User involvement, research and health inequalities: developing new directions

Placed in the context of broader discussions and developments about service user involvement in research and evaluation, this paper looks at the role that user involvement research may play in health inequalities research. It examines the pressures for and against such user involvement research, its different expressions and ideological relations, and what particular contribution it may have to offer in researching health inequalities. In considering how it may help in developing substantive understandings of these issues and the role it may play in the future, particular attention is paid to the issue of enabling the diverse involvement of service users in order not to reinforce existing exclusions and barriers in research, policy and practice.     

Health promotion, advocacy and health inequalities: a conceptual framework

Advocacy has often been described as a key strategy for theachievement of health promotion aims, but multiple and conflictingdefinitions and usages exist. The concept itself may be unnecessarilyintimidating. Advocacy work can take place at the level of both‘cases’ and ‘causes’. Two main goalsunderpin health advocacy—protection of the vulnerable(representational advocacy) and empowerment of the disadvantaged(facilitational advocacy). This paper attempts to integrateexisting models and definitions into a conceptual frameworkfor considering the role of advocacy in addressing health inequalities.It argues that we need to pay some attention to the diversityof values and goals of health promotion if we are to understandwhich models and approaches to health advocacy apply and inwhat context. This paper concludes that advocacy for healthfulfils two functions: as a form of practice and as a usefulstrategy for a discipline which has to be self-promoting aswell as health-promoting in order to survive in the competitivepolitical environment of contemporary health work.     

Young people's perspectives on addressing UK health inequalities: utopian visions and preferences for action

Introduction

It is increasingly recognised by UK researchers and population health advocates that an important impetus to effective policy action to address health inequalities is activation of public dialogue about the social determinants of health and how inequalities might be addressed. The limited body of existing scholarship reaches varying conclusions on public preferences for responding to health inequalities but with consensus around the importance of tackling poverty. Young people's perspectives remain underexplored despite their increasingly visible role in activism across a range of policy issues and the potential impact of widening inequalities on their generation's health and wellbeing.

Methods

Six groups of young people (39 in total) from two UK cities (Glasgow and Leeds) were engaged in online workshops to explore views on health inequalities and potential solutions. Inspired by calls to employ notions of utopia, artist–facilitators and researchers supported participants to explore the evidence, debating solutions and imagining a more desirable society, using visual and performance art. Drawing together data from discussions and creative outputs, we analysed participants' perspectives on addressing health inequalities across four domains: governance, environment, society/culture and economy.

Findings

Proposals ranged from radical, whole-systems change to support for policies currently being considered by governments across the United Kingdom. The consensus was built around embracing more participatory, collaborative governance; prioritising sustainability and access to greenspace; promoting inclusivity and eliminating discrimination and improving the circumstances of those on the lowest incomes. Levels of acceptable income inequality, and how best to address income inequality were more contested. Individual-level interventions were rarely presented as viable options for addressing the social inequalities from which health differences emanate.

Conclusion

Young people contributed wide-ranging and visionary solutions to debates around addressing the enduring existence of health inequalities in the United Kingdom. Their reflections signal support for ‘upstream’ systemic change to achieve reductions in social inequalities and the health differences that flow from these.

Public Contribution

An advisory group of young people informed the development of project plans. Participants shaped the direction of the project in terms of substantive focus and were responsible for the generation of creative project outputs aimed at influencing policymakers.     

Childhood disadvantage and health inequalities: a framework for policy based on lifecourse research

Tackling health inequalities is moving up the policy agenda of richer societies like the UK, with governments looking for evidence to guide policy review and development. Observational studies of how childhood disadvantage compromises health in adulthood are an important part of the evidence base, but are largely inaccessible to the policy community. We develop a framework which captures the findings of these studies. Our framework highlights how disadvantage in childhood adversely affects both socio-economic circumstances and health in adulthood through a set of interlocking processes. Key among these are children's developmental health (their physical, cognitive and emotional development) and health behaviours, together with the associated educational and social trajectories. In breaking down the link between childhood disadvantage and adult health into its constituent elements, the framework provides a basis for understanding where and how policies can make a difference. The paper argues that the process of policy review and development needs to include both new programmes and the mainstream policies in which they are embedded.     

