UK research funding bodies’ views towards public participation in health-related research decisions: an exploratory study

Background: A challenge facing science is how to renew and improve its relationship with society. One potential solution is to ensure that the public are more involved in the scientific process from the inception of research plans to scientific dissemination strategies. However, to date, little is known about how research funding bodies view public participation in research funding decisions, and how they involve the public into their strategies and practices. This paper provides insights into how key representatives working in the UK non-commercial research funding sector perceive public participation in health-related research funding decisions and the possible implications of these.<p></p> Methods: We conducted qualitative semi-structured interviews with 30 key stakeholders from 10 UK non-commercial research funding bodies that either partially or exclusively fund health-related research. The findings were written up in thematic narrative form.<p></p> Results: The different disciplines that encompass health research, and their differing frames of ‘science and society’, were found to influence how research funding bodies viewed and implemented public participation in research funding decisions. Relevant subsets of the public were more likely to be involved in research funding decisions than lay public, which could be linked to underlying technocratic rationales. Concerns about public participation stemmed from the highly professionalised scientific environment that the public were exposed to. Additionally, from a more positivist frame, concerns arose regarding subjective views and values held by the public that may damage the integrity of science.<p></p> Conclusion: Underlying assumptions of technocracy largely appear to be driving PP/PE within the research grant review process, even in funding bodies that have overtly democratic ideals. Some conceptions of technocracy were more inclusive than others, welcoming different types of expertise such as patient or research-user experiences and knowledge, while others suggested taking a narrower and more positivist view of expertise as techno-scientific expertise. For research to have its maximum impact when translated into healthcare, health policies and health technologies, there needs to be sensitivity towards multiple frames of knowledge, expertise and underlying values that exist across science and society

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

The challenges of communicating research evidence in practice: perspectives from UK health visitors and practice nurses

<p>Background: Health practitioners play a pivotal role in providing patients with up-to-date evidence and health information. Evidence-based practice and patient-centred care are transforming the delivery of healthcare in the UK. Health practitioners are increasingly balancing the need to provide evidence-based information against that of facilitating patient choice, which may not always concur with the evidence base. There is limited research exploring how health practitioners working in the UK, and particularly those more autonomous practitioners such as health visitors and practice nurses working in community practice settings, negotiate this challenge. This research provides a descriptive account of how health visitors and practice nurses negotiate the challenges of communicating health information and research evidence in practice.</p> <p>Methods: A total of eighteen in-depth telephone interviews were conducted in the UK between September 2008 and May 2009. The participants comprised nine health visitors and nine practice nurses, recruited via adverts on a nursing website, posters at a practitioner conference and through recommendation. Thematic analysis, with a focus on constant comparative method, was used to analyse the data.</p> <p>Results: The data were grouped into three main themes: communicating evidence to the critically-minded patient; confidence in communicating evidence; and maintaining the integrity of the patient-practitioner relationship. These findings highlight some of the daily challenges that health visitors and practice nurses face with regard to the complex and dynamic nature of evidence and the changing attitudes and expectations of patients. The findings also highlight the tensions that exist between differing philosophies of evidence-based practice and patient-centred care, which can make communicating about evidence a daunting task.</p> <p>Conclusions: If health practitioners are to be effective at communicating research evidence, we suggest that more research and resources need to be focused on contextual factors, such as how research evidence is negotiated, appraised and communicated within the dynamic patient-practitioner relationship.</p&gt

Primary care nurses' experiences of how the mass media influence frontline healthcare in the UK

Background: Mass media plays an important role in communicating about health research and services to patients, and in shaping public perceptions and decisions about health. Healthcare professionals also play an important role in providing patients with credible, evidence-based and up-to-date information on a wide range of health issues. This study aims to explore primary care nurses' experiences of how mass media influences frontline healthcare.<p></p> Methods: In-depth telephone interviews were carried out with 18 primary care nurses (nine health visitors and nine practice nurses) working in the United Kingdom (UK). Interviews were recorded and transcribed. The data was analysed using thematic analysis, with a focus on constant comparative analysis.<p></p> Results: Three themes emerged from the data. First, participants reported that their patients were frequently influenced by controversial health stories reported in the media, which affected their perceptions of, and decisions about, care. This, in turn, impinged upon participants' workloads as they had to spend additional time discussing information and reassuring patients. Second, participants also recalled times in their own careers when media reports had contributed to a decline in their confidence in current healthcare practices and treatments. Third, the participants in this study suggested a real need for additional resources to support and expand their own media literacy skills, which could be shared with patients.<p></p> Conclusion: In an ever expanding media landscape with greater reporting on health, nurses working in the primary care setting face increasing pressure to effectively manage media stories that dispute current health policies and practices. These primary care nurses were keen to expand their media literacy skills to develop critical autonomy in relation to all media, and to facilitate more meaningful conversations with their patients about their health concerns and choices.<p></p&gt