Engaging the public in healthcare decision-making: results from a Citizens' Jury on emergency care services.

BACKGROUND: Policies addressing ED crowding have failed to incorporate the public's perspectives; engaging the public in such policies is needed. OBJECTIVE: This study aimed at determining the public's recommendations related to alternative models of care intended to reduce crowding, optimising access to and provision of emergency care. METHODS: A Citizens' Jury was convened in Queensland, Australia, to consider priority setting and resource allocation to address ED crowding. Twenty-two jurors were recruited from the electoral roll, who were interested and available to attend the jury from 15 to 17 June 2012. Juror feedback was collected via a survey immediately following the end of the jury. RESULTS: The jury considered that all patients attending the ED should be assessed with a minority of cases diverted for assistance elsewhere. Jurors strongly supported enabling ambulance staff to treat patients in their homes without transporting them to the ED, and allowing non-medical staff to treat some patients without seeing a doctor. Jurors supported (in principle) patient choice over aspects of their treatment (when, where and type of health professional) with some support for patients paying towards treatment but unanimous opposition for patients paying to be prioritised. Most of the jurors were satisfied with their experience of the Citizens' Jury process, but some jurors perceived the time allocated for deliberations as insufficient. CONCLUSIONS: These findings suggest that the general public may be open to flexible models of emergency care. The jury provided clear recommendations for direct public input to guide health policy to tackle ED crowding.

What drives junior doctors to use clinical practice guidelines? A national cross-sectional survey of foundation doctors in England & Wales.

BACKGROUND: Clinical practice guidelines (CPGs) aim to improve patient care, but their use remains variable. We explored attitudes that influence CPG use amongst newly qualified doctors. METHODS: A self-completed, anonymous questionnaire was sent to all Foundation Doctors in England and Wales between December 2012 and May 2013. We included questions designed to measure the 11 domains of the validated Theoretical Domains Framework (TDF). We correlated these responses to questions assessing current and future intention to use CPGs. RESULTS: A total of 13,138 doctors were invited of which 1693 [corrected] (13 %) responded. 1,035 (62.5 %) reported regular CPG use with 575 (34.4 %) applying CPGs 2-3 times per week. A significant minority of 606 (36.6 %) declared an inability to critically appraise evidence. Despite efforts to design a questionnaire that captured the domains of the TDF, the domain scales created had low internal reliability. Using previously published studies and input from an expert statistical group, an alternative model was sought using exploratory factor analysis. Five alternative domains were identified. These were judged to represent: "confidence", "familiarity", "commitment and duty", "time" and "perceived benefits". Using regression analyses, the first three were noted as consistent predictors of both current and future intentions to use CPGs in decreasing strength order. CONCLUSIONS: In this large survey of newly qualified doctors, "confidence", "familiarity" and "commitment and duty" were identified as domains that influence use of CPGs in frontline practice. Additionally, a significant minority were not confident in critically appraising evidence. Our findings suggest a number of approaches that may be taken to improve junior doctors' commitment to CPGs through processes that increase their confidence and familiarity in using CPGs. Despite limitations of a self-reported survey and potential non-response bias, these findings are from a large representative sample and a review of existing implementation strategies may be warranted based on these findings.

The NHS: assessing new technologies, NICE and value for money.

The healthcare system in the UK, essentially the NHS, is an open economic system subject to the same pressures as any other economic system. The pressures concern limited resources coupled with powerful drivers for increasing spending: invention, demography and inflation. There have only ever been three types of economic system: steady state (everything, as in a feudal system, stays as it was the year before), market capitalism (supply and demand are allowed to find their own equilibrium) and some version of central planning. In healthcare, most advanced countries favour the last of the three. This is for three reasons: distribution (not only are the poor less able to pay for sickness, but sickness exacerbates poverty), information (markets operate poorly when providers can easily outsmart customers) and externalities (it is in the interest of everyone that infectious diseases and the other knock-on consequences of ill health are ameliorated). So in the UK, the state, with a good deal of cross-party consensus, directs most of health service supply. This system has become more complex over the decades since the formation of the NHS in 1948. A notable element of the complexity is the regulation of the introduction of new technologies. A key element of the regulatory system has been the National Institute for Health and Clinical Excellence (NICE), and a key aspect of NICE's decisions has been not just value, but also value for money. This has not been without controversy.

