Disentangling patient and public involvement in healthcare decisions: why the difference matters
Open accessAbstract
Patient and public involvement has become an integral aspect of many developed health systems and is judged to be an essential driver for reform. However, little attention has been paid to the distinctions between patients and the public, and the views of patients are often seen to encompass those of the general public. Using an ideal‐type approach, we analyse crucial distinctions between patient involvement and public involvement using examples from Sweden and England. We highlight that patients have sectional interests as health service users in contrast to citizens who engage as a public policy agent reflecting societal interests. Patients draw on experiential knowledge and focus on output legitimacy and performance accountability, aim at typical representativeness, and a direct responsiveness to individual needs and preferences. In contrast, the public contributes with collective perspectives generated from diversity, centres on input legitimacy achieved through statistical representativeness, democratic accountability and indirect responsiveness to general citizen preferences. Thus, using patients as proxies for the public fails to achieve intended goals and benefits of involvement. We conclude that understanding and measuring the impact of patient and public involvement can only develop with the application of a clearer comprehension of the differences.
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
A good illustration of this approach is the Canadian Directive on Automated Decision-Making [35] which introduces four 'Impact Assessment Levels' associated with different 'Impact Level Requirements'.
“A good illustration of this approach is the Canadian Directive on Automated Decision-Making [35] which introduces four 'Impact Assessment Levels' associated with different 'Impact Level Requirements'.”
From Beyond explainability: justifiability and contestability of algorithmic decision systems (2022) · cites this paper as [35]
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
The self-check needs the paper’s full text.
Cites
Managing Legitimacy: Strategic and Institutional Approaches
Suchman, M. C. (1995) · The Academy of Management Review · doi:10.2307/258788 · Cited by 19,903 · see citing works
Rethinking the Public Sphere: A Contribution to the Critique of Actually Existing Democracy
Fraser, N. W. (2014) · Routledge eBooks · doi:10.4324/9781315822174-11 · Cited by 5,471 · see citing works
Fenichel Pitkin, H. (1967) · doi:10.1525/9780520340503 · Cited by 5,162 · see citing works
Rethinking the Public Sphere: A Contribution to the Critique of Actually Existing Democracy
Fraser, N. (1990) · Social Text · doi:10.2307/466240 · Cited by 5,147 · see citing works
Analysing and Assessing Accountability: A Conceptual Framework <sup>1</sup>
Bovens, M. (2007) · European Law Journal · doi:10.1111/j.1468-0386.2007.00378.x · Cited by 2,667 · see citing works
Greenhalgh, T., & Peacock, R. (2005) · BMJ · doi:10.1136/bmj.38636.593461.68 · Cited by 2,045 · cited 1× · see citing works
“…and including literature and ideal-type characteristics, we have used a snowballing approach (such as pursuing references of references) (Greenhalgh and Peacock 2005) based on previous literature on patient and public involvement in healthcare as well as on literature on citizen and…”
MethodA Typology of Public Engagement Mechanisms
Rowe, G., & Frewer, L. J. (2005) · Science Technology & Human Values · doi:10.1177/0162243904271724 · Cited by 1,860 · see citing works
Carman, K. L., Dardess, P., Maurer, M. E., Sofaer, S., Adams, K., Bechtel, C., & Sweeney, J. (2013) · Health Affairs · doi:10.1377/hlthaff.2012.1133 · Cited by 1,770 · see citing works
‘Accountability’: An Ever‐Expanding Concept?
