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This handbook is written for patients and members of the public who want to understand more about the approaches, methods and language used by health-services researchers. Patient and public involvement (PPI) in research is now a requirement of most major health-research programmes, and this book is designed to equip these individuals with the knowledge and skills necessary for meaningful participation. Edited by award-winning mental-health researchers, the book has been produced in partnership with mental-health-service users and carers with experience of research involvement. It includes personal reflections from these individuals alongside detailed information on quantitative, qualitative and health-economics research methods, and comprehensively covers all the basics needed for large-scale health research projects: systematic reviews; research design and analysis using both qualitative and quantitative approaches; health economics; research ethics; impact and dissemination. This book was developed during a five-year research programme funded by the UK’s National Institute for Health Research (NIHR) called Enhancing the Quality of User Involved Care Planning in Mental Health Services (EQUIP). The handbook clearly outlines research practices, and gives an insight into how public and patient representatives can be involved in them and shape decisions. Each chapter ends with a reflective exercise, and there are also some suggested sources of additional reading. People who get involved in health research as experts from experience now have a textbook to support their research involvement journey.

Clare Wilkinson and Emma Weitkamp

, 2013 ). These types of projects are applicable across a range of disciplines, including social sciences and the humanities. The chapter considers the ways in which non-experts and researchers might collaborate, including approaches like the Science Shops movement, as well as projects driven by individuals’ interests, like hackspaces and the maker movement. Some of these might not, at first look, appear fruitful areas for research communication, but there are opportunities to tap into the existing interests and needs of people that also provide avenues for

in Creative research communication
Open Access (free)
Designing and road testing new measurement scales
Patrick Callaghan

method (Goodwin, 1996) is the most widely used method in determining cut-off scores and involves asking experts to rate the probability that the item will be an accurate measure of the concept. If the wrong cut-off score is used, a person’s outcome status may not be correctly recorded. Cut-off 3. Ensuring reliability Reliability is the degree of stability with which a scale measures what it is designed to measure. There are several different types of reliability that you might come across: • internal consistency • test-retest • parallel form • inter-rater Internal

in A research handbook for patient and public involvement researchers
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Clare Wilkinson and Emma Weitkamp

deliberation centrally privileges the concept of ‘reason’, but avoids a reductionist definition. Reason is not restricted ‘to established “reasoners”’, the role of experts (and perhaps we might consider here researchers) alone and forms of reasoning including only reified knowledge (O’Mahony, 2013 : 130). Instead, reason can be taken to mean that ‘all are open to be persuaded by the arguments of others’ (O’Mahony, 2013 : 130). The rise in new media technologies, new social movements and changes to communicative paradigms have allowed for more deliberative opportunities to

in Creative research communication
Andrew Balmer and Anne Murcott

some way; the noun affect refers to the realm of emotion, a term commonly used by psychologists and psychiatrists, and typically pronounced differently from affect as a verb, by placing the emphasis on the first syllable, rather than the second. Affect is often confused with effect and vice versa. Ambiguous means the meaning is unclear; ambivalent means being undecided or in two minds about something or someone. Authoritative means knowledgeable or expert, whereas authoritarian means dictatorial or controlling. Can means that it

in The craft of writing in sociology
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Clare Wilkinson and Emma Weitkamp

’’’, resulting in an increase in participatory, co-production and consultation approaches. Similarly, the relationship between experts and publics within communication settings has altered. As we will discuss in more detail in Chapter 8 , there has been an embracing of the language of participation and engagement where public communication is concerned. People as participants can be informed, but equally might be consulted or involved in collaboration (International Association of Public Participation, 2007 ), with the ability in some cases to affect decision making

in Creative research communication
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Clare Wilkinson and Emma Weitkamp

popularisers, particularly where the emerging scientific community was concerned. The second half of the [nineteenth] century was, after all, a period when cultural authority was particularly important to the men of science. They were especially keen on pushing clergymen and women out of science, since both were seen to be strong supporters of the Church and as barriers to the establishment of a self-defining community of experts. (Lightman, 2007 : 28) Consequently, those occupying more religious stances, as well as females, who were increasingly argued not

in Creative research communication
Clare Wilkinson and Emma Weitkamp

international level which warrants attention and sharing beyond national boundaries. Science communication Taking the sciences as a starting point, the time since the mid-1980s has seen an increased interest in how best to communicate scientific issues. Science communication, broadly understood to focus on the public communication of scientific subjects to non-experts, was brought to the fore by the highly influential Bodmer Report, titled The Public Understanding of Science , in 1985 (The Royal Society 1985 ), and subsequently the scientific

in Creative research communication
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Clare Wilkinson and Emma Weitkamp

). They can provide excellent opportunities to work with and support others ‘on the ground’, as well as in the capacity of a judge or expert who might be consulted. Don’t underestimate or talk down to those of a younger age and avoid trying to relate to them too much through jargon or cultural references, unless these are things in which you are naturally interested. Whilst there are many opportunities to communicate with school- or college-aged young people, this is not the only option. Researchers often look to schools as an obvious focus for communication

in Creative research communication
Helen Brooks, Penny Bee, and Anne Rogers

understanding and position yourself as a ‘learner’ and not an ‘expert’. Probing further explore issues raised by participants with insightful follow-up questions A Research Handbook for Patient and Public Involvement Researchers There are various strategies researchers can employ to increase the quality of data collected during interviews (Figure 21). Careful consideration should be given to the design of the study prior to commencing the project and sufficient flexibility should be factored into the design to allow for the iterative approach inherent in qualitative

in A research handbook for patient and public involvement researchers