Recommendations from Two Citizens' Juries on the Surgical Management of Obesity.

BACKGROUND: It is important that guidelines and criteria used to prioritise access to bariatric surgery are informed by the values of the tax-paying public in combination with the expertise of healthcare professionals. Citizens' juries are increasingly used around the world to engage the public in healthcare decision-making. This study investigated citizens' juries about prioritising patient access to bariatric surgery in two Australian cities. OBJECTIVES: The objective of this study is to examine public priorities for government expenditure on the surgical management of obesity developed through either a one or three-day citizen jury. SUBJECTS/METHODS: A three-day jury was held in Brisbane and a one-day jury in Adelaide. Jurors were selected in Brisbane (n = 18) and in Adelaide (n = 12) according to pre-specified criteria. Expert witnesses from various medical disciplines and consumers were cross-examined by jurors. RESULTS: The verdicts of the juries were similar in that both juries agreed bariatric surgery was an important option in the management of obesity and related comorbidities. Recommendations about who should receive treatment differed slightly across the juries. Both juries rejected the use of age as a rationing tool, but managed their objections in different ways. Participants' experiences of the jury process were positive, but our observations suggested that many variables may influence the nature of the final verdict. CONCLUSIONS: Citizen's juries, even when shorter in duration, can be an effective tool to guide the development of health policy and priorities. However, our study has identified a range of variables that should be considered when designing and running a jury and when interpreting the verdict.

Correction to: Recommendations from Two Citizens' Juries on the Surgical Management of Obesity.

The spelling of the name of author K. Chalkidou was incorrect in the original article. It is correct here.

GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research.

Background While the patient and public involvement (PPI) evidence base has expanded over the past decade, the quality of reporting within papers is often inconsistent, limiting our understanding of how it works, in what context, for whom, and why.Objective To develop international consensus on the key items to report to enhance the quality, transparency, and consistency of the PPI evidence base. To collaboratively involve patients as research partners at all stages in the development of GRIPP2.Methods The EQUATOR method for developing reporting guidelines was used. The original GRIPP (Guidance for Reporting Involvement of Patients and the Public) checklist was revised, based on updated systematic review evidence. A three round Delphi survey was used to develop consensus on items to be included in the guideline. A subsequent face-to-face meeting produced agreement on items not reaching consensus during the Delphi process.Results 143 participants agreed to participate in round one, with an 86% (123/143) response for round two and a 78% (112/143) response for round three. The Delphi survey identified the need for long form (LF) and short form (SF) versions. GRIPP2-LF includes 34 items on aims, definitions, concepts and theory, methods, stages and nature of involvement, context, capture or measurement of impact, outcomes, economic assessment, and reflections and is suitable for studies where the main focus is PPI. GRIPP2-SF includes five items on aims, methods, results, outcomes, and critical perspective and is suitable for studies where PPI is a secondary focus.Conclusions GRIPP2-LF and GRIPP2-SF represent the first international evidence based, consensus informed guidance for reporting patient and public involvement in research. Both versions of GRIPP2 aim to improve the quality, transparency, and consistency of the international PPI evidence base, to ensure PPI practice is based on the best evidence. In order to encourage its wide dissemination this article is freely accessible on The BMJ and Research Involvement and Engagement journal websites.

GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research.

BACKGROUND: While the patient and public involvement (PPI) evidence base has expanded over the past decade, the quality of reporting within papers is often inconsistent, limiting our understanding of how it works, in what context, for whom, and why. OBJECTIVE: To develop international consensus on the key items to report to enhance the quality, transparency, and consistency of the PPI evidence base. To collaboratively involve patients as research partners at all stages in the development of GRIPP2. METHODS: The EQUATOR method for developing reporting guidelines was used. The original GRIPP (Guidance for Reporting Involvement of Patients and the Public) checklist was revised, based on updated systematic review evidence. A three round Delphi survey was used to develop consensus on items to be included in the guideline. A subsequent face-to-face meeting produced agreement on items not reaching consensus during the Delphi process. RESULTS: One hundred forty-three participants agreed to participate in round one, with an 86% (123/143) response for round two and a 78% (112/143) response for round three. The Delphi survey identified the need for long form (LF) and short form (SF) versions. GRIPP2-LF includes 34 items on aims, definitions, concepts and theory, methods, stages and nature of involvement, context, capture or measurement of impact, outcomes, economic assessment, and reflections and is suitable for studies where the main focus is PPI. GRIPP2-SF includes five items on aims, methods, results, outcomes, and critical perspective and is suitable for studies where PPI is a secondary focus. CONCLUSIONS: GRIPP2-LF and GRIPP2-SF represent the first international evidence based, consensus informed guidance for reporting patient and public involvement in research. Both versions of GRIPP2 aim to improve the quality, transparency, and consistency of the international PPI evidence base, to ensure PPI practice is based on the best evidence. In order to encourage its wide dissemination this article is freely accessible on The BMJ and Research Involvement and Engagement journal websites.

