The EU Charter of Patients’ Rights

A civic Assessment

PRES
Patients’ Rights Euro Scores
11st April 2011
Rosapaola Metastasio - Cittadinanzattiva
 ..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
An overview of the results
 The “NOT RESPECTED” Rights..
The rights with the lowest scores are same
three that resulted worst in the preceding
survey:

- patients' time
- free choice
- access to care
 Right to respect of patients’ time

In sum, problems of:

• transparency
• organizational issues
• wait times
Right to respect of patients’ time
 Right to respect of patients’ time
Actual conditions of hospital patients 57/100
Worrying 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
 Right to respect of patients’ time
Alerts 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 only the elemental
issues concerning time,
but also the serious consequences that citizens suffer
because of delays in treatment or diagnosis.
 Right to free choice
A peculiar assessment: based only on violations detected by civic organizations

Violation of the right to free choice

Countries with violations

regularly found
2
5
2
Countries with violations
frequently found

Countries with violations rarely

found

11 Countries with violations

occasionally found /
never found
 Right to free choice
Violations 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
 Right to free choice
• 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 determinate hospitals 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 access
For 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
 Right to access - to care
Violation of the right to access concerning:
Discrimination on the basis of financial resources
Place of residence
Kind of illness
Countries with violations regularly
found
3 4
Countries with violations frequently
found

Countries with violations rarely

found
5

8 Countries with violations

occasionally found /
never found
 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”.
 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)
• 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 of violations denounced by civic organizations.
Right to active citizenship
 Right to active citizenship

Unacceptable scores in hospitals:

• Periodic consultations of citizens’ organizations

• Common initiatives done in partnership

regarding quality
 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 of
pharmaceutical 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
 A BASIC VOCABULARY OF PATIENTS’ RIGHTS
This assessment work didn’t produce only scores.
During the carrying out of the process, we have
discovered something else, “collateral” results:
citizens and civic organizations are often not enough
informed about:
• which their rights exactly are
• how to demand them
If citizens do not know their rights, they cannot stand
for them and, above all, exercise them.
 This problem of awareness of one’s own
rights has proved that
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.

First step - agreeing on the meaning of terms and

concepts for overcoming terminological difficulties

Second step – strengthening active citizenship:

mutual support among citizens’ organizations
Final goal:
These steps constitute a process, through
which
making patients’ rights easily demandable.
demandable
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
second step – there is a strong need of working for
a common and shared awareness of one’s own
rights:
some civic organizations have difficulties in playing
the role of claiming citizens’ rights: they need more
information, and thus more capacity of training
citizens in the local communities.
Aim: strengthening active citizenship through
mutual support among citizens’ organizations
Keywords for this step: information, training,
exchanging best practices.
 Thanks for your
“patient” attention!