Mulgan, R. (2000) · Public Administration · doi:10.1111/1467-9299.00218 · Cited by 1,609 · see citing works
Democracy and Legitimacy in the European Union Revisited: Input, Output <i>and</i> ‘Throughput’
Schmidt, V. A. (2013) · Political Studies · doi:10.1111/j.1467-9248.2012.00962.x · Cited by 1,213 · see citing works
The Concept of Representation in Contemporary Democratic Theory
Urbinati, N., & Warren, M. E. (2008) · Annual Review of Political Science · doi:10.1146/annurev.polisci.11.053006.190533 · Cited by 956 · see citing works
Accountabilities: Five Public Services
Day, P. (1987) · Medical Entomology and Zoology · Cited by 620 · see citing works
The impact of patient and public involvement on UK NHS health care: a systematic review
Mockford, C., Staniszewska, S., Griffiths, F., & Herron-Marx, S. (2012) · International Journal for Quality in Health Care · doi:10.1093/intqhc/mzr066 · Cited by 570 · see citing works
Economic integration, democracy and the welfare state
Scharpf, F. W. (1997) · Journal of European Public Policy · doi:10.1080/135017697344217 · Cited by 553 · see citing works
Examining Citizen Participation: Local Participatory Policy Making and Democracy
Michels, A., & de Graaf, L. (2010) · Local Government Studies · doi:10.1080/03003930.2010.494101 · Cited by 553 · see citing works
Designing Deliberative Democracy
(2008) · Cambridge University Press eBooks · doi:10.1017/cbo9780511491177 · Cited by 518 · see citing works
Accountability and health systems: toward conceptual clarity and policy relevance
Brinkerhoff, D. W. (2004) · Health Policy and Planning · doi:10.1093/heapol/czh052 · Cited by 458 · see citing works
Rothstein, B. (2009) · American Behavioral Scientist · doi:10.1177/0002764209338795 · Cited by 411 · see citing works
Legitimacy Problems in Deliberative Democracy
Parkinson, J. R. (2003) · Political Studies · doi:10.1111/1467-9248.00419 · Cited by 393 · see citing works
Citizens as Partners: Information, Consultation and Public Participation in Policy-Making
Koprić, I. (2006) · Cited by 382 · see citing works
International Encyclopedia of Political Science
Berg‐Schlosser, D., Morlino, L., & Badie, B. (2011) · HAL (Le Centre pour la Communication Scientifique Directe) · Cited by 360 · see citing works
A multidimensional conceptual framework for analysing public involvement in health services research
Oliver, S. R., Rees, R. W., Clarke‐Jones, L., Milne, R., Oakley, A., Gabbay, J., Stein, K., Buchanan, P., & Gyte, G. M. (2008) · Health Expectations · doi:10.1111/j.1369-7625.2007.00476.x · Cited by 344 · see citing works
Lay Participation in Health Care Decision Making: A Conceptual Framework
Charles, C. A., & DeMaio, S. E. (1993) · Journal of Health Politics Policy and Law · doi:10.1215/03616878-18-4-881 · Cited by 321 · see citing works
Tritter, J. Q. (2009) · Health Expectations · doi:10.1111/j.1369-7625.2009.00564.x · Cited by 302 · see citing works
Self-citationCitizen Participation: Models and Methods
Callahan, K. (2007) · International Journal of Public Administration · doi:10.1080/01900690701225366 · Cited by 267 · see citing works
What do patients and the public want from primary care?
Coulter, A. (2005) · BMJ · doi:10.1136/bmj.331.7526.1199 · Cited by 264 · see citing works
Theoretical directions for an emancipatory concept of patient and public involvement
Gibson, A., Britten, N., & Lynch, J. (2012) · Health An Interdisciplinary Journal for the Social Study of Health Illness and Medicine · doi:10.1177/1363459312438563 · Cited by 232 · see citing works
Survey Article: Citizen Panels and the Concept of Representation*
Brown, M. B. (2006) · Journal of Political Philosophy · doi:10.1111/j.1467-9760.2006.00245.x · Cited by 230 · see citing works
Swers, M. L. (2005) · Legislative Studies Quarterly · doi:10.3162/036298005x201617 · Cited by 216 · see citing works
Public involvement in health care
Florin, D., & Dixon, J. (2004) · BMJ · doi:10.1136/bmj.328.7432.159 · Cited by 212 · see citing works
PPI, paradoxes and Plato: who's sailing the ship?: Table 1
Ives, J., Damery, S. L., & Redwood, S. (2012) · Journal of Medical Ethics · doi:10.1136/medethics-2011-100150 · Cited by 207 · see citing works
Fotaki, M. (2010) · Public Administration · doi:10.1111/j.1467-9299.2010.01879.x · Cited by 199 · see citing works
Representativeness, legitimacy and power in public involvement in health-service management
Martin, G. P. (2008) · Social Science & Medicine · doi:10.1016/j.socscimed.2008.09.024 · Cited by 179 · see citing works
(2003) · doi:10.1093/0199264996.001.0001 · Cited by 177 · see citing works
de Freitas, C., & Martin, G. P. (2015) · Social Science & Medicine · doi:10.1016/j.socscimed.2015.04.019 · Cited by 164 · see citing works
Patient involvement in Europe – a comparative framework
Dent, M., & Pahor, M. (2015) · Journal of Health Organization and Management · doi:10.1108/jhom-05-2015-0078 · Cited by 155 · see citing works
Peeters, Y., & Stiggelbout, A. M. (2009) · Value in Health · doi:10.1111/j.1524-4733.2009.00610.x · Cited by 133 · see citing works
The Dual Influence of Self-Interest and Societal Interest in Public Opinion
Funk, C. L. (2000) · Political Research Quarterly · doi:10.1177/106591290005300102 · Cited by 130 · see citing works
(2002) · doi:10.1177/136078040200700405 · Cited by 119 · see citing works
Warren, M. E. (2008) · Cambridge University Press eBooks · doi:10.1017/cbo9780511491177.004 · Cited by 114 · see citing works
Patient and public involvement: models and muddles
Forbat, L., Hubbard, G., & Kearney, N. (2009) · Journal of Clinical Nursing · doi:10.1111/j.1365-2702.2008.02519.x · Cited by 93 · see citing works
Active Citizenship and Effective Public Services and Programmes: How Can We Know What Really Works?
