Health and medical research funding agencies' promotion of public engagement within research: a qualitative interview study exploring the UK context

Background: Public engagement (PE) has become a common feature of many liberal governmental agendas worldwide. Since the turn of this century there has been a succession of United Kingdom policy initiatives to encourage research funding agencies, universities and researchers to reconsider how they engage with citizens and communities. Although most funding agencies now explicitly promote PE within research, little empirical work has been carried out in this area. In this study, we explored why and how health and medical research funding agencies in the United Kingdom have interpreted and implemented their role to promote PE within research. Methods: Semi-structured interviews were carried out with 30 key informants from 10 agencies that fund health or medical research. Data were also gathered from agencies’ websites and documentation. The analysis was based on the constant comparative method. Results: Across agencies, we found that PE was being interpreted and operationalised in various different ways. The terminology used within funding agencies to describe PE seems to be flexibly applied. Disciplinary differences were evident both in the terminology used to describe PE and the drivers for PE highlighted by participants – with applied health science funders more aligned with participatory models of PE. Within the grant funding process PE was rarely systematically treated as a key component of research. In particular, PE was not routinely incorporated into the planning of funding calls. PE was more likely to be considered in the application and assessment phases, where it was largely appraised as a tool for enhancing science. Concerns were expressed regarding how to monitor and evaluate PE within research. Conclusions: This study suggests funding agencies working within specific areas of health and medicine can promote particular definitions of PE and aligned practices which determine the boundaries in which researchers working in these areas understand and practice PE. Our study also highlights how the research grant process works to privilege particular conceptions of PE and its purpose. Tensions are evident between some funders’ core concepts of traditional science and PE, and they face challenges as they try to embed PE into long-standing systems that prioritise particular conceptions of ‘scientific excellence’ in research

Understandings of participation in behavioural research: a qualitative study of gay and bisexual men in Scotland

An array of empirical research has emerged related to public participation in health research. To date, few studies have explored the particular perspectives of gay and bisexual men taking part in behavioural surveillance research, which includes the donation of saliva swabs to investigate HIV prevalence and rates of undiagnosed HIV. Semi-structured interviews were conducted with twenty-nine gay and bisexual men in Scotland who had participated in a bar-based survey. Thematic analysis of men’s accounts of their motives for participation and their perceptions of not receiving individual feedback on HIV status suggested a shared understanding of participation in research as a means of contributing to ‘community’ efforts to prevent the spread of HIV. Most men expressed sophisticated understandings of the purpose of behavioural research and distinguished between this and individual diagnostic testing. Despite calls for feedback on HIV results broadly, for these men feedback on HIV status was not deemed crucial

Social media as a space for support: Young adults’ perspectives on producing and consuming user-generated content about diabetes and mental health

Social media offer opportunities to both produce and consume content related to health experiences. However, people's social media practices are likely to be influenced by a range of individual, social and environmental factors. The aim of this qualitative study was to explore how engagement with user-generated content can support people with long-term health conditions, and what limits users’ adoption of these technologies in the everyday experience of their health condition. Forty semi-structured interviews were conducted with young adults, aged between 18 and 30 years, with experience of diabetes or a common mental health disorder (CMHD). We found that the online activities of these young adults were diverse; they ranged from regular production and consumption (‘prosumption’) of health-related user-generated content to no engagement with such content. Our analysis suggested three main types of users: ‘prosumers’ ‘tacit consumers’ and ‘non-engagers’. A key determinant of participants’ engagement with resources related to diabetes and CMHDs in the online environment was their offline experiences of support. Barriers to young adults’ participation in online interaction, and sharing of content related to their health experiences, included concerns about compromising their presentation of identity and adherence to conventions about what content is most appropriate for specific social media spaces. Based on our analysis, we suggest that social media do not provide an unproblematic environment for engagement with health content and the generation of supportive networks. Rather, producing and consuming user-generated content is an activity embedded within individuals’ specific health experiences and is impacted by offline contexts, as well as their daily engagement with, and expectations, of different social media platforms. © 2016 The Author