Newborn screening for inborn errors of metabolism: a systematic review.

OBJECTIVES. To establish a database of literature and other evidence on neonatal screening programmes and technologies for inborn errors of metabolism. To undertake a systematic review of the data as a basis for evaluation of newborn screening for inborn errors of metabolism. To prepare an objective summary of the evidence on the appropriateness and need for various existing and possible neonatal screening programmes for inborn errors of metabolism in relation to the natural history of these diseases. To identify gaps in existing knowledge and make recommendations for required primary research. To make recommendations for the future development and organisation of neonatal screening for inborn errors of metabolism in the UK. HOW THE RESEARCH WAS CONDUCTED. There were three parts to the research. A systematic review of the literature on inborn errors of metabolism, neonatal screening programmes, new technologies for screening and economic factors. Inclusion and exclusion criteria were applied, and a working database of relevant papers was established. All selected papers were read by two or three experts and were critically appraised using a standard format. Seven criteria for a screening programme, based on the principles formulated by Wilson and Jungner (WHO, 1968), were used to summarise the evidence. These were as follows. Clinically and biochemically well-defined disorder. Known incidence in populations relevant to the UK. Disorder associated with significant morbidity or mortality. Effective treatment available. Period before onset during which intervention improves outcome. Ethical, safe, simple and robust screening test. Cost-effectiveness of screening. A questionnaire which was sent to all newborn screening laboratories in the UK. Site visits to assess new methodologies for newborn screening. The classical definition of an inborn error of metabolism was used (i.e., a monogenic disease resulting in deficient activity in a single enzyme in a pathway of intermediary metabolism). RESEARCH FINDINGS. INBORN ERRORS OF METABOLISM. Phenylketonuria (PKU) (incidence 1:12,000) fulfilled all the screening criteria and could be used as the 'gold standard' against which to review other disorders despite significant variation in methodologies, sample collection and timing of screening and inadequacies in the infrastructure for notification and continued care of identified patients. Of the many disorders of organic acid and fatty acid metabolism, a case can only be made for the introduction of newborn screening for glutaric aciduria type 1 (GA1; estimated incidence 1:40,000) and medium-chain acyl CoA dehydrogenase (MCAD) deficiency (estimated incidence 1:8000-1:15,000). Therapeutic advances for GA1 offer prevention of neurological damage but further investigation is required into the costs and benefits of screening for this disorder. MCAD deficiency is simply and cheaply treatable, preventing possible early death and neurological handicap. Neonatal screening for these diseases is dependent upon the introduction of tandem mass spectrometry (tandem MS). This screening could however also simultaneously detect some other commonly-encountered disorders of organic acid metabolism with a collective incidence of 1:15,000.(ABSTRACT TRUNCATED)

Secondary analysis of economic data: a review of cost-benefit studies of neonatal screening for phenylketonuria.

