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Index

Published online by Cambridge University Press:  10 July 2020

Edited by
Ellen Nolte ,
Sherry Merkur  and
Anders Anell
Assisted by
Jonathan North
Ellen Nolte
Affiliation:
London School of Hygiene and Tropical Medicine
Sherry Merkur
Affiliation:
European Observatory on Health Systems and Policies
Anders Anell
Affiliation:
Lunds Universitet, Sweden
Jonathan North
Affiliation:
European Observatory on Health Systems and Policies
Type
Chapter
Information
Achieving Person-Centred Health Systems
Evidence, Strategies and Challenges
 , pp. 387
Publisher: Cambridge University Press
Print publication year: 2020
Creative Commons
Creative Common License - CCCreative Common License - BYCreative Common License - NCCreative Common License - ND
This content is Open Access and distributed under the terms of the Creative Commons Attribution licence CC-BY-NC-ND 4.0 https://creativecommons.org/cclicenses/

Index

Note: The suffix n after a page number denotes information found in a footnote.

4PI National Involvement Standards (UK), 153, 154, 161–162
access to health care, 9, 63, 357–358, 363–364
accountable care organisations (ACOs) (USA), 249
adherence, 292
Affordable Care Act (2010) (USA), 236, 249
agesee older people
Alma-Ata Declaration of 1978, 43, 65, 85–86, 116, 137, 149
Amsterdam Declaration (1994), 350–351
anxiety, 273
Apoio Project, The Netherlands, 128–129
asylum seekers, 164, 166
attitudes to health care, 188–190
Australia
personal budgets, 262–264
use of e-health portals, 93
Austria, health literacy, 91–92
Autonomy Preference Index (API), 300
Bamako Initiative, 117
barefoot doctors, 116
behaviour change, 120–121, 190
Belgium, personal budgets, 263, 264–265, 273–274
benefits, welfare, 166
bias, 176
biomedical indicators, 80–81, 105, 328–329
black and ethnic minority groups, 164–165, 166
Brexit referendum, 145
British Social Attitudes survey, 188
budgets, personalsee personal budgets
Cape Verdean community, The Netherlands, 128–129
caresee health care
Care Quality Commission (CQC) (UK), 179, 361
centredness, 30–31
challenges facing health services and systems, 4, 317
change agents, 116
children, 243, 247–248, 267
choice
concept of, 9–10, 202–203
enhanced with personal budgets, 272–274
of health insurance, 51–53, 82, 229–252
implications of, 69
of provider, 41, 49–51, 191–192, 201–220, 364, 366
right to, 63, 357–358
chronic disease, 4–5, 6, 320–321, 324–326, 335–336 see also diabetes
citizenship, 125, 203, 351, 352
civil society, 69, 149, 180, 303, 351, 358
clinician-patient relationshipsee doctor-patient relationship
Cochrane Center (US), 151
cognition, 292
CollaboRATE, tool, 298–299 see also patient experience measurement
collaboration, 155, 284 see also shared decision-making (SDM)
comfort, physical, 26
Commonwealth Fund international surveys, 182–183
communication, 25, 27, 46, 100–101, 174–175, 295
communities, 43–45, 89
community health workers, 116
community participation in health systems development, 43–45
evolution of, 115–117
value of, 118–122
definition, 122–123
constructs and rationales, 123–126
examples and comparisons of, 128–133
outcomes, lessons and way forward, 133–137
compensation schemes, 361, 367
competition, between insurers, 230–237
complaints, 177, 367, 368
confidentiality, 63, 350, 357–358, 362–363
consent, informed, 63, 287–289, 362
consultation, 90, 148, 155, 157
consumerist approach, 66, 125, 147, 148, 218
Consumers United for Evidence-Based Healthcare (CUE), 151
contracting, selective, 232–234, 235, 236
contribution, to research, 155
control, user, 155, 162–163, 166, 218, 272–274
Control Preferences Scale, 300
coordination of care, 5, 25
co-production, 9–10, 155–156, 218–219
cost-effectiveness
of personal budgets, 275–276
of shared decision-making, 293
costs, of health insurance, 247
Crossing the Quality Chasm, report, 76
data
epidemiological, 190
on views and experiences of care, 47–49, 83–84, 97–100, 176–177
data collection, 157, 181, 182, 187
electronic, 192, 193
data protection, 362–363
