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8/7/2019 Main results of European Patients' rights monitoring / 5th Patients' rights day
1/25
8/7/2019 Main results of European Patients' rights monitoring / 5th Patients' rights day
2/25
The EU Charter of Patients Rights
A civic Assessment
PRES
Patients Rights Euro Scores
11st April 2011
Rosapaola Metastasio - Cittadinanzattiva
8/7/2019 Main results of European Patients' rights monitoring / 5th Patients' rights day
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..About this presentation:
1) AN OVERVIEW OF THE RIGHTS
focus on the least respected rights
for each right, focus on the weakest indicators
2) COLLATERAL RESULTS
8/7/2019 Main results of European Patients' rights monitoring / 5th Patients' rights day
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An overview of the results
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The rights with the lowest scores are same
three that resulted worst in the precedingsurvey:
- patients' time- free choice
- access to care
The NOT RESPECTED Rights..
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Right to respect ofpatients time
In sum, problems of:
transparency
organizational issues
wait times
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Right to respect ofpatients time
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Right to respect ofpatients timeActual conditions of hospital patients 57/100Worrying indicators:
publicly-available lists of admittance for elective surgery:
hospitals of only 3 countries at least good
publicly-available wait times for in-patients and out-patients:
only 6 countries scored excellent
Other bad elements: a unified contact point for appointments
Interrupted bookings for appointments
wait times for Hip prosthesis and Non-emerg. Head TC Scan
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Right to respect ofpatients timeAlerts from civic organizations - violations concerning:
illness worsened because of a delay in treatment;
illness worsened because of a delay in diagnosis (due
to waiting times);
excessively long waiting times for specific exams
Frequent or regular violations in 19 countries
These indicators emphasize not onlythe elementalissues concerning time,
but also the serious consequences that citizens suffer
because of delays in treatment or diagnosis.
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Right to free choice
Violation of the right to free choice
5
11
2
2
Countries with violations
regularly found
Countries with violations
frequently found
Countries with violations rarely
found
Countries with violations
occasionally found /
never found
A peculiar assessment:based only on violations detected by civic organ izations
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Right to free choiceViolations concerning:
Incentives to seek treatment in certain hospitals or
centres
Coverage of supplementary insurance for only
some hospitals
Difference in fees between public and private
hospitals
Need to get authorization for some treatments
Indigent patients that may only be treated in
certain hospitals
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free choice recognized in principle in all of the
countries
often actually limited by: organizational
procedure; insurance companies; other factors
according to 60% of the civic organizations,
administrative authorities and insurers tend to
provide incentives for access to determinatehospitals and centres
In sum, what emerges is a choice that is not
in fact very free and that is burdened with many
obstacles
Right to free choice
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Right to accessFor a correct evaluation of the right to access, it is
necessary to distinguish between:
physical access to hospitals (transportation,parking, absence of barriers, etc.):
ALMOST RESPECTED (the best score)
access to care: the most proper meaning,
concerning the access to the needed health care
and treatments: NOT RESPECTED
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Right to access - to careViolation of the right to access concerning:
Discrimination on the basis of financial resources
Place of residence
Kind of illness
4
8
5
3
Countries with violations regularly
found
Countries with violations frequently
found
Countries with violations rarely
found
Countries with violations
occasionally found /
never found
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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 ofaccountability and transparency of institutions
further aggravating consideration: these can be
considered as soft rights.
Some alarm bells:information and active citizenship
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ight 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)
indicated areas for voluntary and public interest associations:
only in 7 countries H attained an assessment at least good
what deeply lowers the synthetic PRES index is the high
frequency ofviolations denounced by civic organizations.
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ight to active citizenship
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Unacceptable scores in hospitals:
Periodic consultations of citizens organizations
Common initiatives done in partnershipregarding quality
ight to active citizenship
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Some worrying indicators (mean score < 35)RIGHT TO OBSERVANCE OF QUALITY STANDARDS: List on quality ranking of health services
RIGHT TO SAFETY:
Legal protection for people who report an adverse event
Supplementary communication systems for emergency exits (H)
RIGHT TO AVOID UNNECESSARY SUFFERING AND PAIN:
Gov. study on national norms concerning the use ofpharmaceutical narcotics
RIGHT TO PERSONALIZED TREATMENT:
Cultural mediator service available in the hospital or on call
RIGHT TO CONSENT:
Specific consent form for appendectomy proper contents
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This assessment work didnt produce only scores.
During the carrying out of the process, we have
discoveredsomething else, collateral results:
citizens and civic organizations are often not enough
informed about:
which their rights exactly are
how to demand them
Ifcitizensdonotknowtheirrights,theycannotstandfor
themand,aboveall,exercise them.
A BASIC VOCABULARY OF PATIENTS RIGHTS
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there is a big preliminary work to carry out,
for monitoring the respect of patients rights.This commitment can be synthetized in:
building a basic vocabulary of patients rights.
This problem ofawareness of ones ownrights has proved that
First step - agreeing on the meaning of terms andconcepts for overcoming terminological difficulties
Second step strengthening active citizenship:
mutual support among citizens organizations
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Final goal:
These steps constitute a process, through
which
making patients rights easily demandabledemandable.
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first step - it is necessary to agree on the
meaning of terms and concepts, from a civic
point of view.
It allows to make the rights concrete even in spite
of very different contexts.
Aim: clarifying the problems that obstruct the real
possibility of demanding rights.
Focus on:
Clinical record
Informed consent
Active citizenship
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second step there is a strong need of working fora common and shared awareness of ones own
rights:
some civic organizations have difficulties in playingthe role of claiming citizens rights: they need more
information, and thus more capacity of training
citizens in the local communities.
Aim: strengthening active citizenship throughmutual support among citizens organizations
Keywords for this step: information, training,
exchanging best practices.
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Thanks for your
patient attention!