STUDY OBJECTIVE: To estimate the net financial benefit of neonatal screening for phenylketonuria (PKU): by a simple pooling of cost data from the literature; and by a more complex modelling approach. DESIGN: A systematic literature review was conducted to identify papers containing data on the monetary costs and benefits of neonatal screening for PKU. The methodological quality of the studies was appraised, and data were extracted on resource use and expenditure. Monetary data were converted to common currency units, and standardised to UK incidence rates. Net benefits were calculated for median, best case and worst case scenarios, and the effect of excluding poor quality studies and data was tested. The net benefit was also estimated from a model based on data from the literature and assumptions appropriate for the current UK situation. Extensive sensitivity analysis was conducted. MAIN RESULTS: The direct net benefit of screening based on the median costs and benefits from the 13 studies identified was 143,400 Pounds per case detected and treated (39,000 Pounds and 241,800 Pounds for worst case and best case scenarios respectively). The direct net benefit obtained by the modelling approach was lower at 93,400 Pounds per case detected and treated. Screening remained cost saving under sensitivity analysis, except with low residential care costs (less than 12,300 Pounds per annum), or very low incidence rates (less than 1 in 27,000). CONCLUSIONS: The economic literature on PKU screening is of variable quality. The two methods of secondary analysis lead to the same conclusion: that neonatal PKU screening is worthwhile in financial terms alone in the UK, and that it justifies the infrastructure for collecting and testing neonatal blood samples. This result cannot necessarily be extrapolated to other countries.

The relationship between severe asthma and social class.

Asthma is one of the few diseases which has been reported to be common in the higher social classes. In order to assess the relationship between severe asthma and social class we analysed a national study of disabled adults undertaken by the Office of Population Censuses and Surveys (OPCS). The study estimated that there were 5.8 million people over 16 years with some degree of disability living in private households in England and Wales. Thirteen percent of disabilities were due to respiratory disease: 6% chronic bronchitis and emphysema, 3% asthma and allergy, and 4% other respiratory diseases. Among 10,000 individuals interviewed, 338 disabled adults reported asthma as a contributing cause of their disability. Of 291 cases with social class recorded, 41 (14%) were in social classes 1 and 2, 128 (44%) in social class 3, and 122 (42%) in social classes 4 and 5. An estimate of the relationship between social class and adult asthma in the general population was derived by calculating a morbidity ratio for the different social classes. The morbidity ratio for all social classes combined equals 100: for social classes 1 and 2 it was 63 (95% confidence intervals 48, 91); 93 (95% confidence intervals 77, 109) for social class 3; and 131 (95% confidence intervals 108, 153) for social classes 4 and 5. Adults in social classes 4 and 5 were approximately twice as likely to have severe asthma as those in social classes 1 and 2. This could be as a result of differences in the prevalence or treatment of asthma among the social classes.

An evaluation of the prevalent round of the breast screening programme in south east Thames, 1988-1993: achievement of quality standards and population impact.

OBJECTIVE: To evaluate the impact of the prevalent round of the NHS breast screening programme on the whole population of women aged 50-64 during the period 1988-92, by comparing the numbers of cancers detected at screening with those diagnosed symptomatically, in one United Kingdom health region (population 3.5 million). To relate this impact to the achievement of national quality standards and the observed sensitivity and specificity of the programme. METHOD: The breast screening programme computer systems and the Thames Cancer Registry database were used to diagnose cancers in women aged 50-64 during the period 1988-1992, who were classified into screen detected, interval cases, eligible but not yet invited, non-attenders, and those not registered with the programme. RESULTS: The programme met all national quality assurance targets for uptake, diagnostic process, and detection, but screen detected cases comprised only 48% of those diagnosed during 1991 and 1992 when the breast screening programme was fully operational. As fewer than 40% of breast cancers registered occur in the eligible age range, this limits the impact of the programme to the possible early diagnosis of only 20% of all cases. A surprisingly high proportion occurred in women unknown to the programme, especially in inner London. The high number of interval cancers led to a programme sensitivity of only 73%, but 99.7% of women screening negative were correctly reassured as a result of screening- and for them the breast screening programme is a success. CONCLUSION: Despite achievement of quality standards, the breast screening programme is apparently having a low impact on the overall diagnosis of breast cancer in South East Thames, so a large mortality reduction due to screening alone is unlikely. Population coverage will need to be improved, and it may be necessary to reduce the screening interval, or extend the age range, or both.

The quantity and quality of clinical practice guidelines for the management of depression in primary care in the UK.

