How reforms hamper priority-setting in health care: an interview study with local decision-makers in London.

The fair allocation of scarce resources for health remains a salient topic in health care systems. Approaches for setting priorities in an equitable manner include technical ones based on health economic analyses, and ethical ones based on procedural justice. Knowledge on real-world factors that influence prioritisation at a local level, however, remains sparse. This article contributes to the empirical literature on priority-setting at the meso level by exploring how health care planners make decisions on which services to fund and to prioritise, and to what extent they consider principles of fair priority-setting. It presents the findings of an interview study with commissioners and stakeholders in South London between 2017 and 2018. Interviewees considered principles of fair prioritisation such as transparency and accountability important for offering guidance. However, the data show that in practice the adherence to principles is hampered by the difficulty of conceptualising and operationalising principles on the one hand, and the political realities in relation to reform processes on the other. To address this challenge, we apply insights from the policy and political sciences and propose a set of considerations by which current frameworks of priority-setting might be adapted to better incorporate issues of context and politics.

Impact of information and deliberation on the consistency of preferences for prioritization in health care - evidence from discrete choice experiments undertaken alongside citizens' juries.

BACKGROUND: Public preferences are an important consideration for priority-setting. Critics suggest preferences of the public who are potentially naïve to the issue under consideration may lead to sub-optimal decisions. We assessed the impact of information and deliberation via a Citizens' Jury (CJ) or preference elicitation methods (Discrete Choice Experiment, DCE) on preferences for prioritizing access to bariatric surgery. METHODS: Preferences for seven prioritization criteria (e.g. obesity level, obesity-related comorbidities) were elicited from three groups who completed a DCE: (i) participants from two CJs (n = 28); (ii) controls who did not participate in the jury (n = 21); (iii) population sample (n = 1,994). Participants in the jury and control groups completed the DCE pre- and post-jury. DCE data were analyzed using multinomial logit models to derive "priority weights" for criteria for access to surgery. The rank order of criteria was compared across groups, time points and CJ recommendations. RESULTS: The extent to which the criteria were considered important were broadly consistent across groups and were similar to jury recommendations but with variation in the rank order. Preferences of jurors but not controls were more differentiated (that is, criteria were assigned a greater range of priority weights) after than before the jury. Juror preferences pre-jury were similar to that of the public but appeared to change during the course of the jury with greater priority given to a person with comorbidity. Conversely, controls appeared to give a lower priority to those with comorbidity and higher priority to treating very severe obesity after than before the jury. CONCLUSION: Being informed and undertaking deliberation had little impact on the criteria that were considered to be relevant for prioritizing access to bariatric surgery but may have a small impact on the relative importance of criteria. CJs may clarify underlying rationale but may not provide substantially different prioritization recommendations compared to a DCE.

Public preferences are an important consideration for priority-setting. However, some people worry that if the public doesn't know much about the issues, their opinions might not lead to the best decisions. To make these decisions, we used two different methods to get people's opinions: Deliberative methods and preference elicitation methods. Deliberative methods gather a small group of people and have them discuss an issue in detail, whereas preference elicitation methods seek opinions through surveying a large group of people.In this paper, we assessed the impact of information and deliberation via a deliberative method (Citizens' Jury, CJ) or a preference elicitation method (Discrete Choice Experiment, DCE) on preferences for prioritising access to bariatric surgery. We used data from two CJs and a DCE focussed on prioritising access to the surgery, to find out if the opinions of those in the CJs changed or stayed the same after they heard information from experts and discussed the topic.The results showed that the important criteria were rather similar across the groups, but the order of importance was a bit different. The people in CJs had more varied opinions after discussing it, while those who didn't discuss it had less varied opinions. The participants in CJs also prioritized those with other health problems more than they did at the beginning.This study helps us understand how different methods can be used to get the public's opinions on healthcare decisions.

What interventions should we implement in England's mental health services? The mental health implementation network (MHIN) mixed-methods approach to rapid prioritisation.