The gradient in health inequalities among families and children: a review of evaluation frameworks

Public health policies and interventions that seek to tackle the social gradient in health need to be more adequately evaluated. The GRADIENT Project sets out to recommend public health policy options which effectively tackle health inequalities and address the gradient in health determinants among families and children in Europe. This work is underpinned by the development of a dedicated evaluation framework—a scheme that elaborates steps in a process of assessment which can act as a useful guide for decision makers. This paper presents the results from a narrative review, based on realist review principles, of 34 evaluation frameworks. It uses a set of analytical criteria, drawn from the EUHPID health development model, the Ottawa Charter for Health Promotion, and the wider literature on health inequalities, to analyse these frameworks. The findings reveal that no one suitable evaluation framework exists to evaluate whether policies and/or interventions targeting children and families reduce the health gradient. It is suggested that this work will be useful in assessing the complex nature of public health interventions and their evaluation. It will be used to develop an evaluation framework to guide decision makers to begin to understand the key drivers at each stage of the policy development and implementation cycle.     

A review of UK housing policy: ideology and public health

OBJECTIVES: The aim of this paper is to review UK public health policy, with a specific reference to housing as a key health determinant, since its inception in the Victorian era to contemporary times. REVIEW: This paper reviews the role of social and private housing policy in the development of the UK public health movement, tracing its initial medical routes through to the current socio-economic model of public health. The paper establishes five distinct ideologically and philosophically driven eras, placing public health and housing within liberal (Victorian era), state interventionist (post World War 1; post World War 2), neoliberal (post 1979) and "Third Way" (post 1997) models, showing the political perspective of policy interventions and overviewing their impact on public health. The paper particularly focuses on the contemporary model of public health since the Acheson Report, and how its recommendations have found their way into policy, also the impact on housing practice. CONCLUSIONS: Public health is closely related to political ideology, whether driven by the State, individual or partnership arrangements. The current political system, the Third Way, seeks to promote a sustainable "social contract" between citizens and the State, public, private and voluntary organizations in delivering community-based change in areas where health inequalities can be most progressively and successfully addressed.     

The public health implications of HIV criminalization: past,current, and future research directions

While public health remains the primary site of authority for preventing HIV transmission, recent shifts in the biopolitics of HIV have heightened tensions in the institutional and discursive relations through which the sexual lives of people living with HIV and broader HIV epidemics are regulated. Most notably, over the past decade, criminal justice responses to HIV have gained considerable traction. The growing use of the criminal law to regulate perceived HIV transmission risks has occasioned considerable controversy among people living with HIV, community-based AIDS organizations, health-care providers, public health authorities, prosecutors, judges, and the legal community. This article introduces a special section of Critical Public Health focused on the public health implications of HIV criminalization. The article reviews past and current work on the topic, situates the contributions made by the articles published in the special section, and outlines directions for future inquiry.     

Tackling health inequalities in Norway: applying linear and non-linear models in the policy-making process

This article follows the Norwegian policy-making process on social inequalities in health applying models for policy development with focus on linear and non-linear movements. The focus is process-oriented following the introduction of a comprehensive, cross-sectoral strategy to tackle socioeconomic health inequalities in Norway. A case study design was selected and two theoretical frameworks have guided the research. Whitehead's model for health inequality intervention (2007) follows a linear theory-based logic, underpinning the idea that implicit or explicit theories or formulation of a distinct problem causally predicts design and outcome of policy programmes. The second approach is based on Kingdon's (2003) perception that policy-making often occurs unpredictably within independent streams of the policy formulation process. The model focuses on the non-linearity of the flow and timing of policy action. The present case suggests that both linear and non-linear models are necessary for understanding of the Norwegian policy-making process on social inequalities in health. Whitehead's model is a conceptual model focussing on the linear structure of the policy process, useful for identifying the different entry points for choice of direction in policy-making. Kingdon's multiple streams model is useful for gaining insight into the agenda-setting process that may be predictable, but may also be unpredictable and steer non-linear movements. The model identifies components necessary for a problem to rise on the political agenda with a particular focus on the role of policy entrepreneurs.     

Heart health inequalities in Canada: modules, theory and planning

It is well known that prevalence and incidence rates of cardiovasculardisease (CVD) and CVD risk factors are not equally distributedamong socioeconomic groups. Known risk factors account for part,but not all of unequally distributed CVD rates. Socioeconomicconditions and psychosocial dynamics may explain another pareof the increased CVD rates. Theoretically, it may be possibleto lower CVD rates and CVD risk factor prevalence among lowersocioeconomic status (SES) groups by using a community development(socio-environment) strategy directed towards changes in socioenvrronmentalrisk conditions and psychosocial risk factors, rather than CVDrisk factors per Se. This article describes a protocol for sucha strategy based upon the planning work of Canadian health professionals,loosely organized under a project titled ‘Heart HealthInequalities in Canada’ This protocol incorporates baselinedata on CVD and CVD risk factor prevalence, but is premisedon actions negotiated between community organizations and healthauthorities, rather than defined unilaterally by health authorities.As such, program design activities and evaluation will differfrom a more general population-based risk factor reduction strategy.     

