The informed citizen: a new partner in the political health arena? 1 The advocacy activity of the...

the informed citizen: a new partner in the political health arena?

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The advocacy activity of the Italian Tribunal for patient’s

rights

Teresa PetrangoliniNational secretary

Gastein, 27 september 2001


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The traditional vision of citizenship

• “Citizenship is the belonging to a national identity, which is realised through a set of rights and duties that rule the relationship between the state and individuals or social groups.”

• Voting• Centrality of the state


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The new vision of citizenship

• “Citizenship is the exercise of citizens’ powers and responsibilities in the arena of public policies and in the context of governance.”


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Comparison of the two concepts

Traditional citizenship

• Rights and duties

• In civil society-state relations

• In the government context

• Electoral participation

New citizenship• Powers and

responsibilities• In public policies

• In the governance context

• Civic participation


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Active citizens in public policies The Traditional Vision

• No institutional or political definition• “Demands from citizen –Answers from the state”• Only pushing, protest, claim, without any

constructive aim or capacity• Problem making and not a problem solving

activity• No citizen self power but dependence on the

powers of others (market, the state)• “Temporary role” in front of the financial crisis of

welfare systems


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Active citizens in public policiesThe New Vision

• “Active citizenship is the capacity of citizens

to self-organize in a multiplicity of forms,

to mobilise resources, to exercise powers for the protection

of rights, and to achieve caring for and developing

of common goods.”


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What active citizens are doing Powers

• Producing information and interpretations

• Changing the frames of perception and consciousness

• Promoting the consistency of institutions with their mission

• Changing the material conditions

• Promoting partnerships and collaborations


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What active citizens are doingResults

• New laws• Mobilization of human & technical

resources• Changes in the behaviour of social and

collective actors• Modifications in mass culture and common

sense• Modifications in political agendas, styles

and language• Modification in market rules and

functioning


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European support

Maastricht and Amsterdam Treaties (EU)

Ljubljana Charter on health care (WHO) Charter of fundamental rights (EU) Recommendation adopted by the

Council of Europe on the development of structures for citizen and patient participation in the decision –making process affecting health care


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Council of Europe

• “… patient empowerment and citizen participation can be achieved only if basic patient’s rights are implemented and …, in this turn, patient participation is a tool for the full implementation of these rights in daily practice.” (Rec 2000/5)


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Case study - Italy

The experience of Cittadinanzattiva/ The Tribunal for Patient’s Rights


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Identity and mission

“Cittadinanzattiva is a civic Movement that was established in 1978 and whose members - individuals, groups and networks - share a commitment to ensure that the general public affirm and play an active role in governing society.”


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The organisation

• A non-profit consumer organization• Based on democracy : 180 local Assemblies of active citizenship, 20

regional Congresses, a national Congress 53.000 members• Voluntary work (mostly)• Public funding, private funding, donations and

contributions from the general public• Budget: 200 turnover of the national Headquarters

( 2.5 millions Euro)


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Networks

• The Tribunal for the Rights of the Patients• Coalition for Chronically Ill Associations• The Citizens’ Advocates• Justice for Rights network• The School of Active Citizenship• A network of employees applying good

practices in public services and public administration

• Corporate citizenship network


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Tribunal for the rights of the patients

• To protect the health and welfare rights of citizens

• To help achieve a more human and functional health service

• Ordinary citizens, workers from the sector, professionals (voluntary basis)

• 10.000 citizens actively engaged


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Main programs

• Pit salute: daily service of information, advice and intervention in the protection of rights

• Chronically Ill associations coalition: 100 association for patients suffering chronic diseases

• Safe Hospital campaign

• Good practices in health sector

• Project to reduce waiting lists

• Safety and quality in medical practices

• Training courses for citizens empowerment


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Main programs

• Campaign on “informed consensus”

• Campaign on pain therapy

• Campaign to sponsor generic drugs

• Campaign on oncology

• Compensation for damages through the transfusions of infected blood

• Experimental implementation of a network for Pit services at the local level


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Operational procedures for rights protection

• Charter of rights• Structures designed to

listen• Auditoring quality of

services• Symbolic actions• Negotiations and

agreements• Alliances and

partnership

• Implementation of the protection tools, provided by the law

• Legal action• Conflict management• Planning new services• Civic use of the

internet• Training• lobbying


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Some results(y. 2000-2001)

• A policy of good practices

• Risk management units in 20 pilot hosp.

• A network of civic safety auditors

• New law on pain therapy

• Generic drugs introduction

• Zero costing of some new drugs

• Investements in radiotherapy and mental health services

• The suing for damages in criminal proceedings regarding malpractices


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Close remarks

• How to reduce the gap between the two visions?

• Can civic partecipation help the Health systems to overcome its current crisis?

• How to introduce civic participation into the decision making process?

• How to create an enabling enviroment for the development of civic organisations?


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Close remarks

• The need for a charter of rights for balancing out market mechanisms and for a new definition of equity, effectiveness and efficiency at European level?

• Participation as a tool to reduce the lack of consensus on health services?

• Are health organisations able to accept the challenge of civic empowerment?

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