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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.

Andrew C. Grundy

carers and family members, and other members of the public can be involved in these different research stages, and demonstrate the impact that this involvement can have. Examples of different ways of involving and engaging public members in research studies are drawn from the Enhancing the Quality of User-Involved Care Planning in Mental Health Services (EQUIP) research programme. Learning objectives By the end of this chapter you should be able to: 1. Understand the different stages of the research process 2. Understand the impact of Patient and Public Involvement in

in A research handbook for patient and public involvement researchers
Open Access (free)
Designing and road testing new measurement scales
Patrick Callaghan

project developed a good quality PROM for assessing user and carer involvement in care planning, the first such measure of its kind in mental health. 83 BEE (RESEARCH) PRINT.indd 83 11/05/2018 16:15 This chapter will examine the origins of measurement scales in research by considering the science of psychological testing. In particular the chapter will provide a brief definition of a measurement scale, outline why scales are used, examine the design and evaluation of scales, discuss what the responses to scales mean, outline advantages and limitations of their use

in A research handbook for patient and public involvement researchers

This book was developed during a five-year research programme funded by the UK’s National Institute for Health Research (NIHR). This study aimed to improve service user and carer involvement in care planning in mental health services. The study was called Enhancing the Quality of User Involved Care Planning in Mental Health Services (EQUIP). Its aim is to help other public and patient representatives increase their understanding and skills in research methods. The EQUIP programme used a range of different research methods to achieve its goals, and you will read

in A research handbook for patient and public involvement researchers

An overview of the EQUIP study The EQUIP study aimed to improve service user and carer involvement in care planning in mental health services. We co-developed with service users and carers a training package for mental health professionals so that they would be better equipped to involve users and carers in their care. Service users and carers helped to design, shape and conduct the EQUIP study and you can learn more about their experiences in Chapter 1. During the EQUIP programme, we worked with service users and carers to develop a new instrument, a patient

in A research handbook for patient and public involvement researchers
Helen Brooks, Penny Bee, and Anne Rogers

involvement be instilled • How in the care planning process? is the role and influence of individuals, teams and organisational • What factors in achieving high quality user-involved care planning? are carers’ experiences of the care planning process for people • What with severe mental illness? are professionals’ perceptions and experiences of delivering • What mental health care planning and involving service users and carers A Research Handbook for Patient and Public Involvement Researchers In relation to EQUIP, qualitative research methods were used to explore current

in A research handbook for patient and public involvement researchers
Helen Brooks, Penny Bee, and Anne Rogers

, you’re not expected to know what all this jargon means. Carer 1013, male, 27, cares for a brother with a diagnosis of bipolar disorder A Research Handbook for Patient and Public Involvement Researchers Figure 26 Examples of themes from an EQUIP paper exploring the role of carers within the care planning process Confidentiality as a barrier to involving carers in mental health care planning So it was like huge barricades up around this trivial information, trivial stuff. So… that in itself as you can imagine, was intensely upsetting and, and infuriating. But it

in A research handbook for patient and public involvement researchers
Patrick Callaghan and Penny Bee

Quantitative Data Analysis Patrick Callaghan and Penny Bee Chapter overview Quantitative data analysis makes sense of numerical data. We often refer to quantitative data analysis as statistical analysis, and you may see this term used in published research papers. We can use numbers to summarise the experiences or characteristics of a group of participants, for example their average age or the number of symptoms they report. We can also use numbers to look at people’s behaviours, experiences and views, for example the number of people using mental health

in A research handbook for patient and public involvement researchers
Owen Price and Lauren Walker

consent if they lack capacity. A person may be considered to have capacity if they can understand information provided about the study and the advantages and disadvantages of taking part. Importantly, they must also be able to form an independent decision on this and be able to communicate their decision to researchers. 121 BEE (RESEARCH) PRINT.indd 121 11/05/2018 16:16 Discussion point 1: Considering the above, read case example A in Figure 28. Figure 28 Case example A You are a service user researcher doing an interview study on a mental health ward. You are

in A research handbook for patient and public involvement researchers
Kelly Rushton and Owen Price

’s effect e.g. mental health symptoms, quality of life, patient satisfaction 28 BEE (RESEARCH) PRINT.indd 28 11/05/2018 16:14 Figure 5 Developing a review question using PICO Pop ulat ion on ention Interv Ou is ar tco p om C In working-age adults with anxiety, is Cognitive Behavioural Therapy more effective than Citalopram in reducing anxiety symptoms A Research Handbook for Patient and Public Involvement Researchers Figure 5 provides an example of how these four categories can be used to develop a focused research question. me However, not all review

in A research handbook for patient and public involvement researchers