decision aids, 285, 289, 290–291, 294, 296, 297, 302 see also information
Decision Conflict Scale (DCS), 300
decision-making (shared)see shared decision-making (SDM)
decision-making, health care, 41, 78–79, 117
definitions of person-centredness, 1, 22–24
democratic rationalesee empowerment rationale
Denmark
choice in health care system, 204
use of e-health portals, 93
diabetes, 61, 76, 322–323, 334–335, 335–336
Digital Economy and Society Index (DESI), 94
digital technologies, 85, 92–97
direct payments, 260, 261, 263, 265–266, 268, 273 see also personal budgets
disability rights, 53, 65, 146–147
disability support, 262–264, 264–265, 268
disadvantaged social groups, 7–8, 51, 88, 92, 163, 208, 292
discrimination, 146, 164–165
disease, chronic, 4–5, 6, 320–321, 324–326, 335–336 see also diabetes
disease management programmes (DMPs), 249, 323
disease-control, 60, 327–329, 333–334, 338–339, 340
disputes, 367
diversity, in those involved in research, 164–165, 166
doctor-patient relationship, 27, 174–175, 330 see also interpersonal level of care
role of power, 81–82, 292, 297
shared decision-making, 285–286, 291–292, 296–297
EBM (evidence-based medicine), 83–84, 270
economics, 213, 217
educationsee also health literacy
for involvement in research, 166
low educational attainment, 50–51, 209
for person-centred care, 25, 100–101
for self-management, 61, 321–322, 322–323
for shared decision-making, 303
efficiency of health care, 9, 215–216
e-health portalssee online health services
elderly see older people
Emilia-Romagna, Italy, 129–130
emotional factors, 26, 292
empathy, 174–175
empowerment, 2, 19, 120–121, 124–125, 128, 136, 146–147
engagement, patient, 296–297, 302–303 see also shared decision-making (SDM)
Englandsee also United Kingdom
choice in health care system, 205–206, 211, 213–214, 215
education and training for person-centred care, 101
national PROMs programme, 186–187
personal budgets 263, 265–6, 272–273, 274, 275
self-management support, 338–339
Enthoven, Alain, 230
epidemiological data, 190
equity, 51, 211–213 see also inequalities in health care
Estonia
public attitudes to health care, 189
use of e-health portals, 93
ethical argumentsee philosophical argument
ethics, of shared decision-making, 57, 292, 293–294
ethnic minorities, 164–165, 166
Eurobarometer surveys, 189
European frameworks for patients’ rights, 350–356, 370–384
European Institute for Public Participation, 131
European Union
Brexit referendum, 145
patients’ rights, 351–356
public attitudes to health systems, 189
Value+, 152–153
EuroQol measure (EQ-5D), 184–185, 186
evidence-based medicine (EBM), 83–84, 270
experiences of health caresee patient experience measurement
experiential knowledge, 163
Expert Patient Programme, 323, 327
expertise, 83–84, 155, 162–163
feedback, 48, 104, 105, 177, 182, 193 see also patient experience measurement
financial incentives, 105–106, 278, 297–298
4PI National Involvement Standards (UK), 153, 154, 161–162
France, shared decision-making, 290
friends and family, involvement, 26, 271, 301
Friends and Family Test (FFT) (England), 181–182
funding, PPI research, 166
Germany
health insurance, 232–234, 237, 240, 242–243
measurement of patients’ experience, 180
group-based self-management programmes, 325
Health and Social Care Act (2008), 361
Health and Social Care Act (2012), 206
health behaviours, 120–121, 190
health care
access to, 9, 63, 357–358, 363–364
attitudes to, 188–190
decision-making, 41, 78–79, 117
efficiency of, 9, 215–216
environment, 28
interpersonal aspects, 75, 81, 174–175
quality of, 9, 75–76, 191–192, 213–215, 250–251, 349
evaluation, 46–49, 79–80
health care professionals, 301, 327, 332–334
Health Care Quality Indicators project (OECD), 183
Health Foundation (UK), 30
health insurance, 51–53, 82, 229–252
health law, 358–359
health literacy, 87–92, 297, 303 see also education; information
health needs surveys, 190
health services and systemssee also community participation in health systems development
challenges, 4
evaluating quality, 46–49, 79–80
person-centred, 9, 76
health services and systems (cont.)
