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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.
Research dissemination and impact Helen Brooks and Penny Bee Chapter overview Research activity does not finish when data analysis is complete. Once research findings are available, researchers still have obligations to fulfil. These obligations include sharing the findings with different audiences and ensuring maximum impact from the study. A Research Handbook for Patient and Public Involvement Researchers Chapter 10: The process of sharing research learning with others can be an enjoyable but challenging one. Often it is referred to as dissemination, but
Principles of Ethical Research Owen Price and Lauren Walker Chapter overview By definition, research seeks to explore something that is unknown. This uncertainty means there is always the possibility of harm arising from research. There are many examples in both near and distant history of serious harm to participants as a consequence of research, including permanent disability and death. This is why it is of great importance that research projects are informed by sound ethics, properly planned, approved by an independent ethical board and rigorously monitored
Chapter 3: Quantitative research design Owen Price and Karina Lovell Chapter overview Quantitative research uses large samples and, as such, the findings of well-conducted studies can often be generalised to larger populations. However, it is important that studies are well-designed to avoid errors in their interpretation and/or the reporting of inaccurate results. Misleading results from quantitative studies can have serious negative implications such as wasting public money on flawed policies and subjecting service users to ineffective or harmful treatments
A Research Handbook for Patient and Public Involvement Researchers Chapter 7: Introduction to Qualitative Research Methods Helen Brooks, Penny Bee and Anne Rogers Chapter overview The term ‘qualitative research’ encompasses a wide range of different methods. What underpins these is a shared aim of understanding the meaning people attribute to experiences in their lives. It has been defined as an ‘interpretive approach concerned with understanding the meanings which people attach to actions, decisions, beliefs, values within their social world’ (Ritchie and
A Research Handbook for Patient and Public Involvement Researchers Chapter 1: Patient and Public Involvement (PPI) and the research process Andrew C Grundy Chapter overview This chapter defines and introduces the different stages of the research process: from identifying a problem, to reviewing the literature; then developing a research question; designing a study; obtaining funding and ethical approval; recruiting participants; collecting and analysing data; and reporting and disseminating findings. This chapter will outline how users of health services, their
Chapter 8: Introduction to Qualitative Data Analysis Helen Brooks, Penny Bee and Anne Rogers Chapter overview Qualitative data includes a range of textual (e.g. transcripts of interviews and focus groups) and visual (photographic and video) data. During qualitative analysis researchers make sense of this data gathered from research. Analysing the data by looking for common themes (known as thematic analysis) is one of the most common ways in which to do this and involves examining and recording patterns within the data relating to a specific research question
A Research Handbook for Patient and Public Involvement Researchers Chapter 2: Introduction to systematic reviews Kelly Rushton and Owen Price Chapter overview Health professionals must make sure that the treatments they provide are safe and have been proven to work. This means they must be able to access and understand all the available research relating to treatments that they use. There can be hundreds of research studies conducted on each treatment, so it is often not practical for busy health professionals to gather all of the evidence themselves. Deciding
A Research Handbook for Patient and Public Involvement Researchers Chapter 6: Psychometrics: designing and road testing new measurement scales Professor Patrick Callaghan Chapter overview Measurement scales (questionnaires) are often used in quantitative research to summarise the experiences of a group of participants, for example the number and range of symptoms they report, or their level of satisfaction with their care. We can use these questionnaires once to get a snap-shot of people’s scores at one point in time, or we can ask people to complete them on
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