Introduction: Setting mental health priorities helps researchers, policy makers, and service funders improve mental health services. In the context of a national mental health implementation programme in England, this study aims to identify implementable evidence-based interventions in key priority areas to improve mental health service delivery. Methods: A mixed-methods research design was used for a three step prioritisation approach involving systematic scoping reviews (additional manuscript under development), expert consultations and data triangulation. Groups with diverse expertise, including experts by experience, worked together to improve decision-making quality by promoting more inclusive and comprehensive discussions. A multi-criteria decision analysis (MCDA) model was used to combine participants' varied opinions, data and judgments about the data's relevance to the issues at hand during a decision conferencing workshop where the priorities were finalised. Results: The study identified mental health interventions in three mental health priority areas: mental health inequalities, child and adolescent mental health, comorbidities with a focus on integration of mental and physical health services and mental health and substance misuse problems. Key interventions in all the priority areas are outlined. The programme is putting some of these evidence-based interventions into action nationwide in each of these three priority mental health priority areas. Conclusion: We report an inclusive attempt to ensure that the list of mental health service priorities agrees with perceived needs on the ground and focuses on evidence-based interventions. Other fields of healthcare may also benefit from this methodological approach if they need to make rapid health-prioritisation decisions.

The complexities of integrating evidence-based preventative health into England's NHS: lessons learnt from the case of PrEP.

BACKGROUND: The integration of preventative health services into England's National Health Service is one of the cornerstones of current health policy. This integration is primarily envisaged through the removal of legislation that blocks collaborations between NHS organisations, local government, and community groups. AIMS AND OBJECTIVES: This paper aims to illustrate why these actions are insufficient through the case study of the PrEP judicial review. METHODS: Through an interview study with 15 HIV experts (commissioners, activists, clinicians, and national health body representatives), we explore the means by which the HIV prevention agenda was actively blocked, when NHS England denied responsibility for funding the clinically effective HIV pre-exposure prophylaxis (PrEP) drug in 2016, a case that led to judicial review. We draw on Wu et al.'s (Policy Soc 34:165-171, 2016) conceptual framing of 'policy capacity' in undertaking this analysis. RESULTS: The analyses highlight three main barriers to collaborating around evidence-based preventative health which indicate three main competence/capability issues in regard to policy capacity: latent stigma of 'lifestyle conditions' (individual-analytical capacity); the invisibility of prevention in the fragmented health and social care landscape related to issues of evidence generation and sharing, and public mobilisation (organizational-operational capacity); and institutional politics and distrust (systemic-political capacity). DISCUSSION AND CONCLUSION: We suggest that the findings hold implications for other 'lifestyle' conditions that are tackled through interventions funded by multiple healthcare bodies. We extend the discussion beyond the 'policy capacity and capabilities' approach to connect with a wider range of insights from the policy sciences, aimed at considering the range of actions needed for limiting the potential of commissioners to 'pass the buck' in regard to evidence-based preventative health.

Public health by organizational fix?

In August 2020 the UK government announced without warning the abolition of Public Health England (PHE), the principal UK agency for the promotion and protection of public health. We undertook a research programme seeking to understand the factors surrounding this decision. While the underlying issues are complex two competing interpretations have emerged: an 'official' explanation, which highlights the failure of PHE to scale up its testing capacity in the early weeks of the COVID-19 pandemic as the fundamental reason for closing it down and a 'sceptical' interpretation, which ascribes the decision to blame-avoidance behaviour on the part of leading government figures. This paper reviews crucial claims in these two competing explanations exploring the arguments for and against each proposition. It concludes that neither is adequate and that the inability adequately to address the problem of testing (which triggered the decision to close PHE) lies deeper in the absence of the norms of responsible government in UK politics and the state. However our findings do provide some guidance to the two new organizations established to replace PHE to maximize their impact on public health. We hope that this information will contribute to the independent national COVID inquiry.

Reforming the public health system in England.

