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.
academics 7–9, 14, 17, 25, 41, 57, 77, 94, 118, 123–4, 136–40, 143–6, 149–50, 157–8, 169, 177–8, 181, 192, 240, 256, 257
altmetrics 158
see also exhibition
see also sci-art
see also participants; visitors
media use 50
overlooked 50
underserved 50
cabinets of curiosities 26
Café Philosophique 69
collaboration 5, 13, 31, 38, 71, 75, 79, 83, 89, 91–3, 96–102, 104, 106, 117–21, 123, 140, 142, 150, 155, 166–7, 170–1, 174, 188, 190–1, 195, 199–200, 208–11, 213–14, 265
consensus 175
consensus conference 4
see also SciCraft
Creative Commons 150
cross-media 50
data 9, 12, 42, 75, 78, 112, 144, 158, 169, 177, 179, 182, 186–7, 189–97, 207–9, 213–23, 232–3, 237–41, 246, 251–2, 259–62
digital ghetto 110
see also online persona
see also theatre
education 18, 24, 27–30, 42, 45, 51, 53, 58, 61–3, 64, 72, 90–3, 102–3, 113, 124–5, 148, 153, 155–7, 172, 174–5, 184, 188–91, 194, 196, 210–11, 214, 222, 228, 237, 239–41, 260
European Researchers Night 66
expert/ise 11, 25, 31, 35, 37–41, 45, 62–3, 65, 76, 100, 126, 132, 139, 152, 162, 172–3, 175, 177, 181–2, 187, 193–8, 200, 221, 251
‘extreme citizen science’ 197
see also citizen science
facilitation 70, 76–7, 80, 82, 93, 101, 105, 115, 131, 141, 171, 176, 181, 183–4, 189, 196, 217–20, 248
flexibility, in activities 58
funding 4–7, 20, 28, 31, 37, 51, 75–7, 83, 88, 91, 94–7, 100, 102–3, 116, 118–19, 122, 125–6, 129, 132, 134, 168–9, 174, 177, 182–3, 199, 206, 208–9, 213–14, 221, 224, 227, 230, 232, 234, 238, 246, 251, 253, 257–8, 265
see also crowd funding
health and safety 61
Identity Visitors Model 45
impact 6, 10, 12, 74, 85, 87, 93, 95, 102–5, 117–18, 131, 138, 140, 155, 157–8, 165, 167–8, 172–3, 175–6, 182, 195, 205–35, 237, 250, 252, 254, 265–6
definition 205
insurance 61
intellectual property 257
interaction 34, 58, 60–1, 66, 72–3, 75, 80, 85, 89, 104, 108, 112–18, 123, 128–9, 139, 141–3, 152–5, 158, 191–2, 200, 237, 242, 248–9
jury 161
see also citizen juries
knowledge broker 181
make and take activities 64
Makerspaces 199
media release 132
medical dissections 21
Mendelay 151
morality 236
motivation 4, 6, 11, 37, 42, 45, 47–8, 50, 95, 121, 124–6, 141, 149, 153–4, 184, 187–8, 199, 213, 228–30, 250–1
attendance 59
education 28
see also immersive experiences; impact
non-participant 59
see also audience
online persona 139
see also digital profile
open science 200
Open Space Technology 60
outcome 38, 46–8, 79, 93, 96, 99–100, 125–6, 163, 166–72, 175–7, 184–5, 205–9, 212–15, 221, 227–9, 242, 258
Pecha Kucha 60
planetariums 72
playfulness 124
poetry 75
press release see media release
psycho-graphic 42
public
QR codes 115
research impact see impact
science busking 61
science museum see museum
science writers 25
definition 131
ethical considerations 237
academic 138
ethical considerations 251
social policy 47
see also associations
storyboard 123
subject ambassadors 62
see also drama
think-tanks 181
underserved 50
see also audience
unfinished research 70
University of the Third Age 61
upstream engagement 169
user/s 22, 37–9, 47, 50, 71–3, 75, 109–15, 119, 124–8, 139–41, 148, 150, 152–4, 177, 192, 212, 219, 225, 237, 259
see also audience
see also audience; participant
WordPress 143