Primary care and patients involvement

8/4/2019 Primary care and patients involvement

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

Primary care andpatients involvement

Teresa Petrangolini

Director of Active citizenship

network


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

Cittadinanzattiva An Italian citizens

organization started in1978

Defense of citizensrights and thepromotion of civicparticipation in Italyand in Europe

Some 90.000members, voluntaries

30 years of experience

Active CitizenshipNetwork (ACN)

A European networkstarted in 2001

Promotes theparticipation ofcitizens organizationsin European andnational public policies

Over 100 partnerorganizations from 30European 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 ofEuropean citizens in all public policies areas, focusingon healthcare, consumers and corporate socialresponsibility issues

This point of view is always based on civicinformation, i.e. data collected and analyzed bycitizens organizations themselves

It is embodied in civic instruments such as: theEuropean Charter of Patients Rights, the European

Charter of Active Citizenship, the Guidelines for goodCSR partnerships in Europe, etc

ACN website and newsletter are two essentialnetworking and advocacy tools.www.activecitizenship.net


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An European Policy on Patients Rights

Health services and thus Patients Rights are normallyconsidered only of national competence based on the

principle of sussidiarity

European Court of Justice Ruling: ruled on patientgetting treatment in other countries based on right offree movement of people and services (30 and 4950

of the EC Treaty)

Article 35 of the Charter of Fundamental Rights of theEU and guarantee a high level of human healthprotection


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Need for EU Responsibility

European Council: Convention on Human Rights andBiomedicine and Rec.(2000)5 citizen and patientparticipation.

WHO Declaration on the Promotion of Patients Rightsin Europe.

EU cross-border healthcare directive (2011) clarifiespatients' right to access safe and good qualitytreatment across the EU border, allowing memberstate healthcare systems and patients to benefit from itin a number of ways


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European Active Citizenship

Citizens Initiatives:

1. Draft a European Charter of Patients Rights (2002)

2. Transform Patients Rights into standards for assessinghealthcare (2005)

3. Promote, organize and celebrate annually a EuropeanPatients Rights Day (from 2007)


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14 Patients Rights

1. Preventive measures2. Access to care3. Information4. Consent5. Free choice6. Privacy and

confidentiality7. Respect of patients

time8. Observance of quality

standards

9. Safety10. Innovation11. Avoid unnecessary

suffering and pain12. Personalized treatment13. Complain14. Compensation


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3 Active Citizenship Rights1. 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;

Directintervention;

The right to get a reply; The right to dialogue.

3. To participate in policy making

Definition, implementation and evaluation ofthe healthcare policies


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The EU Charter of Patients Rights Acivic Assessment2011

PRES Patients Rights EuroScores


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An overview of the results



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The rights with the lowest scores are samethree that resulted worst in the precedingsurvey:

patients' time

free choice

access to care



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Some alarm bells: information and

active citizenship

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

these bad results are even more serious, sincethese rights are particularly relevant from a civicperspective and deal with matters of accountability

and transparency of institutions

further aggravating consideration: these can beconsidered as soft rights



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Right to information

common failure by health authorities to provideinformation regarding consumer satisfaction aboutclinical performances.

In hospitals:patient access to free clinical records: only 4 excellentscarce existence of a free information telephone

numberinsufficient informative contents of websites (meanscore 38) what deeply lowers the synthetic PRES index is thehigh frequency of violations denounced by civicorganizations 17th wonca europe 2011 conference 8- 11 Sept, Warshaw


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Right to active citizenship


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Strategic relevance of EmpoweredUsers

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



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The stake - the protection of the universality of healthcare systems requires a general effort in order toavoid that illness causes social exclusion, with:

adequate resources and guarantees of protection ofweak peopleproper 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 theempowerment of citizens: right to information, to free

and conscious choice, to informed consent and ingeneralto 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 thepromotion 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 ofresponsability must be facilitated by a flow of financialresource: involvement of patients in the treatmentsand in planning and assessing is a low cost but is nota no cost.



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

Thank you very much

[email protected]

17th wonca europe 2011 conference 8- 11 Sept Warshaw

Primary care and patients involvement

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