Developing an evidence base for policies and interventions to address health inequalities: the analysis of "public health regimes"

Systematic reviews have become an important methodology in the United Kingdom by which research informs health policy, and their use now extends beyond evidence-based medicine to evidence-based public health and, particularly, health inequalities policies. This article reviews the limitations of systematic reviews as stand-alone tools for this purpose and suggests a complementary approach to make better use of the evidence. That is, systematic reviews and other sources of evidence should be incorporated into a wider analytical framework, the public health regime (defined here as the specific legislative, social, political, and economic structures that have an impact on both public health and the appropriateness and effectiveness of public health interventions adopted). At the national level this approach would facilitate analysis at all levels of the policy framework, countering the current focus on individual interventions. It could also differentiate at the international level between those policies and interventions that are effective in different contexts and are therefore potentially generalizable and those that depend on particular conditions for success.     

Inclusion of equity in economic analyses of public health policies: systematic review and future directions

Objectives : To assess current approaches to inclusion of equity in economic analysis of public health interventions and to recommend best approaches and future directions. Methods : We conducted a systematic review of studies that have used socioeconomic position (SEP) in cost‐effectiveness analyses. Studies were identified using MedLine, EconLit and HEED and were evaluated based on their SEP specific inputs and methods of quantification of the health and financial inequalities. Results : Twenty‐nine relevant studies were identified. The majority of studies comparing two or more interventions left interpretation of the size of the health and financial inequality differences to the reader. Newer approaches include: i) use of health inequality measures to quantify health inequalities; ii) inclusion of financial impacts, such as out‐of‐pocket expenditures; and iii) use of equity weights. The challenge with these approaches is presenting results that policy makers can easily interpret. Conclusions : Using CEA techniques to generate new information about the health equity implications of alternative policy options has not been widely used, but should be considered to inform future decision making. Implications for public health : Inclusion of equity in economic analysis would facilitate a more nuanced comparison of interventions in relation to efficiency, equity and financial impact.     

'Making evidence count': a framework to monitor the impact of health services research

Objectives: The objective of this study is to develop a framework to measure the impact of primary health care research, describe how it could be used and propose a method for its validation. Design: Literature review and critical appraisal of existing models of research impact, and integration of three into a comprehensive impact framework. Setting: Centre of Research Excellence focusing on access to primary health care services in Australia. Participants: Not applicable. Interventions: Not applicable. Main outcome measure: The Health Services Research Impact Framework, integrating the strengths of three existing models of research impact. Conclusion: In order to ensure relevance to policy and practice and to provide accountability for funding, it is essential that the impact of health services research is measured and monitored over time. Our framework draws upon previously published literature regarding specific measures of research impact. We organise this information according to the main area of impact (i.e. research related, policy, service and societal) and whether the impact originated with the researcher (i.e. producer push) or the end‐user (i.e. user pull). We propose to test the utility of the framework by recording and monitoring the impact of our own research and that of other groups of primary health care researchers.     

Practitioner perspectives on tackling health inequalities: Findings from an evaluation of healthy living centres in Scotland

Little is known about how health practitioners tasked with tackling health inequalities account for their own programmes and actions. This paper attempts to address this gap by drawing on data collected in the course of an evaluation of the Healthy Living Centre (HLC) programme, which was designed to address the wider determinants of health, in particular social exclusion and socioeconomic disadvantage, through targeting services at the most deprived local communities. Six Scottish HLC case studies explored in depth how HLC practitioners conceptualised ‘health inequalities’ and applied the construct to legitimate their public health and health improvement work. Practitioners drew on multiple explanations of health inequalities, sought to apply holistic approaches to service provision, and developed activities that took account of classed practices intended to overcome class-related disempowerment and stigma. They discussed the challenges of positioning services to appeal to and reach target groups and the difficulties in assessing the impact of their work on reducing health inequalities. Responses to tackling inequalities were variable across time and between HLCs, resulting from uneven learning about target groups and their changing needs, an evolving policy agenda and consideration given to the longer-term sustainability of HLC sites. Although practitioners' work to address health inequalities was limited by the programme's focus on working with disadvantaged groups, findings illustrate how classed practices are linked to the challenges of attracting and successfully engaging with such groups. Practitioner accounts highlighted the importance of gaining acceptance to overcome barriers to engagement with disadvantaged communities, the time required to achieve a satisfactory level of engagement, the proximity of service providers to clients and the adaptability of services necessary to address evolving needs.     

