The advocacy activity of the
Italian Tribunal for patient’s
rights
Teresa Petrangolini
National secretary
Gastein, 27 september 2001
the informed citizen: a new partner in
the political health arena?
1
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
the informed citizen: a new partner in
the political health arena?
2
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.”
the informed citizen: a new partner in
the political health arena?
3
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
the informed citizen: a new partner in
the political health arena?
4
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
the informed citizen: a new partner in
the political health arena?
5
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.”
the informed citizen: a new partner in
the political health arena?
6
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
the informed citizen: a new partner in
the political health arena?
7
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
the informed citizen: a new partner in
the political health arena?
8
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
the informed citizen: a new partner in
the political health arena?
9
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)
the informed citizen: a new partner in
the political health arena?
10
Case study - Italy
The experience of Cittadinanzattiva/ The
Tribunal for Patient’s Rights
the informed citizen: a new partner in
the political health arena?
11
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.”
the informed citizen: a new partner in
the political health arena?
12
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)
the informed citizen: a new partner in
the political health arena?
13
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
the informed citizen: a new partner in
the political health arena?
14
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
the informed citizen: a new partner in
the political health arena?
15
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
the informed citizen: a new partner in
the political health arena?
16
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
the informed citizen: a new partner in
the political health arena?
17
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
the informed citizen: a new partner in
the political health arena?
18
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
the informed citizen: a new partner in
the political health arena?
19
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?
the informed citizen: a new partner in
the political health arena?
20
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?
the informed citizen: a new partner in
the political health arena?
21