public attitudes towards, 188–190
redesign, 102–106
rural Scotland, 130–131
Hippocratic Oath, 348
human rights, 348–350 see also patients’ rights
ICPHR (International Collaboration for Participatory Health Research), 152, 153, 162
impact of person-centred strategies, 67–68, 159–162
improvements in health care, 191–192, 194–195
incentive schemes, 105–106
inclusivity, for involvement in research, 164–165, 166
income, low, 209, 235, 236–237
independent living, 53, 65
inequalities in health care, 7–8, 51, 94–95, 116, 292, 327 see also equity
informationsee also decision aids; literacy
access to, 50–51, 87
on health insurance, 52, 53, 239–241
online resources, 85
on personal budgets, 56, 271, 278
right to, 63, 357–358, 365–366
for self-management support, 323
informed consent, 63, 287–289, 362
Institute for Quality Assurance and Transparency in Health Care (IQTIG) (Germany), 180
Institute of Medicine, 27, 174, 320, 321
instrumental rationale, 2, 46, 50, 66, 124, 127–128, 134
insurance, health, 51–53, 82, 229–252
integration of care, 5, 25
International Collaboration for Participatory Health Research (ICPHR), 152, 153, 162
international surveys of patients’ experiences, 182–183
internetsee online
internet use, 93–95
interpersonal level of care, 75, 81, 174–175 see also doctor-patient relationship
interviews, 177, 193
intrinsic values, 2, 46, 50, 66
INVOLVE, NIHR, 45, 147, 149–150, 154–155, 156
involvement, 2, 9, 19, 43–45, 66, 69 see also co-production; empowerment
Israel, health insurance, 233, 234, 239–240, 242, 243–244, 247–248
Italy
health care system, 129–130
measurement of patients’ experience, 180–181
knowledge, experiential, 163
Latvia, consent forms, 362
learning difficulties, 163
legal rights, patients’, 359–360
legislation
for patients’ rights, 63, 349, 358–361
for shared decision-making, 287–289, 302–303
liability, professionalsee professional liability
literacysee also education; information
health, 87–92, 297, 303
health insurance, 246–247
litigation, 292–293
living well, with chronic conditions, 327–329
London Patient Choice Project, 209
long-term care, 267
low income, 209, 235, 236–237, 243–244
managerialist approach, 66, 125, 147, 148, 218
managing health conditionssee self-management
market competition, 66, 208, 217, 218
McWhinney, Ian, 286
measurementsee patient experience measurement
mediation, 367, 369
Medicaid (USA), 236–237, 239
medical care, traditional, 24
medical professionalism, 82
medical records, 93, 363
Medicare (USA), 236, 239, 240–241, 242, 269
medicine, evidence-based (EBM), 83–84, 270
mental health, 128–129, 155, 163
personal budgets, 265, 268, 272–274, 275
Millennium Development Goals, 117
moral rights, patients’, 360–361
motives for participation in health care systems, 132–133
multimorbidity, 4–5
National Health Service (NHS) (UK), 188, 190, 205, 210, 213
NHS Constitution, 179, 361
and self-management support, 338–339
National Institute for Health Research (NIHR) (UK), 45, 147, 149–150, 155–156
National Involvement Partnership project (UK), 153, 154
neo-liberalism, 66, 134, 145–146, 203
The Netherlands
Cape Verdean community, 128–129
effect of patient choice on surgeons, 212
health insurance, 233, 234–235, 237, 240, 242, 248
personal budgets, 263, 266–267
quality of care, 213
shared decision-making, 290
Nightingale, Florence, 22
Norway, choice in health care system, 206, 211
nursing, 22, 27–28, 30
Obamacare, 237
Observing Patient Involvement Scale, OPTION, 300
older people, 4, 164, 166, 209
access to health information, 87
internet use, 93–95
personal budgets for home care services, 264, 265
online
discussion forums, 7, 85
health services, 92–97
surveys, 192
opinion surveys, 188–190
Organisation for Economic Cooperation and Development (OECD), 183, 192, 194
Organisational Health Literacy Responsiveness (Org-HLR) framework, 89–91
organisationssee health services and systems
outcomes, 47–48, 184–188, 193–194
participation, 2, 9, 19, 43–45, 66, 69 see also co-production; empowerment
Patient Act, Sweden (2015), 58, 287, 386
patient and public involvement (PPI) in research, 44–46, 84, 145–146
competing approaches, 146–148
examples of, 149–154
levels of, 154–156
at different research stages, 156–158
impact of, 159–162
ensuring inclusivity, 164–165
