Health systems and citizen participation: some critical reflections on the perspective of the sociology of health
DOI:
https://doi.org/10.25758/set.644Keywords:
Public participation, Health systems, Deliberative approaches, Representativeness, Public participation assessment, Sociology of healthAbstract
The past ten to fifteen years have seen a rise in the number of initiatives of civil society participation intended to exert pressure toward the reformulation of social rights. These are no longer viewed as the rights to access services designed and administered by the State (according to Marshall's concept of citizenship), but as citizens’ demand for an active role in defining public policy and services. This debate, which has been very intense among social scientists since the 1980s, is actively present within the healthcare system. Several studies have been highlighting a strong tension between the technicism of medicine and the bureaucratic organization of the health system, on one side, and the communication model of the life word, on the other side. In fact, one of the central issues of health care reforms of the last 20 years has focused on the valorization of the citizens' experience and voice. The paper begins with brief sketches of new sociological approaches aimed at linking social systems with the real world - micro with macro dimensions; structure with action. Then, the actual state of the art of citizens’ participation in western health systems is presented, as a result of a literature review, highlighting both new strategies of patient involvement and critical issues and constraints. In closing, some reflections on the complexity of the relationship between the health care system and patient and user associations are presented for discussion.
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References
Wood B. Patient power? The politics of patients associations in Britain and America. Buckinghamshire: Open University Press; 2000. ISBN 9780335203673
Brown P, Zavestosky S. Social movements in health. Oxford: Wiley/Blackwell; 2005. ISBN 9781405124492
Landzelius K. Introduction: patient organization movements and new metamorphoses in patienthood. Soc Sci Med. 2006;62(3):529-37.
Nunes JA, Matias M Filipe AM. Patient organizations as emerging actors in the health arena: the case of Portugal. RECIIS. 2007;1(1):105-8.
Santos BS. Para um novo senso comum: a ciência, o direito e a política na transição paradigmática (Vol. 4). Porto: Edições Afrontamento; 2006. ISBN 9789723608465
Cooper L, Coote A, Davies A, Jackson C. Voices off: tackling the democratic deficit in health. London: Institute for Public Policy Research; 1995. ISBN 9781860300028
Rowe G, Frewer, LJ. Public participation methods: a framework for evaluation. Sci Technol Hum Value. 2000;25(1):3-29.
Crawford MJ, Rutter D, Manley C, Weaver T, Bhui K, Fulop N, et al. Systematic review of involving patients in the planning and development of health care. BMJ. 2002;325(7375):1263-5.
Menéndez EL. Estructura social y estructura de significado: el punto de vista del actor. Antropologia Medica: rev Soc Ital Antropol Med. 1996;(1-2):111-40. Spanish
Knorr-Cetina K, Cicourel A. Advances in social theory and methodology: toward an integration of micro-and macro-sociologies. Boston: Routledge; 1982. ISBN 9780710009463
Collins R. On the microfundations of macrosociology. Am J Sociol. 1981;86(5):984-1014.
Alexander JC, Giesen B, Munch R, Smelser NJ. The micro-macro link. Berkeley: University of California Press; 1987. ISBN 9780520060685
Giesen B. Dal conflitto al legame: un abbozzo sistematico del dibattito micro-macro. Sociol Ricerca Soc. 1994;(43):13-33. Italian
Ardigò A. Società e salute: lineamenti di sociologia sanitaria. Milano: F. Angeli Editore; 1997. ISBN 9788846403087
Archer MS. La morfogenesi della società: una teoria sociale realista. Milano: F. Angeli Editore; 1997. ISBN 9788846401328
Alexander J, Giesen B. From reduction to linkage: the long view of the micro-macro debate. In Alexander JC, Giesen B, Munch R, Smelser NJ, editors. The micro-macro link. Berkeley: University of California Press; 1987. p. 1-42. ISBN 9780520060685
Giesen B. Beyond reductionism: four models relating micro and macro levels. In Alexander JC, Giesen B, Munch R, Smelser NJ, editors. The micro-macro link. Berkeley: University of California Press; 1987. p. 337-55. ISBN 9780520060685
Collins R. Teorie sociologiche. Bolonha: Il Mulino; 1992. ISBN 9788815110428
Bushby H. Alternative medicine/alternative knowledge: putting flesh on the bones (using traditional chinese approaches to healing)”. In Cant S, Sharma U, editors. Complementary and alternative medicines: knowledge in practice. London: Free Association Books; 1996. p. 135-50. ISBN 9781853433528
Zakus JD, Lysack CL. Revisiting community participation. Health Policy Plan. 1998;13(1):1-12.