BACKGROUND: Despite research evidence that guidelines can improve patient care, concerns remain over their cost-effectiveness. This is particularly so when there is a proliferation of guidelines for the same condition. Faced with differing recommendations, users will wish to make informed decisions on which guideline to follow. In creating a guideline appraisal instrument we have assessed guidelines developed in the United Kingdom (UK) for the management of a range of disorders including depression in primary care. AIM: To identify the number of UK clinical guidelines for the management of depression in primary care and to describe their quality and clinical content. METHOD: A survey was undertaken to identify all depression guidelines developed in the UK between January 1991 and January 1996. All guidelines produced by national organizations and a random sample of local guidelines were appraised using a validated instrument by six assessors: a national expert in the disease area, a general practitioner, a public health physician, a hospital consultant, a nurse specializing in the disease area, and a researcher on guideline methodology. The clinical content of each guideline was then assessed by one of the researchers (RB) according to a defined framework. RESULTS: Forty-five depression guidelines were identified. While there was a considerable range in the quality of the six national and three local guidelines appraised, at a group level their performance was similar to guidelines for other diseases. Clinical recommendations tended to reflect the joint consensus statement produced by the Royal College of General Practitioners and Royal College of Psychiatrists in 1992. The most obvious difference was in the style in which the guidelines were written and presented. CONCLUSION: A 'national template' was the starting place for most guidelines. Steps need to be taken to ensure that these templates are based on the best possible research evidence and professional opinion. Local clinicians should concentrate on effective dissemination and implementation strategies, rather than creating new guidelines.

Knowledge based commissioning: can a national clinical effectiveness policy be compatible with seeking local professional advice?

OBJECTIVES: To help develop a means, based on the views of purchasers and providers of health care, of incorporating national research on clinical effectiveness into local professional advisory mechanisms in order to inform health care purchasing and contracting. METHODS: Three geographically based multidisciplinary workshops attended by National Health Service (NHS) staff drawn from the principal purchaser and provider groups in one English region were organized around the discussion of three health care purchasing case studies: coronary artery disease, diabetes and management of clinical depression in general practice. The proceedings were transcribed and analyzed using content analysis methods. RESULTS: 95 people took part. There were major differences between the purchasers' and health care providers' views on the right balance between local and national information and advisory sources for purchasing. In general, providers wanted the provision of advice to purchasers to be local, in which their opinion was sought, either individually or collectively, acted on and the results fed back to them. In contrast, health authority purchasers considered that local professionals were only one source of professional advice, albeit an important one, to be utilized in coming to decisions. General practitioner fundholders as purchasers, however, preferred to rely on their own experiences and contacts with local providers in making purchasing decisions. CONCLUSIONS: Professional specialist advisory groups are necessary to inform the purchasing of health care, but should extend beyond advising on the placement of individual contracts. Involving health care providers in all short-term contracting is unlikely to be cost-effective given the time commitment required. The emphasis at purchaser/provider meetings should be on education: providing an opportunity for purchasers and providers to develop closer relationships to discuss political imperatives and financial constraints; increasing communication and understanding of providers' and purchasers' roles; and providing an environment for professionals and purchasers to share their views on purchasing. As currently presented, elements of the national policies in the NHS advocating the use of both national evidence on clinical effectiveness and local professional advice are contradictory and should be clarified.

Glyceryl trinitrate as a hypotensive agent in middle-ear surgery.

A total of 47 patients having microsurgery of the middle-ear under general anaesthesia received an infusion of glyceryl trinitrate to produce controlled hypotension. The operating field was evaluated by the surgeon by means of a simple scoring system. Using this technique satisfactory conditions were achieved in all patients without complications.

Prevalence and diagnosis of chronic respiratory symptoms in adults.

OBJECTIVE: To investigate the prevalence and diagnosis of chronic respiratory disease in adults. DESIGN: Screening questionnaire was sent to all patients aged 40-70 on the register of a group general practice; those responding positively were sent a detailed questionnaire and invited for assessment of respiratory function by forced expiratory volume in one second, forced vital capacity, peak flow rate, and reversibility studies with a beta adrenergic inhaler. SETTING: Group general practice in south west London. RESULTS: Of 2387 patients aged 40-70, 1444 completed a screening questionnaire. Of the 509 patients who reported cough, phlegm, wheeze, or shortness of breath, 324 responded to a detailed questionnaire, 256 of whom had simple respiratory function assessed. Chronic bronchitis affected 106 (17%) men and 58 (7%) women, and wheeze occurring at least once a week affected 60 (9%) men and 20 (3%) women. Only a half to a third of patients had received a diagnostic label of chronic bronchitis or asthma for their symptoms. There was considerable clinical and physiological similarity (including reversibility of the airways) between patients labelled as having asthma and having chronic bronchitis. A label of asthma was used more often for patients of social classes I and II. CONCLUSIONS: Comparison with prevalence surveys carried out in the 1950s showed that respiratory symptoms are as common now as then, but the risk of disabling chronic bronchitis has fallen, more among men than women, probably because of their reduced smoking. Changes in diagnostic fashion, together with increased detection, may have contributed to the upward trend in reported morbidity from asthma over the past 30 years.