methodological challenges and next steps, 162–166
patient decision aids, 285, 289, 290–291, 294, 296, 297, 302 see also information
patient engagement, 296–297, 302–303 see also shared decision-making (SDM)
patient experience measurement, 46–49, 79–80, 83–84, 86, 97–100, 173–175 see also CollaboRATE, tool
purpose, methods and scope, 175–177
measuring patient satisfaction, 177–183
patient-reported experience measures (PREMs), 47, 178–183
patient-reported outcome measures (PROMs), 47–48, 184–188, 193–194
using the data, 190–192
future developments, 192–195
Patient-Centered Outcomes Research Institute (PCORI), USA, 150–152, 153
patients’ relationship with doctorssee doctor-patient relationship
patients’ rightssee rights, patients’
patients’ values, 286, 294
PatientsLikeMe, online forum, 7, 48, 182
PCORI (Patient-Centered Outcomes Research Institute), 150–152, 153
people-centred care, 32–33 see also person-centredness
performance data, 99–100
performance-based rationale, 2, 46, 50, 66, 124, 127–128, 134
personal budgets, 54–56, 259, 277–278
defining terms, 260–261
in different countries, 261–269
effectiveness, 272–276
potential difficulties, 270–272
personalized care planning, 193
person-centredness
definitions, 1, 19–24
evolution of concept, 9–11, 13, 21–28
impact of strategies, 67–68, 159–162
and patient-centredness, 28–33
perspectives, micro, meso and macro levels, 11, 75–76, 85–86
perspectives of different stakeholders, 34–35
philosophical rationale, 2, 46, 50, 66
physician-patient relationshipsee doctor-patient relationship
Picker-Commonwealth Program for Patient-Centered Care, 22, 27, 174
planning, health care, 41, 78–79, 117
Poland
patient satisfaction questionnaire, PASAT, 179
public attitudes to health care, 189
policies, for shared decision-making, 289–291, 302
policy design, 220
population surveys, 188–190
power, in doctor-patient relationship, 81–82, 292, 297, 300
power-sharing, 44, 57, 68–69, 125, 136
PPI in researchsee patient and public involvement (PPI) in research
privacy, 98, 362–363
private health insurance, 233, 236–237, 239
professional
expertise, 83–84, 155, 162–163
liability, 367
professionalism, medical, 82
psychotherapy, client-centred, 22
public
attitudes to health care, 188–190
influence, 303
qualitative data collection, 176, 177, 193
quality of care, 9, 75–76, 191–192, 213–215, 250–251, 349
evaluation, 46–49, 79–80
quality of life, 184–185, 274–275, 324, 328
quantitative data collection, 176
questionnaires, 176, 177–183, 184
RAPPORT study, 159
rational choice model, 121–122
reasonable patient standard, 288–289
redress, 63, 357–358, 366–368
referendum, on UK’s membership of the European Union, 145
refugees, 164, 166
regulation, 230–231
relationship, doctor-patientsee doctor-patient relationship
reporting systems, 99–100
representativeness, 164
research, patient and public involvement insee patient and public (PPI) involvement in research
research methodology, 162–163
resilience, of health systems, 9
reviews of person-centred care, 19–20
rights, patients’ 58, 62–4, 65–6, 287–288, 347–348
defining, 348–350
European frameworks, 350–356
implementation in EU member states, 358–361, 370–384
types of, 357–361
self-determination and confidentiality, 362–363
access and choice, 363–365
information, 365–366
redress, 366–368
need for further development, 368–369
risk adjustment, 52–53, 231, 232, 243, 247–249, 250, 251
Rogers, Carl, 22
Royal College of General Practitioners (UK), 30
Royal College of Nursing (UK), 30
satisfaction, of patients, 177–183, 250, 292
Scotlandsee also United Kingdom
direct payments, 263, 268
rural primary health care, 130–131
second opinion, 364–365
selective contracting, 232–234, 235, 236
self-care / self-help, 65, 292, 319
self-confidence, 275
self-determination, 63, 357–358, 362
self-management, 3, 59–62, 77, 317–319
definition of, 319–322
approaches across Europe, 322–324
evidence, 324–326
challenges, 326–336
living well / quality of life, 327–329
outcomes, 329–332
responsibility, 333–334
moving forward, 336–339
sentiment analysis, 193
Shaping Our Lives, project, 162, 164
shared decision-making (SDM), 3, 56–59, 193, 283–285
definition of, 285–286
decision aids, 285, 289, 290–291, 294, 296, 297, 302
legislation, 287–289
policy, 289–291