Arksey H, O’Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005;8(1):19-32.
Rhodes P, Nocon A. User involvement and the NHS reforms. Health Expect. 1998;1(2):73-81.
Barnes M, Skelcher C, Beirens H, Dalziei R, Jeffares S, Wilson L. Designing citizen-centred governance. Birmingham: Joseph Rowntree Foundation; 2008. ISBN 9781859356487
Van de Bovenkamp HM, Trappenburg MJ, Grit KJ. Patient participation in collective healthcare decision making: the Dutch model. Health Expect. 2010;13(1):73-85.
Scutchfield FD, Hall L, Ireson CL. The public and public health organizations: issues for community engagement in public health. Health Policy. 2006;77(1):76-85.
Frankish CJ, Kwan B, Ratner PA, Higgins JW, Larsen C. Challenges of citizen participation in regional health authorities. Soc Sci Med. 2002;54(10):1471-80.
Tritter JQ, McCallum A. The snakes and ladders of user involvement: moving beyond Arnstein. Health Policy. 2006;76(2):156-68.
Kondilis BK, Kiriaze IJ, Athanasoulia AP, Falagas ME. Mapping health literacy research in the European Union: a bibliometric analysis. PLoS ONE. 2008;3(6):e2519.
Rifkin SB. Paradigms lost: toward a new understanding of community participation in health programmes. Acta Trop. 1996;61(2):79-92.
Crouch C. La ampliación de la ciudadanía social y económica y la participación. In García S, Lukes S, editors. Ciudadanía: justicia social, identidad y participación. Madrid: Siglo XXI de España; 2009. p. 257-85. ISBN 9788432309878
Webster A. Health technology assessment: a sociological commentary on reflexive innovation. Int J Technol Assess Health Care. 2004;20(1):61-6.
Avery B. Who does the work of public health? Am J Public Health. 2002;92(4):570-5.
Ugalde A. Ideological dimension of community participation in Latin American health programs. Soc Sci Med. 1985;21(1):41-53.
Organización Panamericana de la Salud. Desarrollo y fortalecimiento de los sistemas locales de salud: la participación social. Washinghton, D.C.: OPS; 1990.
Chambers S. Deliberative democratic theory. Annu Rev Polit Sci. 2003;6:307-26.
Elster J. Deliberative democracy. Cambridge: Cambridge University Press; 1998. ISBN 9780521596961
Fishkin JS. The voice of the people: public opinion and democracy. New Haven: Yale University Press; 1997. ISBN 9780300072556
Habermas J. Teoria dell’agire comunicativo: I. Razionalità nell’azione e razionalizzazione sociale; II. Critica della ragione funzionalistica. Bolonha: Il Mulino; 1997.
Abelson J, Eyles J, McLeod CB, Collins P, McMullan C, Forest PG. Does deliberation make a difference? Results from a citizens panel study of health goals priority setting. Health Policy. 2003;66(1):95-106.
Mitton C, Smith N, Peacock S, Evoy B, Abelson J. Public participation in health care priority setting: a scoping review. Health Policy. 2009;91(3):219-28.
Delli Carpini MX, Cook FL, Jacobs LR. Public deliberation, discursive participation, and citizen engagement: a review of the empirical literature. Annu Rev Polit Sci. 2004;7:315-44.
Serapioni M. Forme innovative di partecipazione dei cittadini alla valutazione di qualità: citizens' juries e comitati consultivi misti. In Cipolla C, Girelli G, Altieri L, editors. Valutare la qualità in sanita: approcci, metodologie e strumenti. Milano: Angeli Editore; 2002. p. 217-51. ISBN 9788846434258
Church J, Saunders D, Wanke M, Pong R, Spooner C, Dorgan M. Citizen participation in health decision-making: past experience and future prospects. J Public Health Policy. 2002;23(1):12-32.
Abelson J, Forest PG, Eyles J, Smith P, Martin E, Gauvin FP. Deliberations about deliberative methods: issues in the design and evaluation of public participation process. Soc Sci Med. 2003;57(1):239-51.
Thurston WE, MacKean G, Vollman A, Casebeer A, Weber M, Maloff B, et al. Public participation in regional health policy: a theoretical framework. Health Policy. 2005;73(3):237-52.