The social functionality of humor in group-based research

Citizens’ juries provide deliberative fora within which members of the public can debate complex policy issues. In this article, we reflect on our experience of undertaking three citizens’ juries addressing health inequalities, to explore the positive and facilitative role that humor can play within group-based research focusing on sensitive health policy issues. We demonstrate how both participants and researchers engaged in the production of humor in ways which troubled prevailing power dynamics and facilitated positive relationships. We conclude by recommending that researchers, particularly health policy researchers and those pursuing the kind of lengthy group-based fora associated with deliberative research, consider the positive role humor can play when engaged reflexively. In so doing, we make a major contribution to extant literature on both deliberative fora (which is yet to consider humor’s facilitative capacities) and the role of humor in qualitative (health) research (which rarely explores researcher complicity in humor production)

"The state they're in": unpicking fantasy paradigms of health improvement interventions as tools for addressing health inequalities

Globally, it is recognised that the fundamental causes of iniquitous health outcomes lie within unequal distributions of wealth and power. Internationally, however, policies and interventions persist in individualising the inequalities problem and targeting individual behaviours as the main solution. This approach has been argued to represent ‘Fantasy Paradigms’. This paper explores one example of such ‘Fantasy’ intervention from the perspective of health practitioners. Further, it explores opportunities for deepening practitioner understandings of the socio-political determination of health. Data were collected through in-depth interviews with 47 professionals involved in delivering a social prescribing programme in poor areas of Glasgow, Scotland. Data were analysed thematically across and within transcripts. Narratives highlighted different explanatory types concerning how the intervention could tackle health inequalities including: firm commitment to individualised approaches; hopeful pessimism; the social-determinants-of-health as an unpoliticised and nondeterministic backdrop to poor health; and finally, incomplete understanding of the social gradient as a population concept. Disrupted narratives of the social determination of health were also evident. This paper contributes new insights to existing debates on health inequalities discourse. These are conceptually important and identify opportunities for sharpening practitioner understanding of the social determinants of health which could in turn contribute to better, non-stigmatising primary care. It argues that re-engaging communities of practice with what is meant by determination of health is necessary and that there is a need to de-couple the policy aim of reducing health inequalities from the delivery of structurally competent and equality-focused public services

Young adults' experiences of seeking online information about diabetes and mental health in the age of social media

Background:  The Internet is a primary source of health information for many. Since the widespread adoption of social media, user-generated health-related content has proliferated, particularly around long-term health issues such as diabetes and common mental health disorders (CMHDs).  Objective:  To explore perceptions and experiences of engaging with health information online in a sample of young adults familiar with social media environments and variously engaged in consuming user-generated content.  Methods:  Forty semi-structured interviews were conducted with young adults, aged 18–30, with experience of diabetes or CMHDs. Data were analysed following a thematic networks approach to explore key themes around online information-seeking and content consumption practices.  Results:  Although participants primarily discussed well-rehearsed approaches to health information-seeking online, particularly reliance on search engines, their accounts also reflected active engagement with health-related content on social media sites. Navigating between professionally produced websites and user-generated content, many of the young adults seemed to appreciate different forms of health knowledge emanating from varied sources. Participants described negotiating health content based on social media practices and features and assessing content heuristically. Some also discussed habitual consumption of content related to their condition as integrated into their everyday social media use.  Conclusion:  Technologies such as Facebook, Twitter and YouTube offer opportunities to consume and assess content which users deem relevant and useful. As users and organizations continue to colonize social media platforms, opportunities are increasing for health communication and intervention. However, how such innovations are adopted is dependent on their alignment with users' expectations and consumption practices

Understanding young adults’ online engagement and health experiences in the age of social media: exploring diabetes and common mental health disorders

Production and consumption of text, image and video content about both diabetes and common mental health disorders (CMHDs), by individuals and organisations, has become commonplace since the widespread adoption of social media. Despite the increasing importance of these online spaces for health-related discussion few studies have fully explored people’s experiences of drawing on social media content around either diabetes or CMHDs. The aim of this study was to explore the multiple ways young adults engage with health-related content online and develop an understanding of how social media are used for health information and communication. A further aim was to explore the areas of convergence and divergence between professional producers’ perspectives on online resources about diabetes and CMHDs and prospective users’ perspectives. To explore these issues, a qualitative study was developed. Forty young adults, aged between 18 and 30 years, and six professional producers took part in semi-structured interviews. The key findings of the study reflect the increasing prominence of health-related user-generated content online. While continued reliance on search-engines for locating relevant content was evident, some participants discussed accessing health-related content as part of their everyday social media activity. Further, participants’ perceptions and experiences of support from family, friends and formal health services appeared to relate to their online practices: those who described least supportive resources offline discussed engaging most actively in production and consumption of health-related user-generated content. Participants also discussed what limited their production of health-related content, suggesting that production of content related to diabetes or CMHDs could compromise their presentation of self online. Disjunctures were evident between the perspectives of producers and potential users, with producers prioritising dissemination of generic information and young adults emphasising the consumption of tailored content. The findings of the study suggest key opportunities for exploiting the potential of social media to engage with users but highlight potential barriers to some individuals’ engagement