The abolition of Public Health England (PHE) during the COVID-19 pandemic has raised concerns about the future of the public health system in the UK, particularly in England. The two new bodies established in haste to replace PHE prompt reflection on the executive agency's fate and the need to identify any lessons to ensure that a public health system is put in place that is fit for purpose. The UK COVID-19 Inquiry provides an opportunity to make recommendations, but it will need to act quickly to avoid recommendations being ignored. Two areas of concern are highlighted in this Viewpoint: the respective remits of the new bodies and their governance arrangements. Both issues demand urgent attention if the new structures are to succeed and avoid a similar fate to that which befell PHE. But underlying these concerns is a much larger challenge arising from the UK's broken political system. The political system in the UK suffers from several systemic weaknesses, including departmentalism, poor implementation, an inability or unwillingness of those in power to listen to the truth, and chronic short-termism at the expense of long-term planning. Overhauling the UK's dysfunctional political system is a prerequisite for successfully improving the public health system.

Effect of antibiotics in preventing hospitalizations from respiratory tract infections in children with Down syndrome.

BACKGROUND: Children with Down syndrome (DS) are at high risk of respiratory tract infections (RTIs) due to anatomical variations, comorbidities, and immune system immaturity. Evidence on interventions to reduce this risk is incomplete. This study aims to quantify the effect of antibiotics prescribed for RTIs in primary care on the subsequent risk of RTI-related hospitalization for children with DS versus controls. METHODS: We conducted a retrospective cohort study of 992 children with DS and 4874 controls managed by UK National Health Service General Practitioners (GPs) and hospitals as identified in CALIBER (Clinical disease research using LInked Bespoke studies and Electronic health Records), 1997-2010. Univariate and multivariate logistic regression were undertaken. RESULTS: In children with DS, the prescription of antibiotics following an RTI-related GP consultation did not significantly reduce the risk of RTI-related hospitalization in the subsequent 28 days (risk with antibiotics, 1.8%; without, 2.5%; risk ratio, 0.699; 95% confidence interval, 0.471-1.036). Subgroup analyses showed a risk reduction only in infants with DS, after adjustment for covariates. There was no reduction in risk for controls, overall or across subgroups. CONCLUSIONS: In conclusion, while prescription of antibiotics following RTI-related GP consultations were effective for infants with DS in reducing subsequent RTI-related hospitalization, this was not the case for older children with DS. We would encourage further high-quality cohort and randomized controlled trials to interrogate this finding, and to examine the impact of antibiotics on other endpoints, including symptom duration.

Correction to: Respiratory tract infection-related healthcare utilisation in children with Down's syndrome.

The original version of this article unfortunately contained an omission.

Respiratory tract infection-related healthcare utilisation in children with Down's syndrome.

PURPOSE: Children with Down's syndrome (DS) are prone to respiratory tract infections (RTIs) due to anatomical variation, immune system immaturity and comorbidities. However, evidence on RTI-related healthcare utilisation, especially in primary care, is incomplete. In this retrospective cohort study, we use routinely collected primary and secondary care data to quantify RTI-related healthcare utilisation in children with DS and matched controls without DS. METHODS: Retrospective cohort study of 992 children with DS and 4874 matched controls attending English general practices and hospitals as identified in Clinical disease research using LInked Bespoke studies and Electronic health Records (CALIBER) from 1997 to 2010. Poisson regression was used to calculate consultation, hospitalisation and prescription rates, and rate ratios. Wald test was used to compare risk of admission following consultation. The Wilcoxon rank-sum test was used to compare length of stay by RTI type and time-to-hospitalisation. RESULTS: RTI-related healthcare utilisation is significantly higher in children with DS than in controls in terms of GP consultations (adjusted RR 1.73; 95% CI 1.62-1.84), hospitalisations (adjusted RR 5.70; 95% CI 4.82-6.73), and antibiotic prescribing (adjusted RR 2.34; 95% CI 2.19-2.49). Two percent of children with DS presenting for an RTI-related GP consultation were subsequently admitted for an RTI-related hospitalisation, compared to 0.7% in controls. CONCLUSIONS: Children with DS have higher rates of GP consultations, hospitalisations and antibiotic prescribing compared to controls. This poses a significant burden on families. Further research is recommended to characterise healthcare behaviours and clinical decision-making, to optimise care for this at risk group.

Affordability and Non-Perfectionism in Moral Action.