Lehoux P, Daudelin G, Demers-Payette O, Boivin A. Fostering deliberations about health innovation: what do we want to know from publics? Soc Sci Med. 2009;68(11):2002-9.
Serapioni M, Romani O. Potencialidades e desafios da participação em instâncias colegiadas dos sistemas de saúde: os casos de Itália, Inglaterra e Brasil [Strengths and challenges of citizens' participation in local health councils: the cases of Italy, England, and Brazil]. Cad Saúde Pública. 2006;22(11):2411-21. Portuguese
Grisotti M, Patrício ZM, Silva A. A participação de usuários, trabalhadores e conselheiros de saúde: um estudo qualitativo [The participation of users, workers and counselors of health: a qualitative study]. Cien Saude Colet. 2010;15(3):831-40. Portuguese
Escorel S, Moreira MR. Desafios da participação social em saúde na nova agenda da reforma sanitária: democracia deliberativa e efectividade. In Fleury S, Lobato LV, editors. Participação democracia e saúde. Rio de Janeiro: CEBES; 2009. p. 229-47. ISBN 978858842208
Contandriopoulos D. La participation publique: définitions, défis et usages. Santé, Societé et Solidarité. 2009;8(2):27-32. French
Baggott R, Forster R. Health consumer and patient’ organizations in Europe: towards a comparative analysis. Health Expect. 2008;11(1):85-94.
Higgins JW. Closer to home: the case for experiential participation in health reform. Can J Public Health. 1999;90(1):30-4.
Abbott S, Meyer J, Lanceley A. Patient advice and liaison Services: strengthening the voices of individual service service users in health-care organizations. Health Expect. 2006;9(2):138-47.
WHO-Europe. Ninth future forum on health system governance and public participation. Copenhagen: World Health Organization; 2006. ISBN 9289021896
Timotijevic L, Raats MM. Evaluation of two methods of deliberative participation of older people in food-policy development. Health Policy. 2007;82(3):302-19.
Martin GP. Representativeness, legitimacy and power in public involvement in health-service management. Soc Sci Med. 2008;67(11):1757-65.
Entwistle VA. Public involvement in health service governance and development: questions of potential for influence. Health Expect. 2009;12(1):1-3.
Milewa T, Valentine J, Calnan M. Managerialism and active citizenship in Britain’s reformed health service: power and community in an era of decentralisation. Soc Sci Med. 1998;47(4):507-17.
Fung A, Wright EO. Deepening democracy: innovations in empowered participatory governance. Polit Soc. 2001;29(1):5-41.
Burton P. Conceptual, theoretical and practical issues in measuring the benefits of public participation. Evaluation. 2009;15(3):263-84.
Halvorsen KE. Assessing the effects of public participation. Public Adm Rev. 2003;63(5):535-43.
Rowe G, Marsh R, Frewer LJ. Evaluation of a deliberative conference. Sci Technol Hum Value. 2004;29(1):88-121.
Guston DH. Evaluating the first U.S. consensus conference: the impact of the citizens’ panel on telecommunications and the future of democracy. Sci Technol Hum Value. 1999;24(4):451-82.
Wandersman A. Four keys to success (theory, implementation, evaluation and resource/system support): high hopes and challenges in participation. Am J Community Psychol. 2009;43(1-2):3-21.
Calnan M. Citizens’ views on health care. J Manag Med. 1995;9(4):17-23.
Gagliardi AR, Lemieux-Charles L, Brown AD, Sullivan T, Goel V. Barriers to patient involvement in health service planning and evaluation: an exploratory study. Patient Educ Couns. 2008;70(2):234-41.
Contandriopoulos D. A sociological perspective on public participation in health care. Soc Sci Med. 2004;58(2):321-30.
Coulter A. Paternalism or partnership? Patients have grown up-and there's no going back. BMJ. 1999;319(7212):719-20.
Litva A, Coast J, Donovan J, Eyles J, Shepherd M, Tacchi J, et al. The public is too subjective: public involvement at different levels of health-care decision making. Soc Sci Med. 2002;54(12):1825-37.
Guadagnoli E, Ward P. Patient participation in decision-making. Soc Sci Med. 1998;47(3):329-39.
Robinson M. Democracy, participation and public policy. In Robinson M, White G, editors. The democratic development state: political and institutional design. Oxford: Oxford University Press; 1999. p. 150-86. ISBN 9780198293828
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