Brannan, T., John, P. C., & Stoker, G. (2006) · Urban Studies · doi:10.1080/00420980600676626 · Cited by 78 · see citing works
PUBLICS, PATIENTS, CITIZENS, CONSUMERS? POWER AND DECISION MAKING IN PRIMARY HEALTH CARE
Callaghan, G., & Wistow, G. (2006) · Public Administration · doi:10.1111/j.1467-9299.2006.00603.x · Cited by 65 · see citing works
Citizenship in Contemporary Europe
Lister, M., & Pia, E. (2008) · Edinburgh University Press eBooks · doi:10.3366/edinburgh/9780748633418.001.0001 · Cited by 60 · see citing works
There is no paradox with PPI in research
Staley, K. (2013) · Journal of Medical Ethics · doi:10.1136/medethics-2012-100512 · Cited by 58 · see citing works
Obtaining public input for health‐systems decision‐making: Past experiences and future prospects
Abelson, J., Forest, P., Eyles, J. D., et al. (2002) · Canadian Public Administration · doi:10.1111/j.1754-7121.2002.tb01074.x · Cited by 53 · see citing works
The Politics of Public Deliberation
Hendriks, C. M. (2011) · Palgrave Macmillan UK eBooks · doi:10.1057/9780230347564 · Cited by 45 · see citing works
Playing with fire? Swedish mobilization for participatory democracy
Amnå, E. (2006) · Journal of European Public Policy · doi:10.1080/13501760600693952 · Cited by 41 · see citing works
Expert and non-expert knowledge in medical practice
Nordin, I. (2000) · Medicine Health Care and Philosophy · doi:10.1023/a:1026446214010 · Cited by 34 · see citing works
Tenbensel, T. (2010) · Social Science & Medicine · doi:10.1016/j.socscimed.2010.08.005 · Cited by 31 · see citing works
Choice cuts: parsing policymakers’ pursuit of patient empowerment from an individual perspective
Schlesinger, M. J. (2010) · Health Economics Policy and Law · doi:10.1017/s174413311000006x · Cited by 31 · see citing works
Hopkinson, J. B., & Richardson, A. M. (2014) · Palliative Medicine · doi:10.1177/0269216314556924 · Cited by 31 · see citing works
Conceptualizing Lay Participation in Professional Health Care Organizations
Marent, B., Forster, R., & Nowak, P. (2013) · Administration & Society · doi:10.1177/0095399713489829 · Cited by 28 · see citing works
Docteur, E., & Coulter, A. (2012) · SSRN Electronic Journal · Cited by 25 · see citing works
Patients, Power and Politics. From Patients to Citizens
(1999) · British Journal of Clinical Governance · doi:10.1108/bjcg.1999.4.3.114.2 · Cited by 23 · see citing works
Is patient choice democratizing Swedish primary care?
Fredriksson, M. (2013) · Health Policy · doi:10.1016/j.healthpol.2012.12.002 · Cited by 22 · see citing works
Self-citationDefining the ‘public’ in a public healthcare system
Contandriopoulos, D., Denis, J., & Langley, A. (2004) · Human Relations · doi:10.1177/0018726704049990 · Cited by 22 · see citing works
Trade-offs and Synergies: Horizontalization and legitimacy in the Swiss wastewater sector
Lieberherr, E. (2015) · Public Management Review · doi:10.1080/14719037.2015.1014397 · Cited by 21 · see citing works
Globalisation, Markets and Healthcare Policy: Redrawing the Patient as a Consumer
Needham, C. E. (2010) · Health & Social Care in the Community · doi:10.1111/j.1365-2524.2010.00945_4.x · Cited by 19 · see citing works
An Introduction to Clinical Governance and Patient Safety
(2010) · Oxford University Press eBooks · doi:10.1093/acprof:oso/9780199558612.001.0001 · Cited by 18 · see citing works
PPI: Understanding the Difference Between Patient and Public Involvement
Warsh, J. (2014) · The American Journal of Bioethics · doi:10.1080/15265161.2014.900144 · Cited by 15 · see citing works
Fighting Sectional Interests in Health Care
Trappenburg, M. J. (2005) · Health Care Analysis · doi:10.1007/s10728-005-6450-z · Cited by 8 · see citing works
Badie, B., Berg‐Schlosser, D., & Morlino, L. (2011) · International Encyclopedia of Political Science · doi:10.4135/9781412959636.n1 · Cited by 7 · see citing works
Christiaens, W., Kohn, L., Léonard, C., et al. (2013) · doi:10.57598/r195c · Cited by 4 · see citing works
Kan rättvisa procedurer stärka förtroendet för prioriteringar
Nedlund, A., & Garpenby, P. (2008) · KTH Publication Database DiVA (KTH Royal Institute of Technology) · Cited by 1 · see citing works
Dowding, K. (2011) · Encyclopedia of Power · doi:10.4135/9781412994088.n191 · Cited by 1 · see citing works
Flagged first, then by citations
Research works printed but not linked: 8
- Boedeltje, M. and Cornips, J. (2004) Input and Output Legitimacy in Interactive Governance. NIG Annual Work Conference 2004 Rotterdam. Available from (27-08-15): http://repub.eur.nl/pub/1750/
- Bovens, M. (2007) Analysing and Assessing Accountability: A Conceptual Framework. European Law Journal, 13(4), pp.447-468.
