Rappresentatività ed efficacia: due dimensioni critiche della partecipazione nei sistemi sanitari. Una revisione della letteratura

Titolo Rivista SALUTE E SOCIETÀ
Autori/Curatori Mauro Serapioni
Anno di pubblicazione 2022 Fascicolo 2022/1
Lingua Italiano Numero pagine 16 P. 13-28 Dimensione file 210 KB
DOI 10.3280/SES2022-001002
Il DOI è il codice a barre della proprietà intellettuale: per saperne di più clicca qui

Qui sotto puoi vedere in anteprima la prima pagina di questo articolo.

Se questo articolo ti interessa, lo puoi acquistare (e scaricare in formato pdf) seguendo le facili indicazioni per acquistare il download credit. Acquista Download Credits per scaricare questo Articolo in formato PDF

Anteprima articolo

FrancoAngeli è membro della Publishers International Linking Association, Inc (PILA)associazione indipendente e non profit per facilitare (attraverso i servizi tecnologici implementati da CrossRef.org) l’accesso degli studiosi ai contenuti digitali nelle pubblicazioni professionali e scientifiche

Democratic innovations involving citizens in decision-making processes are increasingly widespread and many participation initiatives have been implemented in health systems. How-ever, the degree of institutionalization of participation is still far from being satisfactory, de-spite the many efforts made. Starting from this context, a literature review was carried out with the aim of analyzing two critical areas of participation in health systems: ‘representativeness’ and ‘effectiveness’. Representativeness emerges as a particularly problematic aspect and many studies have observed that descriptive or statistical representation cannot be considered the only form of legitimizing participation. With regard to effectiveness, many articles have high-lighted the lack of studies evaluating the effects of participation in health systems and the urgency of designing solid and reliable evaluation models.

Parole chiave:Partecipazione; Sistemi sanitari; Rappresentatività; Efficacia; Valutazione; Scoping Review.

