1. the informed citizen: a new partner in the political health arena? 1 The advocacy activity of the Italian Tribunal for patient’s rights Teresa Petrangolini National secretary Gastein, 27 september 2001

2. the informed citizen: a new partner in the political health arena? 2 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

3. the informed citizen: a new partner in the political health arena? 3 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.”

4. the informed citizen: a new partner in the political health arena? 4 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

5. the informed citizen: a new partner in the political health arena? 5 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

6. the informed citizen: a new partner in the political health arena? 6 Active citizens in public policies The 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.”

7. the informed citizen: a new partner in the political health arena? 7 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

8. the informed citizen: a new partner in the political health arena? 8 What active citizens are doing Results 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

9. the informed citizen: a new partner in the political health arena? 9 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

10. the informed citizen: a new partner in the political health arena? 10 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)

11. the informed citizen: a new partner in the political health arena? 11 Case study - Italy The experience of Cittadinanzattiva/ The Tribunal for Patient’s Rights

12. the informed citizen: a new partner in the political health arena? 12 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.”

13. the informed citizen: a new partner in the political health arena? 13 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)

14. the informed citizen: a new partner in the political health arena? 14 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

15. the informed citizen: a new partner in the political health arena? 15 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

16. the informed citizen: a new partner in the political health arena? 16 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

17. the informed citizen: a new partner in the political health arena? 17 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

18. the informed citizen: a new partner in the political health arena? 18 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

19. the informed citizen: a new partner in the political health arena? 19 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

20. the informed citizen: a new partner in the political health arena? 20 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?

21. the informed citizen: a new partner in the political health arena? 21 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?