulative Index to Nursing and Allied Health Literature, Web of Science and Cochrane Central Register of Controlled Trials. Searches were from database inception to October 2015 (updated search to June 2016 in PubMed). Second, a cost analysis of medication wastage associated with < 60-day and ≥ 60-day prescriptions for five patient cohorts over an 11-year period from the Clinical Practice Research Datalink. Third, a decision model adapting three existing models to predict costs and effects of differing adherence levels associated with 28-day versus 3-month prescriptions in three clinical scenarios. REVIEW METHODS: In the systematic review, from 15,257 unique citations, 54 full-text papers were reviewed and 16 studies were included, five of which were abstracts and one of which was an extended conference abstract. None was a randomised controlled trial: 11 were retrospective cohort studies, three were cross-sectional surveys and two were cost studies. No information on health outcomes was available. RESULTS: An exploratory meta-analysis based on six retrospective cohort studies suggested that lower adherence was associated with 28-day prescriptions (standardised mean difference -0.45, 95% confidence interval -0.65 to -0.26). The cost analysis showed that a statistically significant increase in medication waste was associated with longer prescription lengths. However, when accounting for dispensing fees and prescriber time, longer prescriptions were found to be cost saving compared with shorter prescriptions. Prescriber time was the largest component of the calculated cost savings to the NHS. The decision modelling suggested that, in all three clinical scenarios, longer prescription lengths were associated with lower costs and higher quality-adjusted life-years. LIMITATIONS: The available evidence was found to be at a moderate to serious risk of bias. All of the studies were conducted in the USA, which was a cause for concern in terms of generalisability to the UK. No evidence of the direct impact of prescription length on health outcomes was found. The cost study could investigate prescriptions issued only; it could not assess patient adherence to those prescriptions. Additionally, the cost study was based on products issued only and did not account for underlying patient diagnoses. A lack of good-quality evidence affected our decision modelling strategy. CONCLUSIONS: Although the quality of the evidence was poor, this study found that longer prescriptions may be less costly overall, and may be associated with better adherence than 28-day prescriptions in patients with chronic conditions being treated in primary care. FUTURE WORK: There is a need to more reliably evaluate the impact of differing prescription lengths on adherence, on patient health outcomes and on total costs to the NHS. The priority should be to identify patients with particular conditions or characteristics who should receive shorter or longer prescriptions. To determine the need for any further research, an expected value of perfect information analysis should be performed. STUDY REGISTRATION: This study is registered as PROSPERO CRD42015027042. FUNDING: The National Institute for Health Research Health Technology Assessment programme

The cost-effectiveness of domiciliary non-invasive ventilation in patients with end-stage chronic obstructive pulmonary disease:a systematic review and economic evaluation

Background: Chronic obstructive pulmonary disease (COPD) is a chronic progressive lung disease characterised by non-reversible airflow obstruction. Exacerbations are a key cause of morbidity and mortality and place a considerable burden on health-care systems. While there is evidence that patients benefit from non-invasive ventilation (NIV) in hospital during an acute exacerbation, evidence supporting home use for more stable COPD patients is limited. In the UK, domiciliary NIV is considered on health economic grounds in patients after three hospital admissions for acute hypercapnic respiratory failure. Objective: To assess the clinical effectiveness and cost-effectiveness of domiciliary NIV by systematic review and economic evaluation. Data sources: Bibliographic databases, conference proceedings and ongoing trial registries up to September 2014. Methods: Standard systematic review methods were used for identifying relevant clinical effectiveness and cost-effectiveness studies assessing NIV compared with usual care or comparing different types of NIV. Risk of bias was assessed using Cochrane guidelines and relevant economic checklists. Results for primary effectiveness outcomes (mortality, hospitalisations, exacerbations and quality of life) were presented, where possible, in forest plots. A speculative Markov decision model was developed to compare the cost-effectiveness of domiciliary NIV with usual care from a UK perspective for post-hospital and more stable populations separately. Results: Thirty-one controlled effectiveness studies were identified, which report a variety of outcomes. For stable patients, a modest volume of evidence found no benefit from domiciliary NIV for survival and some non-significant beneficial trends for hospitalisations and quality of life. For post-hospital patients, no benefit from NIV could be shown in terms of survival (from randomised controlled trials) and findings for hospital admissions were inconsistent and based on limited evidence. No conclusions could be drawn regarding potential benefit from different types of NIV. No cost-effectiveness studies of domiciliary NIV were identified. Economic modelling suggested that NIV may be cost-effective in a stable population at a threshold of £30,000 per quality-adjusted life-year (QALY) gained (incremental cost-effectiveness ratio £28,162), but this is associated with uncertainty. In the case of the post-hospital population, results for three separate base cases ranged from usual care dominating to NIV being cost-effective, with an incremental cost-effectiveness ratio of less than £10,000 per QALY gained. All estimates were sensitive to effectiveness estimates, length of benefit from NIV (currently unknown) and some costs. Modelling suggested that reductions in the rate of hospital admissions per patient per year of 24% and 15% in the stable and post-hospital populations, respectively, are required for NIV to be cost-effective. Limitations: Evidence on key clinical outcomes remains limited, particularly quality-of-life and long-term (> 2 years) effects. Economic modelling should be viewed as speculative because of uncertainty around effect estimates, baseline risks, length of benefit of NIV and limited quality-of-life/utility data. Conclusions: The cost-effectiveness of domiciliary NIV remains uncertain and the findings in this report are sensitive to emergent data. Further evidence is required to identify patients most likely to benefit from domiciliary NIV and to establish optimum time points for starting NIV and equipment settings. Future work recommendations: The results from this report will need to be re-examined in the light of any new trial results, particularly in terms of reducing the uncertainty in the economic model. Any new randomised controlled trials should consider including a sham non-invasive ventilation arm and/or a higher- and lower-pressure arm. Individual participant data analyses may help to determine whether or not there are any patient characteristics or equipment settings that are predictive of a benefit of NIV and to establish optimum time points for starting (and potentially discounting) NIV. Study registration: This study is registered as PROSPERO CRD42012003286. Funding: The National Institute for Health Research Health Technology Assessment programme