One rationale policy-makers sometimes give for declining to fund a service or intervention is on the grounds that it would be 'unaffordable', which is to say, that the total cost of providing the service or intervention for all eligible recipients would exceed the budget limit. But does the mere fact that a service or intervention is unaffordable present a reason not to fund it? Thus far, the philosophical literature has remained largely silent on this issue. However, in this article, we consider this kind of thinking in depth. Albeit with certain important caveats, we argue that the use of affordability criteria in matters of public financing commits what Parfit might have called a 'mistake in moral mathematics'. First, it fails to abide by what we term a principle of 'non-perfectionism' in moral action: the mere fact that it is practically impossible for you to do all the good that you have reason to do does not present a reason not to do whatever good you can do. And second, when used as a means of arbitrating between which services to fund, affordability criteria can lead to a kind of 'numerical discrimination'. Various attendant issues around fairness and lotteries are also discussed.

Patient and public involvement in priority-setting decisions in England's Transforming NHS: An interview study with Clinical Commissioning Groups in South London sustainability transformation partnerships.

BACKGROUND: Patient and public involvement (PPI) in health-care commissioning decisions has always been a contentious issue. However, the current moves towards Sustainability and Transformation Partnerships (STPs) in England's NHS are viewed as posing the risk of reducing the impact of current structures for PPI. OBJECTIVE: To understand how different members in clinical commissioning groups (CCGs) understand PPI as currently functioning in their decision-making practices, and the implications of the STPs for it. DESIGN: Thematic analysis of 18 semi-structured interviews with CCG governing body voting members (e.g. clinicians and lay members), non-voting governing body members (e.g. Healthwatch representatives) and CCG staff with roles focussed on PPI, recruited from CCGs in South London STPs. RESULTS: There are contestations amongst CCG members regarding not only what PPI is, but also the role that it currently plays and could play in commissioning decision making in the context of STPs. Three main themes were identified: PPI is 'going out' into the community; PPI as a disruptive power; and PPI as co-production, a 'utopian dream'? CONCLUSIONS: Long-standing issues distinctive to PPI in NHS prioritization decisions are resurfacing with the moves towards STPs, particularly in relation to contradictions between the rhetoric of 'partnership' and reorganizations that foster more top-down control. The interviews reveal pervasive distrusts across a number of levels that are counterproductive to the collaborations upon which STPs rely. And it is argued that such distrust and contestations will continue until a formalized space for PPI in STP priority-setting is created.

Creating sustainable health care systems.

PURPOSE: In order to create sustainable health systems, many countries are introducing ways to prioritise health services underpinned by a process of health technology assessment. While this approach requires technical judgements of clinical effectiveness and cost effectiveness, these are embedded in a wider set of social (societal) value judgements, including fairness, responsiveness to need, non-discrimination and obligations of accountability and transparency. Implementing controversial decisions faces legal, political and public challenge. To help generate acceptance for the need for health prioritisation and the resulting decisions, the purpose of this paper is to develop a novel way of encouraging key stakeholders, especially patients and the public, to become involved in the prioritisation process. DESIGN/METHODOLOGY/APPROACH: Through a multidisciplinary collaboration involving a series of international workshops, ethical and political theory (including accountability for reasonableness) have been applied to develop a practical way forward through the creation of a values framework. The authors have tested this framework in England and in New Zealand using a mixed-methods approach. FINDINGS: A social values framework that consists of content and process values has been developed and converted into an online decision-making audit tool. RESEARCH LIMITATIONS/IMPLICATIONS: The authors have developed an easy to use method to help stakeholders (including the public) to understand the need for prioritisation of health services and to encourage their involvement. It provides a pragmatic way of harmonising different perspectives aimed at maximising health experience. PRACTICAL IMPLICATIONS: All health care systems are facing increasing demands within finite resources. Although many countries are introducing ways to prioritise health services, the decisions often face legal, political, commercial and ethical challenge. The research will help health systems to respond to these challenges. SOCIAL IMPLICATIONS: This study helps in increasing public involvement in complex health challenges. ORIGINALITY/VALUE: No other groups have used this combination of approaches to address this issue.