Shared decision making in clinical medicine: past research and future directions

CONTENT: Shared medical decision making is a process by which patients and providers consider outcome probabilities and patient preferences and reach a health care decision based on mutual agreement. Shared decision making is best used for problems involving medical uncertainty. During the process the provider-patient dyad considers treatment options and consequences and explores the fit of expected benefits and consequences of treatment with patient preferences for various outcomes. This paper reviews the literature on shared medical decision making. Several questions are considered. Although several studies suggest that patients do not want to be involved in decision making, these studies typically fail to separate decisions about technical aspects of treatment from preferences for outcomes. There is considerable evidence that patients want to be consulted about the impact of treatment. Studies on the acceptability of shared decision making for physicians have produced inconsistent results. Shared decision making is more acceptable to younger and better-educated patients. It remains unclear whether shared decision making requires expensive video presentations or whether the same results can be obtained with simpler methods, such as the decision board. We conclude that shared medical decision making is an important development in health care. More research is necessary to identify the effects of shared decision making on patient satisfaction and health outcomes. Further, more research is necessary in order to evaluate the most effective methods for engaging patients in decisions about their own health care.     

Research use and support needs, and research activity in social care: a cross-sectional survey in two councils with social services responsibilities in the UK

The purpose of this study was to investigate the level of research activity, research use, research interests and research skills in the social care workforce in two UK councils with social service responsibilities (CSSRs). A cross-sectional survey was conducted of the social care workforce in two CSSRs (n = 1512) in 2005. The sample was identified in partnership with the councils, and included employees with professional qualifications (social workers and occupational therapists); staff who have a role to assess, plan and monitor care; service managers; commissioners of services; and those involved with social care policy, information management and training. The survey achieved a response rate of 24% (n = 368). The Internet was reported as an effective source of research information; conversely, research-based guidelines were reported to have a low impact on practice. Significant differences were found in research use, by work location, and postgraduate training. Most respondents saw research as useful for practice (69%), and wanted to collaborate in research (68%), but only 11% were planning to do research within the next 12 months. Having a master's degree was associated with a greater desire to lead or collaborate in research. A range of research training needs, and the preferred modes of delivery were identified. Support to increase research activity includes protected time and mentorship. The study concludes that a range of mechanisms to make research available for the social care workforce needs to be in place to support evidence-informed practice. Continual professional development to a postgraduate level supports the use and production of evidence in the social care workforce, and promotes the development of a research culture. The term research is used to include service user consultations, needs assessment and service evaluation. The findings highlight a relatively large body of the social care workforce willing to collaborate and conduct research. Councils and research support systems need to be developed to utilise this relatively untapped potential.     

Understanding lay perspectives on socioeconomic health inequalities in Britain: a meta‐ethnography

The links between socioeconomic circumstances and health have been extensively studied in Britain but surprisingly few studies consider lay perspectives. This is problematic given popular efforts to reduce health inequalities appear to be based on assumption that public understanding is limited (this is evident in efforts to raise awareness of both ‘upstream’ causes of health inequalities and health‐damaging behaviours). The results of this meta‐ethnography, involving 17 qualitative studies, fundamentally challenge this assumption. We show, first, that people who are living with socioeconomic disadvantage already have a good understanding of the links between socioeconomic hardship and ill‐health. Indeed, participants’ accounts closely mirror the research consensus that material‐structural factors represent ‘upstream’ determinants of health, while ‘psychosocial’ factors provide important explanatory pathways connecting material circumstances to health outcomes. Despite this, people living in disadvantaged circumstances are often reluctant to explicitly acknowledge health inequalities, a finding that we suggest can be understood as an attempt to resist the stigma and shame of poverty and poor health and to (re)assert individual agency and control. This suggests that work to increase public awareness of health inequalities may unintentionally exacerbate experiences of stigma and shame, meaning alternative approaches to engaging communities in health inequalities discussions are required.     

The limitations of targeting to address inequalities in health: a case study of road traffic injury prevention from the UK

So-called ‘Third Way’ responses to inequalities in health have encouraged the ‘targeting’ of evidence-based interventions at those communities at high risk in order to improve health outcomes. In the UK, one area of persisting inequalities in mortality and morbidity risk is from injury, and there have been recent national and local incentives for relevant agencies to ‘address deprivation’ in delivering reductions in injury through ‘targeting’ particular communities in the context of an evidence-based approach to policy making. This case study draws on interviews with those responsible for implementing policy in London in order to explore the tensions inherent in such approaches. We suggest that ‘taking deprivation into account’ by targeting is unlikely to be a fruitful route for addressing inequalities in health, as it devolves responsibility to a level which has no power to address the determinants of inequality.