outcomes, 291–294, 299–300
measurement of, 298–301, 302
training for, 294–295
barriers to implementation, 295–298
research trends and moving forward, 301–303
skills, for person-centred care, 100–101
Slovakia, health insurance, 233, 235, 237, 241, 242, 245, 248, 249
social determinants of health, 88
social media, 7
and older people, 95
social networking sites, 85
used for feedback, 48, 98–100, 182, 193
social processes, benefits of groups, 325
society, civil, 69, 149, 180, 303, 351, 358
statutory health insurance (SHI), 232, 237, 239
stress, 44, 133, 273, 301
subsidies
for health insurance, 231, 236–237
tax, 235, 236
substantive rationale, 2, 46, 50, 66, 124, 127–128, 134
support
to facilitate choice of insurer, 239–241
to facilitate choice of provider, 209, 213, 219
to manage personal budgets, 270–271
online communities, 85
for self-management, 321–322, 324–340
surgeons, 212
surveys
health care decision-making, 78–79
patient satisfaction, 177–183
patients’ experiences, 176
population, 188–190
Sustainable Development Goals (SDGs), 117
Sweden
choice in health care system, 207–208, 211, 212, 214
Patient Act (2015), 58, 287, 386
personal assistance budgets, 263, 268–269
switching between health insurers, 242–246
Switzerland, health insurance, 233, 235–236, 237, 240, 242, 248–249
symptoms and side-effects, management of, 77
systems levelsee health services and systems
technology
digital, 85, 92–97
medical, 5, 7
time
for consultations, 293
waiting times for treatment, 183, 189, 205, 363–364
training
for person-centred care, 100–101
for self-management, 327
for shared decision-making, 289–290, 294–295
treatment burden, 76–77, 194
United Kingdomsee also England; National Health Service (NHS); Scotland
4PI National Involvement Standards, 153, 154, 161–162
Brexit referendum, 145
British Social Attitudes survey, 188
INVOLVE, NIHR, 45, 147, 149–150, 154–155, 156
national patient experience surveys, 178–179, 181–182
shared decision-making, 290
United States of America (USA)
accountable care organisations (ACOs), 249
Commonwealth Fund international surveys, 182–183
health insurance, 232, 233, 236–237, 239, 240–241, 242, 245–246
Patient-Centered Outcomes Research Institute (PCORI), 150–152, 153
personal care budgets, 263, 269, 274
Washington State, 289
Universal Declaration of Human Rights (UDHR), 348
user control, 155, 162–163, 166, 218, 272–274
utilitarian rationale, 2, 46, 50, 66, 124, 127–128, 134
Value+, 152–153, 153–154
value for money, personal budgets, 275–276
values, patients’, 286, 294
Veatch, Robert, 283
video interviews, 193
virtual clinics, 194
voice, 9–10, 68, 191–192, 218
voluntary health insurance (VHI), 234, 237, 238, 239, 246
volunteering 132 n
vulnerable social groups, 7–8, 51, 88, 92, 163, 208, 292
waiting times, 183, 189, 205, 363–364
Wanless report (2002), 127
Washington State, USA, 289
waste, in health care, 302
websites
feedback on health care, 48, 98–100, 182, 193
health insurers, 239–241
welfare benefits, 166
well-being, 87, 184, 203, 274–275
World Health Organisation
Declaration of Alma Ata, 43, 65, 85–86, 116, 137, 149
system responsiveness, 174

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  • Index
  • Edited by Ellen Nolte, London School of Hygiene and Tropical Medicine, Sherry Merkur, Anders Anell, Lunds Universitet, Sweden
  • Assisted by Jonathan North
  • Book: Achieving Person-Centred Health Systems
  • Online publication: 10 July 2020
  • Chapter DOI: https://doi.org/10.1017/9781108855464.017
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  • Index
  • Edited by Ellen Nolte, London School of Hygiene and Tropical Medicine, Sherry Merkur, Anders Anell, Lunds Universitet, Sweden
  • Assisted by Jonathan North
  • Book: Achieving Person-Centred Health Systems
  • Online publication: 10 July 2020
  • Chapter DOI: https://doi.org/10.1017/9781108855464.017
Available formats
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  • Index
  • Edited by Ellen Nolte, London School of Hygiene and Tropical Medicine, Sherry Merkur, Anders Anell, Lunds Universitet, Sweden
  • Assisted by Jonathan North
  • Book: Achieving Person-Centred Health Systems
  • Online publication: 10 July 2020
  • Chapter DOI: https://doi.org/10.1017/9781108855464.017
Available formats
×