Index

doi:10.1017/9781108855464.017

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

Book contents

Index

Save book to Kindle

Save book to Dropbox

Save book to Google Drive