What are the requirements for developing a successful national registry of auditory implants? A qualitative study.

OBJECTIVES: Hearing loss is an area of unmet need, and industry is targeting this field with a growing range of surgically implanted hearing devices. Currently, there is no comprehensive UK registry capturing data on these devices; in its absence, it is difficult to monitor clinical and cost-effectiveness and develop national policy. Recognising that developing such a registry faces considerable challenges, it is important to gather opinions from stakeholders and patients. This paper builds on our systematic review on surgical registry development and aims to identify the specific requirements for developing a successful national registry of auditory implants. DESIGN: Qualitative study. PARTICIPANTS: Data were collected in two ways: (1) semistructured interviews with UK professional stakeholders; and (2) focus groups with patients with hearing loss. The interview and focus group schedules were informed by our systematic review on registry development. Data were analysed using directed content analysis. Judges mapped the themes obtained against a conceptual framework developed from our systematic review on registry development. The conceptual framework consisted of five categories for successful registry development: (1) planning, (2) registry governance, (3) registry dataset, (4) anticipating challenges, (5) implementing solutions. RESULTS: Twenty-seven themes emerged from 40 semistructured interviews with professional stakeholders and 18 themes emerged from three patient focus groups. The most important factor for registry success was high rates of data completion. Benefits of developing a successful registry of auditory implants include: strengthening the evidence base and regulation of auditory implants, driving quality and safety improvements, increased transparency, facilitating patient decision-making and informing policy and guidelines development. CONCLUSIONS: This study identifies the requirements for developing a successful national registry of auditory implants, benefiting from the involvement of numerous professional stakeholder groups and patients with hearing loss. Our approach may be used internationally to inform successful registry development.

The importance of population differences: Influence of individual characteristics on the Australian public's preferences for emergency care.

A better understanding of the public's preferences and what factors influence them is required if they are to be used to drive decision-making in health. This is particularly the case for service areas undergoing continual reform such as emergency and primary care. Accordingly, this study sought to determine if attitudes, socio-demographic characteristics and healthcare experiences influence the public's intentions to access care and their preferences for hypothetical emergency care alternatives. A discrete choice experiment was used to elicit the preferences of Australian adults (n=1529). Mixed logit regression analyses revealed the influence of a range of individual characteristics on preferences and service uptake choices across three different presenting scenarios. Age was associated with service uptake choices in all contexts, whilst the impact of other sociodemographics, health experience and attitudinal factors varied by context. The improvements in explanatory power observed from including these factors in the models highlight the need to further clarify their influence with larger populations and other presenting contexts, and to identify other determinants of preference heterogeneity. The results suggest social marketing programs undertaken as part of demand management efforts need to be better targeted if decision-makers are seeking to increase community acceptance of emerging service models and alternatives. Other implications for health policy, service planning and research, including for workforce planning and the possible introduction of a system of co-payments are discussed.

Reaching consensus on reporting patient and public involvement (PPI) in research: methods and lessons learned from the development of reporting guidelines.

INTRODUCTION: Patient and public involvement (PPI) is inconsistently reported in health and social care research. Improving the quality of how PPI is reported is critical in developing a higher quality evidence base to gain a better insight into the methods and impact of PPI. This paper describes the methods used to develop and gain consensus on guidelines for reporting PPI in research studies (updated version of the Guidance for Reporting Patient and Public Involvement (GRIPP2)). METHODS: There were three key stages in the development of GRIPP2: identification of key items for the guideline from systematic review evidence of the impact of PPI on health research and health services, a three-phase online Delphi survey with a diverse sample of experts in PPI to gain consensus on included items and a face-to-face consensus meeting to finalise and reach definitive agreement on GRIPP2. Challenges and lessons learnt during the development of the reporting guidelines are reported. DISCUSSION: The process of reaching consensus is vital within the development of guidelines and policy directions, although debate around how best to reach consensus is still needed. This paper discusses the critical stages of consensus development as applied to the development of consensus for GRIPP2 and discusses the benefits and challenges of consensus development.