- Coulter, A. (2013) Engaging patients in healthcare, New York: McGraw Hill Professional.
- Coulter, A., Ellins, J. (2006) Patient-focused interventions. A review of the evidence. The Health Foundation and Picker Institute Europe.
- Crawford, M., Rutter, D., Thelwall, S. (2003) User Involvement in Change Management: A Review of the Literature. Report to the National Co- ordinating Centre for NHS Service Delivery and Organisation R & D (NCCSDO).
- Dowding, K. M. (2011) "Interests" in Encyclopedia of power. Thousand Oaks, Calif: SAGE. Encyclopædia Britannica (2015) "Interest group". Available at: http://www.britannica.com/topic/interest-group.
- Oxford Dictionaries (2015). "Interest". Available at: http://www.oxforddictionaries.com/definition/english/interest. Oxford Dictionaries (2015) "Public". Available at: http://www.oxforddictionaries.com/definition/english/public?q=the +public#public 10.
- Warren, ME., Pearse, H. Cambridge University Press; Cambridge.
Cited by
Sorted by citations
Madden, M., & Speed, E. (2017) · Frontiers in Sociology · doi:10.3389/fsoc.2017.00007 · Cited by 204 · see citing works
Tembo, D., Hickey, G., Montenegro, C., Chandler, D., Nelson, E., Porter, K., Dikomitis, L., Chambers, M., Chimbari, M., Mumba, N., et al. (2021) · BMJ · doi:10.1136/bmj.n178 · Cited by 163 · see citing works
Beyond explainability: justifiability and contestability of algorithmic decision systems
Henin, C., & Le Métayer, D. (2022) · AI & SOCIETY · doi:10.1007/s00146-021-01251-8 · Cited by 71 · see citing works
McKay, F., Williams, B. J., Prestwich, G., Treanor, D., & Hallowell, N. (2022) · Research Involvement and Engagement · doi:10.1186/s40900-022-00357-7 · Cited by 16 · see citing works
- Authors
- Fredriksson, M., & Tritter, J. Q.
- Affiliations
- Uppsala University (SE)
- Aston University (GB)
- Corresponding author
- Fredriksson, Mio
- Venue
- Sociology of Health & Illness
- Publisher
- Wiley
- Published
- 2016-11-11
- Volume
- 39
- Issue
- 1
- Pages
- 95-111
- ISSN
- 0141-9889 (ISSN-L)
- 1467-9566
- OpenAlex
- W2551415221
- Cited by
- 119
- References
- 66
- Citations by year
- 2026: 6 · 2025: 11 · 2024: 10 · 2023: 14 · 2022: 11 · 2021: 20 · 2020: 20 · 2019: 15 · 2018: 8 · 2017: 4
- FWCI
- 16.77
- Type
- journal article
- Language
- en
- Open access
- Locations
- Sociology of Health & Illness (publishedVersion)
- PubMed (publishedVersion)
- Aston Publications Explorer (Aston University) (submittedVersion)
- Topics
- Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
- Health Sciences › Health Professions › General Health Professions › Health Services Management and Policy
- Social Sciences › Political Science and International Relations › Political Theory and Democracy
- Keywords
- patient and public involvement, patient involvement, citizen participation, health care reform, health care consumers, legitimacy, accountability, representativeness, experiential knowledge, Sweden, England
- MeSH terms
- Community Participation, England, Health Policy, Humans, Patients, Policy Making, Public Opinion, Social Responsibility, Sweden
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