Policy congruence and advocacy strategies in the discourse networks of minimum unit pricing for alcohol and the soft drinks industry levy

BACKGROUND AND AIM: Public health policy development is subject to a range of stakeholders presenting their arguments to influence opinion on the best options for policy action. This paper compares stakeholders' positions in the discourse networks of two pricing policy debates in the UK: Minimum Unit Pricing for alcohol (MUP) and the Soft Drinks Industry Levy (SDIL). DESIGN: Discourse analysis was combined with network visualisation to create representations of stakeholders' positions across the two policy debates as they were represented in 11 national UK newspapers. SETTING: United Kingdom. OBSERVATIONS: For the MUP debate 1,924 statements by 152 people from 87 organisations were coded from 348 articles. For the SDIL debate 3,883 statements by 214 people from 175 organisations were coded from 511 articles. MEASUREMENTS: Network analysis techniques were used to identify robust argumentative similarities and maximise the identification of network structures. Network measures of size, connectedness and cohesion were used to compare discourse networks. FINDINGS: The networks for both pricing debates involve a similar range of stakeholder types and form clusters representing policy discourse coalitions. The SDIL network is larger than the MUP network, particularly the proponents' cluster with over three times as many stakeholders. Both networks have tight clusters of manufacturers, think tanks, and commercial analysts in the opponents' coalition. Public health stakeholders appear in both networks, but no health charity or advocacy group is common to both. CONCLUSION: A comparison of the discourse in the UK press during the policy development processes for Minimum Unit Pricing for alcohol and the Soft Drinks Industry Levy suggests greater cross-sector collaboration among policy opponents than proponents

Health Inequalities in Scotland: trends in deaths, health and wellbeing, health behaviours, and health services since 2000

Following a global pandemic and entering a cost-of-living crisis, concern around how health inequalities in Scotland have and will be impacted is considerable. This report synthesises a wide range of existing data and new analysis to establish the magnitude of the problem, where improvements or deterioration is evident and who is most affected. Over four detailed chapters, trends in social inequalities in health, health-related behaviours and, health and social care services in Scotland are presented

Public understandings of potential policy responses to health inequalities:Evidence from a UK national survey and citizens’ juries in three UK cities

A substantial body of research describes the distribution, causes and potential reduction of health inequalities, yet little scholarship examines public understandings of these inequalities. Existing work is dominated by small-scale, qualitative studies of the experiences of specific communities. As a result, we know very little about what broader publics think about health inequalities; and even less about public views of potential policy responses. This is an important gap since previous research shows many researchers and policymakers believe proposals for ‘upstream’ policies are unlikely to attract sufficient public support to be viable. This mixed methods study combined a nationally representative survey with three two-day citizens' juries exploring public views of health inequalities and potential policy responses in three UK cities (Glasgow, Manchester and Liverpool) in July 2016. Comparing public opinion elicited via a survey to public reasoning generated through deliberative processes offers insight into the formation of public views. The results challenge perceptions that there is a lack of public support for upstream, macro-level policy proposals and instead demonstrate support for proposals aiming to tackle health inequalities via improvements to living and working conditions, with more limited support for proposals targeting individual behavioural change. At the same time, some macro-economic proposals, notably those involving tax increases, proved controversial among study participants and results varied markedly by data source. Our analysis suggests that this results from three intersecting factors: a resistance to ideas viewed as disempowering (which include, fundamentally, the idea that health inequalities exist); the prevalence of individualising and fatalistic discourses, which inform resistance to diverse policy proposals (but especially those that are more ‘upstream’, macro-level proposals); and a lack of trust in (local and national) government. This suggests that efforts to enhance public support for evidence-informed policy responses to health inequalities may struggle unless these broader challenges are also addressed