  1. Beardshaw V. (1991). User representation in the NHS and the future of Community Health Councils. Draft Discussion Paper 1990/1991, King’s Fund Institute, London.
  2. Bezzi C. (2011). Glossario della ricerca valutativa. Testo disponibile al sito: https://bezzicante.files.wordpress.com/2014/05/glossario-6.pdf (27/11/2021).
  3. Bispo Júnior J.P., Gerschman S. (2015). Legitimidade da representação em instâncias de participação social: o caso do Conselho Estadual de Saúde da Bahia, Brasil. Cad. Saúde Pública, 31(1): 183-193. DOI: 10.1590/0102-311X0008621
  4. Blondiaux L., Sintomer Y. (2002). L’impératif délibératif. Politix, 15(57): 17-35.
  5. Bobbio L. (2019). Designing effective public participation. Policy and Society, 38(1): 41-57. DOI: 10.1080/14494035.2018.1511193
  6. Boivin A., L’Espérance A., Gauvin F.P., Dumez V., Macaulay A.C., Lehoux P., Abelson J. (2018). Patient and public engagement in research and health system decision making: A systematic review of evaluation tools. Health Expectations; 21: 1075–1084.
  7. Boivin A., Lehoux P., Burgers J., Grol R. (2014). What Are the Key Ingredients for Effective Public Involvement in Health Care Improvement and Policy Decisions? A Randomized Trial Process Evaluation. The Milbank Quarterly, 92(2): 319-350. DOI: 10.1111/1468-0009.1206
  8. Botes L., Van Rensberg, D. (2000). Community participation in development: nine plagues and twelve commandments. Community Development Journal, 35(1): 41-58.
  9. Bovenkamp H.M., Trappenburg M.J., Grit K.J. (2009). Patient Participation in collective healthcare decision making: the Dutch model. Health Expectation; 13(1): 73-85.
  10. Frankish J. C, Kwan B., Ratner P., Warf Higgins J., Larsen C. (2002). Challenges of citizen participation in regional health authorities. Social Science and Medicine 2002, 54: 1471-80.
  11. Fredriksson M., Tritter J. (2017). Disentangling patient and public involvement in healthcare decisions: why the difference matters. Sociology of Health & Illness, 39(1): 95-111
  12. Fung A. (2015). Putting the Public Back into Governance: The Challenges of Citizen Participation and Its Future. Public Administration Review, 75(4): 513-522.
  13. Fung A., Wright E.O. (2001). Deepening Democracy: Innovations in Empowered Participatory Governance. Politics Society, 29: 5-41.
  14. Giarelli G. (2006). Terzo settore e governance sanitaria comunitaria: tre modelli di partnership a confronto. Salute e società, 1: 68-87.
  15. Giarelli G., Annandale E., Ruzza C. (2014). Introduction: The role of civil society in healthcare systems reforms. Social Science & Medicine, 123: 160-167.
  16. Habermas J. (1992). Further reflections on the Public Sphere. In: Calhoun C., a cura di, Habermas and the Public Sphere. Cambridge: The MIT Press.
  17. Hall A.E., Bryant J., Sanson-Fisher R.W., Fradgley E.A., Proietto A.M., Roos I. (2018). Consumer input into health care: Time for a new active and comprehensive model of consumer involvement. Health Expect., 21: 707–713.
  18. Harrison S., Mort M. (1998). Which Champion, Which People? Public and user involvement in healthcare as a technology of legitimation. Social Policy & Administration, 32(1): 60-70. DOI: 10.1111/1467-9515.0008
  19. Kashefi E., Mort M. (2004). Grounded citizens’ juries: a tool for health activism?, Health Expectations, 7: 290-302.
  20. Kondilis B., Kiriaze I., Athanasoulia A., Falagas M. (2008). Mapping Health Literacy Research in the European Union: A Bibliometric Analysis. PLOS ONE, 3(6): 1-6.
  21. Lander J, Langhof H, Dierks M.L. (2019). Involving patients and the public in medical and health care research studies: An exploratory survey on participant recruiting and representativeness from the perspective of study authors. PLOS ONE, 14(1): e0204187.
  22. Lehoux P., Daudelin G., DemersPayette O., Boivin A. (2009). Fostering deliberations about health innovation: What do we want to know from publics?. Social Science & Medicine, 68: 2002-09.
  23. Li K., Abelson J., Giacomini M., Contandriopoulos D. (2015). Conceptualizing the use of public involvement in health policy decision-making, Social Science & Medicine, 138:14-21.
  24. Lomas J. (1997). Reluctant rationers: public input to health care priorities. Journal of Health Services & Research Policy, 2: 103-11. DOI: 10.1177/13558196970020020
  25. Luchmann L. (2007). A representação no interior das experiências de participação. Lua Nova, 70: 139-70. DOI: 10.1590/S0102-6445200700010000
  26. Martin G. (2008). Representativeness, legitimacy and power in public involvement in health-service management. Social Science & Medicine, 67: 1757-65.
  27. Martin G. (2008). Ordinary people only’: knowledge, representativeness, and the publics of public participation in healthcare. Sociology of Health & Illness, 30(1): 35-54.
  28. Mitton C., Smith N., Peacock S., Evoy B., Abelson J. (2009). Public participation in health care priority setting: A scoping review. Health Policy, 91: 219-228.
  29. Mockford C., Staniszewska S., Griffiths F., Herron-Marx S. (2012). The impact of patient and public involvement on UK NHS health care: a systematic review. Int. J. Qual. Health Care, 24: 28-38.
  30. Montesanti S., Abelson J., Lavis J., Dunn J. (2016). Enabling the participation of marginalized populations: case studies from a health service organization in Ontario, Canada. Health Promot Int, 32(4): 636-649.
  31. Morrison C., Dearden A., (2013). Beyond tokenistic participation: Using representational artefacts to enable meaningful public participation in health service. Health Policy, 112: 179-186.
  32. Parkinson J., (2004). Hearing voices: negotiating representation claims in public deliberation. Br J Polit & Int Relations, 6(3): 370-388.
  33. Pateman C. (1970). Participation and democratic theory. Cambridge: Cambridge University Press.
  34. Pateman C. (2012). Participatory Democracy Revisited. Perspectives on Politics, 10(1): 7-19. DOI: 10.1017/S1537592711004877
  35. Pitkin H.F. (1967). The Concept of Representation. Berkeley: University of California Press.
  36. Pizzo E., Doyle, C., Matthews R. Barlow J. (2014). Patient and Public Involvement: how much we spend and what are the benefit? Health Expectations, 18: 1918-1926.
