Primary care and patients involvement

Teresa Petrangolini Director of Active citizenship network

17th wonca europe 2011 conference 8 - 11 Sept, Warshaw

Cittadinanzattiva

An Italian citizens organization started in 1978 Defense of citizens rights and the promotion of civic participation in Italy and in Europe Some 90.000 members, voluntaries 30 years of experience

Active Citizenship Network (ACN)

A European network started in 2001 Promotes the participation of citizens organizations in European and national public policies Over 100 partner organizations from 30 European countries

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ACNs mission is twofold:

To contribute to the development of a European Active Citizenship; To promote the participation of citizens organizations in European and national public policies.

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ACN's strategy is to promote the point of view of European citizens in all public policies areas, focusing on healthcare, consumers and corporate social responsibility issues This point of view is always based on civic information, i.e. data collected and analyzed by citizens organizations themselves It is embodied in civic instruments such as: the European Charter of Patients Rights, the European Charter of Active Citizenship, the Guidelines for good CSR partnerships in Europe, etc ACN website and newsletter are two essential networking and advocacy tools. www.activecitizenship.net
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An European Policy on Patients Rights

Health services and thus Patients Rights are normally considered only of national competence based on the principle of sussidiarity
European Court of Justice Ruling: ruled on patient getting treatment in other countries based on right of free movement of people and services (30 and 4950 of the EC Treaty)

Article 35 of the Charter of Fundamental Rights of the EU and guarantee a high level of human health protection
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Need for EU Responsibility

European Council: Convention on Human Rights and Biomedicine and Rec.(2000)5 citizen and patient participation. WHO Declaration on the Promotion of Patients Rights in Europe. EU cross-border healthcare directive (2011) clarifies patients' right to access safe and good quality treatment across the EU border, allowing member state healthcare systems and patients to benefit from it in a number of ways
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European Active Citizenship

Citizens Initiatives:
1.

Draft a European Charter of Patients Rights (2002) Transform Patients Rights into standards for assessing healthcare (2005) Promote, organize and celebrate annually a European Patients Rights Day (from 2007)

2.

3.

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14 Patients Rights
1. 2.

3.
4. 5. 6. 7. 8.

Preventive measures Access to care Information Consent Free choice Privacy and confidentiality Respect of patients time Observance of quality standards

9. 10.

11.
12. 13.

14.

Safety Innovation Avoid unnecessary suffering and pain Personalized treatment Complain Compensation

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3 Active Citizenship Rights

1. To perform general interest activities Duty of the authorities to favour such activity 2. To perform advocacy activities Auditing and verification activities; Prevention of violations; Direct intervention; The right to get a reply; The right to dialogue. 3. To participate in policy making Definition, implementation and evaluation of the healthcare policies 17th wonca europe 2011 conference 8 11 Sept, Warshaw

The EU Charter of Patients Rights A civic Assessment 2011

PRES Patients Rights Euro Scores

17th wonca europe 2011 conference 8 - 11 Sept, Warshaw

An overview of the results

17th wonca europe 2011 conference 8 - 11 Sept, Warshaw

The rights with the lowest scores are same three that resulted worst in the preceding survey:

patients' time free choice access to care

17th wonca europe 2011 conference 8 - 11 Sept, Warshaw

Some alarm bells: information and active citizenship

Both the rights are:
hardly respected (score 54/100)

these bad results are even more serious, since these rights are particularly relevant from a civic perspective and deal with matters of accountability and transparency of institutions
further aggravating consideration: these can be considered as soft rights
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Right to information
common failure by health authorities to provide information regarding consumer satisfaction about clinical performances. In hospitals: patient access to free clinical records: only 4 excellent scarce existence of a free information telephone number insufficient informative contents of websites (mean score 38) what deeply lowers the synthetic PRES index is the high frequency of violations2011 conference 8 by civic denounced 17th wonca europe - 11 Sept, Warshaw organizations

Right to active citizenship

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Strategic relevance of Empowered Users

As already observed in 2007 these results are connected to a crisis of the "European Social Model" insofar as concerns the universal right to health care and the consequential reduction of levels of protection.

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The stake - the protection of the universality of health care systems requires a general effort in order to avoid that illness causes social exclusion, with: adequate resources and guarantees of protection of weak people proper supporting policies.

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Disparity beetween countries

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The development and the training of empowered users must go on, as a contrast with the crisis of the social model, by: promoting active citizenship all over Europe; implementing the right to information; spreading the patient centred care.

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Issues
Primary care as an ideal environment to facilitate the empowerment of citizens: right to information, to free and conscious choice, to informed consent and in general to active citizenship in the policy making process

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Issues
Cost reduction, co-payments, private spending must be compensate by the involvement of patients and the promotion of the European Charter of Patients Rights. No taxation without representation

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Issues
Subsidiarity: local communities can play a role in the promotion of health care and facilitate the humanizatio of treatments. This assumption of responsability must be facilitated by a flow of financial resource: involvement of patients in the treatments and in planning and assessing is a low cost but is not a no cost.

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The involvement of patients and citizens in Health care policies is not a luxury but a necessity!

Thank you very much

t.petrangolini@activecitizenship.net

17th wonca europe 2011 conference 8 - 11 Sept, Warshaw