The participation of citizens/patients in the health care systems

Author: Mauro Serapioni
Submitted: Thursday 3rd of November 2011 09:25:07 AM
Submitted by: egf
Language: English
Content type: Learning resource
Educational levels: expert, qc2, qc3


Issues of public involvement and governance have assumed a great relevance within western democracies. In recent years social impulses for more participation initiative from civil society have increased. This debate, which has been very intense among social scientists since the 1980s, is actively present within the healthcare system. In fact, one of the central aspects of health reforms in the last twenty years has been the growing importance granted to citizens' voice and perspective. Many scholars have pointed out that the incorporation of patient knowledge and experience improves the quality of decisions. Empowering patients and users is also an important strategy toward bridging the growing democratic gap in health systems. The World Health Organization has repeatedly supported this strategy, emphasizing and promoting the participation of users in all documents published in recent years (WHO, 1990; WHO, 1997 WHO, 2006). Partnership, participation and empowerment are some of the most appealing key words in the texts of reform in many western countries. However, experience in this field shows that despite some good intentions and appreciable efforts, public involvement is unlikely to be fully implemented. In this session the state of citizens’ participation in western health systems will be presented, as result of a literature review, highlighting both new strategies of patient involvement and critical issues and constraints. In relation to the critical aspects that emerged from our review, we will provide a detailed analysis of the representativeness deficit, the influence of participatory action on decision-makers and the lack of interest in evaluating the effectiveness of participation. In closing, some reflection on the complexity of the relation between the health care system and user associations will be presented for discussion. Bibliography Abelson J. et al. (2003a). Deliberations about deliberative methods: issues in the design and evaluation of public participation process, Social Science and Medicine, 57:239-251. Baggott R. and Forster R. (2008). Health consumer and patient’ organizations in Europe: towards a comparative analysis, Health Expactations, 11, pp.85-94. Bovenkamp HM and Trappenburg MJ (2009). Patient participation in coleective healthcare decision making: the Dutch model, Health Expactions, 13, pp. 73-85. Burton P. (2009). Conceptual, Theoretical and Practical Issues in Measuring the Benefits of Public Participation, Evaluation, Vol. 15, N. 3: 263-284. Contandriopoulos D. (2004). A sociological perspective on public participation in health care, Social Science & Medicine, 58:321-330. Frankish C.J. et al. (2002). Challenges of citizen participation in regional health authorities, Social Science and Medicine, 54: 1471-1480. 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. Rowe G. and Frewer L.J. (2004). Evaluating Public-Participation Exercises: A research Agenda, Science, Technology and Human Value, Vol. 29, N. 4, 512-557. Scutchfield F.D., Hall L. and Ireson C.L. (2006). The public and public health organizations: Issues for community engagement in public health, Health Policy, 77: 76-85. Serapioni M. and Romaní 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, Vol. 22, N. 11. pp. 2411-2421. Tritter J.Q. and McCallun A. (2006). The snakes and ladders of user involvement: moving beyond Arnestein, Health Policy, 76: 156-158.


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Original version - English

abstract Mauro_Serapioni_2_20110902_5171.pdf

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Mauro Serapioni. The participation of citizens/patients in the health care systems. EUROGENE portal. November 2011. online:



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