  37. Rojatz D., Forster R. (2017). Self-help organisations as patient representatives in health care and policy decision-making. Health Policy, 121(1): 1047-1052.
  38. Santos B.S. (2005). Democratizing democracy: beyond the liberal democratic canon. London: Verso.
  39. Serapioni M. (2002). Forme innovative di partecipazione dei cittaseradini alla valutazione di qualità: Citizens’ Juries e Comitati Consultivi Misti. In: Cipolla C., Giarelli G., Altieri L., a cura di, Valutare la qualità in sanità. Approcci, metodologie e strumenti. Milano: FrancoAngeli.
  40. Serapioni M. (2014a). Os Desafios da Participação e da Cidadania nos Sistemas de Saúde. Ciência & Saúde Coletiva, 19(12): 4824–37. DOI: 10.1590/1413-812320141912.0229201
  41. Serapioni M. (2014b). Saúde, participação e abordagens deliberativas. Potencialidades e limites dos júris de cidadãos. Fórum Sociológico, 24: 95-103.
  42. Serapioni M., Romani O. (2006). Potencialidades e desafios da participação em instâncias colegiadas dos sistemas de saúde: os casos de Itália, Inglaterra e Brasil. Cadernos de Saúde Pública, 22(11): 2411-2421. DOI: 10.1590/S0102-311X200600110001
  43. Smith, G., Mattew R. (2014). Defining Mini-public: Making Sense of Existing Conceptions. In: Grönlund K., Bächtiger A., Setälä M., a cura di, Deliberative mini-public. Involving Citizens in the Democratic Process. Colchester: European Consortium for Political Research.
  44. Street J., Duszynski K., Krawczyk S., Braunack-Mayer A. (2014). The use of citizens’ juries in health policy decision-making: a systematic review. Social Science & Medicine, 109: 1-9.
  45. Tambuyzer E., Pieters G., Van Audenhove C. (2014). Patient involvement in mental health care: one size does not fit all. Health Expect, 17(1): 138-50.
  46. Thurston W., MacKean G., Vollman A., Casebber A., Weber M., Malof B., Bader J. (2005). Public participation in regional health policy: a theoretical framework. Health Policy, 73: 237-252.
  47. Timotijevic L., Raats, M.M. (2007). Evaluation of two methods of deliberative participation of older people in food-policy development. Health Policy, 82: 302-319.
  48. Tricco A.C., Lillie E., Zarin W., O’Brien K., Colquhoun H., Kastner M., et al. (2018). A scoping review on the conduct and reporting of scoping reviews. BMC Med Res Methodol, 16:15.
  49. Tritter J. (2009). Revolution or Evolution: The challenges of Conceptualizing Patient and Public Involvement in a Consumerist World. Health Expectations, 12(3): 275-87.
  50. Urbinati N. (2008). The Concept of Representation in Contemporary Democratic Theory. Annu. Rev. Polit. Sci., 11: 387-412.
  51. Wharf Higgins J. (1999). Citizenship and empowerment: a remedy for citizens participation in health reform. Community Development Journal, 31(4): 287-307.
  52. Wright B. (2015). Voices of the Vulnerable: Community health centres and the promise and peril of consumer governance. Public Management Review, 17(1): 57-71. DOI: 10.1080/14719037.2014.881537
  53. Abelson J., Forest P.G., Eyles J., Smith P., Martin E., Gauvin F.P. (2003). Deliberations about deliberative methods: issues in the design and evaluation of public participation process. Social Science and Medicine, 57: 239-251.
  54. Arksey H., O’Malley L. (2005). Scoping Studies: Towards a Methodological Framework. Int, J. Social Research Methodology, 8(1): 19-32. DOI: 10.1080/136455703200011961
  55. Avritzer L. (2011). Introdução. A qualidade da democracia e a questão da efetividade da participação: mapeando o debate. In: Pires R., a cura di, Efetividade das instituições participativas no Brasil: estratégias de avaliação, Brasília: IPEA.
  56. Baggott R., Forster R. (2008). Health consumer and patients’ organizations in Europe: towards a comparative analysis. Health Expectations, 11: 85-94.
  57. Barnes M., Coelho V.S. (2009). Social participation in health in Brazil and England. Health Expect, 12 (3): 226-36.
  58. Barnes M., Newman J., Knops A., Sullivan H. (2003). Constituting “the public” in public participation. Public Admin., 81 (2): 379-399. DOI: 10.1111/1467-9299.0035
  59. Batista R., Moreira M. (2016). Relações entre representação e participação no Conselho Municipal de Saúde de Rio de Janeiro: segmento dos usuários, 2013-2014. Ciências & Saúde Coletiva, 21(5): 1409-20.
  60. Chambers S. (2018). The philosophic origins of deliberative ideals. In: Bächtiger A., Dryzeck J., Mansbridge J., Warren M.E., a cura di, The Oxford Handbook of Deliberative Democracy. Oxford: Ofxord University Press.
  61. Conklin A., Morris Z., Nolte E. (2012). What is the evidence base for public involvement in health-care policy? Results of a systematic scoping review. Health Expectations 18(2): 153-165.
  62. Contandriopoulos D. (2004). Sociological perspective on public participation in health care. Social Science & Medicine, 58: 321-330.
  63. Coulter A. (2013). Engaging Patients in Healthcare. New York: McGraw Hill Professional.
  64. Crawford M.J., Rutter D., Manley C., Weaver T., Bhui K., Fulop N., Tyrer P. (2002). Systematic review of involving patients in the planning and development of health care. British Medical Journal, 325 30 november. -- Testo disponibile in pdf: https://www.bmj.com/content/bmj/325/7375/1263.full.pdf
  65. Crouch C. (1999). La ampliación de la ciudadanía social y económica y la participación. In: García S., Steven, L., a cura di, Ciudadanía, justicia social, identidad y participación. Madrid: Siglo Veintiuno.
  66. De Freitas C., Martin G. (2015). Inclusive public participation in health: Policy, practice and theoretical contributions to promote the involvement of marginalised groups in healthcare. Social Science & Medicine, 135: 31-39.
  67. Elwood P., Longley M. (2010). My Health: Whose responsibility? A jury decides. Journal of Epidemiology and Community Health, 64(9): 761-64.
  68. Entwistle V. (2009). Public involvement in health service governance and development: questions of potential for influence. Health Expectations, 2009, 12: 1-3.
  69. Font J., Blanco I. (2007). Procedural legitimacy and political trust: The case of citizen juries in Spain. European Journal of Political Research, 46: 557-589.

Mauro Serapioni, Rappresentatività ed efficacia: due dimensioni critiche della partecipazione nei sistemi sanitari. Una revisione della letteratura in "SALUTE E SOCIETÀ" 1/2022, pp 13-28, DOI: 10.3280/SES2022-001002