Cumulative risk adjusted mortality chart for detecting changes in death rate: observational study of heart surgery.

OBJECTIVE: To detect changes in mortality after surgery, with allowance being made for variations in case mix. DESIGN: Observational study of postoperative mortality from January 1992 to August 1995. SETTING: Regional cardiothoracic unit. SUBJECTS: 3983 patients aged 16 and over who had open heart operations. MAIN OUTCOME MEASURES: Preoperative risk factors and postoperative mortality in hospital within 30 days were recorded for all surgical heart operations. Mortality was adjusted for case mix using a preoperative estimate of risk based on additive Parsonnet factors. The number of operations required for statistical power to detect a doubling of mortality was examined, and control limits at a nominal significance level of P=0.01 for detection of an adverse trend were determined. RESULTS: Total mortality of 7.0% was 26% below the Parsonnet predictor (P<0.0001). There was a highly significant variation in annual case mix (Parsonnet scores 8.7-10.6, P<0.0001). There was no significant variation in mortality after adjustment for case mix (odds ratio 1-1.5, P=0.18) with monitoring by calendar year. With continuous monitoring, however, nominal 99% control limits based on 16 expected deaths were crossed on two occasions. CONCLUSIONS: Hospital league tables for mortality from heart surgery will be of limited value because year to year differences in death rate can be large (odds ratio 1.5) even when the underlying risk or case mix does not change. Statistical quality control of a single series with adjustment for case mix is the only way to take into account recent performance when informing a patient of the risk of surgery at a particular hospital. If there is an increase in the number of deaths the chances of the next patient surviving surgery can be calculated from the last 16 deaths.

Relation between a career and family life for English hospital consultants: qualitative, semistructured interview study.

OBJECTIVE: To explore the relation between work and family life among hospital consultants and their attitude towards the choices and constraints that influence this relation. DESIGN: Qualitative study of consultants' experiences and views based on tape recorded semistructured interviews. SETTING: Former South Thames health region in southeast England. PARTICIPANTS: 202 male and female NHS hospital consultants aged between 40 to 50 years representing all hospital medical specialties. RESULTS: Three types of relation between work and family life (career dominant, segregated, and accommodating) were identified among hospital consultants. Most consultants had a segregated relation, although female consultants were more likely than male consultants to have a career dominant or an accommodating relation. Many male consultants and some female consultants expressed considerable dissatisfaction with the balance between their career and family life. A factor influencing this dissatisfaction was the perceived lack of choice to spend time on their personal or family life, because of the working practices and attitudes within hospital culture, if they wanted a successful career. CONCLUSIONS: Consultants are currently fitting in with the profession rather than the profession adapting to enable doctors to have fulfilling professional and personal lives. Current government policies to increase the medical workforce and promote family friendly policies in the NHS ought to take account of the need for a fundamental change in hospital culture to enable doctors to be more involved in their personal or family life without detriment to their career progress.

Links between clinical audit and contracting systems.

In 1989, a programme of clinical audit was introduced throughout the UK National Health Service (NHS), in an attempt to improve care through the application of quality methodology to clinical issues. However, the role of clinical audit in the new NHS "internal market" is unclear. Reviews evidence on the development of audit and concludes that it has operated largely in isolation, under professional control. Central policy is now advocating greater purchaser and provider management involvement in audit, enabling feedback from and to service provision and management decisions. Where there are constructive local relationships the opening up of audit should be beneficial, but these do not always exist. Discusses a range of models for the interaction of clinical audit with wider NHS management systems. Recommends a split system of professionally controlled background audit and collaborative shared audits to balance conflicting goals.