The Right to Health and Patients‘ Rights:

Population-based AssessmentAnne Brunner1,2, Manfred Wildner1,3

1Bavarian Public Health Research Center2Catholic University Eichstätt

3Ludwig-Maximilians-University Munich

B AYERISCHER F ORSCHUNGSVERBUNDP UBLIC H EALTH – Ö FFENTLICHE G ESUNDHEIT

§I. Nuremberg Code for Physicians (Doctors‘ Trials ar Nuremberg 1946/47)

II. International Human Rights Treaties

1948 Universal Declaration of Human Rights

1950 European Convention on Human Rights and Fundamental Freedoms

1961 European Social Charter

1966 International Covenant on Civil and Political Rights

1966 International Covenant on Economic, Social and Cultural Rights

2000 Charter of Human Rights of the European Union (Nice Treaty)

III.National (Constitutional) Law

The Human Rights Context

Patients‘ Rights and Human Rights

U

D

H

R

PR

ICPCRICESCR

Nuremberg Code

1946/47

Patient Orientation

1991 Patients‘ Charter (GB)

1994 Amsterdam Consultation (WHO)„Declaration on the Promotion of Patients‘ Rights in Europe“

1996 Ljubljana Charta „Reforming Health Care“

1997 Gothenburg Consultation (WHO)

1999 Gesundheitsministerkonferenz Trier „Patientenrechte in Deutschland heute“

Declaration on the Promotion of Patients‘ Rights in Europe

(WHO 1994)

I. Human Rights and values in health care

II. Information

III. Consent

IV. Confidentiality and privacy

V. Care and treatment

VI. Application

Status of patients‘ rights: where is the evidence?

Study Design MSD Sharp & Dohme Research Grant on

Health Targets in Europe 2000

Citizens‘ perspective Household sample (CATI) Four German-speaking cities

Munich, Dresden, Vienna (A), Berne (CH)

Methods Computer assisted telephone interview – 15 minutes

Netto-Response Rate – 43%-60%

Dimensions – Demography (17)– Health Status (SF 12)– Human Rights Status (19)– Patients‘ Rights Status (30)

Response categories– Yes/No– Don‘t know– No answer

Example

Q: My privacy is adequately respected by doctors and other health care providers

A: Agree – don‘t agree – don‘t know

Demography

Munich (127) Dresden (124) Vienna (125) Berne (126) Female 57%-70% Native German tongue 86%-98% Age 25-78 years (mean 49)

Munich

0 ,0 0 %

1 0 ,0 0 %

2 0 ,0 0 %

3 0 ,0 0 %

4 0 ,0 0 %

5 0 ,0 0 %

6 0 ,0 0 %

7 0 ,0 0 %

8 0 ,0 0 %

9 0 ,0 0 %

1 0 0 ,0 0 %

PR1.1PR1.2

PR1.4PR1.5

PR1.6

PR2.1

PR2.2

PR2.4

PR2.5

PR2.6

PR2.7

PR2.8a

PR2.8bPR2.9

PR3.2PR3.9

PR3.10PR4.1

PR4.4

PR4.7

PR5.3

PR5.4

PR5.6

PR5.7a

PR5.7b

PR5.9

PR5.11

PR6.2PR6.3

PR6.5

Munich, men

Munich, women

80% Threshold

Munich: Human rights and values

0 ,0 0 %

1 0 ,0 0 %

2 0 ,0 0 %

3 0 ,0 0 %

4 0 ,0 0 %

5 0 ,0 0 %

6 0 ,0 0 %

7 0 ,0 0 %

8 0 ,0 0 %

9 0 ,0 0 %

1 0 0 ,0 0 %

PR1.1PR1.2

PR1.4PR1.5

PR1.6

PR2.1

PR2.2

PR2.4

PR2.5

PR2.6

PR2.7

PR2.8a

PR2.8bPR2.9

PR3.2PR3.9

PR3.10PR4.1

PR4.4

PR4.7

PR5.3

PR5.4

PR5.6

PR5.7a

PR5.7b

PR5.9

PR5.11

PR6.2PR6.3

PR6.5

Munich, men

Munich, women

80% Threshold

Access to care and prevention

Munich: Information rights

0 ,0 0 %

1 0 ,0 0 %

2 0 ,0 0 %

3 0 ,0 0 %

4 0 ,0 0 %

5 0 ,0 0 %

6 0 ,0 0 %

7 0 ,0 0 %

8 0 ,0 0 %

9 0 ,0 0 %

1 0 0 ,0 0 %

PR1.1PR1.2

PR1.4PR1.5

PR1.6

PR2.1

PR2.2

PR2.4

PR2.5

PR2.6

PR2.7

PR2.8a

PR2.8bPR2.9

PR3.2PR3.9

PR3.10PR4.1

PR4.4

PR4.7

PR5.3

PR5.4

PR5.6

PR5.7a

PR5.7b

PR5.9

PR5.11

PR6.2PR6.3

PR6.5

Munich, men

Munich, women

80% Threshold

Information about health services

Information during

inpatient care

Munich: Consent

0 ,0 0 %

1 0 ,0 0 %

2 0 ,0 0 %

3 0 ,0 0 %

4 0 ,0 0 %

5 0 ,0 0 %

6 0 ,0 0 %

7 0 ,0 0 %

8 0 ,0 0 %

9 0 ,0 0 %

1 0 0 ,0 0 %

PR1.1PR1.2

PR1.4PR1.5

PR1.6

PR2.1

PR2.2

PR2.4

PR2.5

PR2.6

PR2.7

PR2.8a

PR2.8bPR2.9

PR3.2PR3.9

PR3.10PR4.1

PR4.4

PR4.7

PR5.3

PR5.4

PR5.6

PR5.7a

PR5.7b

PR5.9

PR5.11

PR6.2PR6.3

PR6.5

Munich, men

Munich, women

80% Threshold

Munich: Confidentiality and privacy

0 ,0 0 %

1 0 ,0 0 %

2 0 ,0 0 %

3 0 ,0 0 %

4 0 ,0 0 %

5 0 ,0 0 %

6 0 ,0 0 %

7 0 ,0 0 %

8 0 ,0 0 %

9 0 ,0 0 %

1 0 0 ,0 0 %

PR1.1PR1.2

PR1.4PR1.5

PR1.6

PR2.1

PR2.2

PR2.4

PR2.5

PR2.6

PR2.7

PR2.8a

PR2.8bPR2.9

PR3.2PR3.9

PR3.10PR4.1

PR4.4

PR4.7

PR5.3

PR5.4

PR5.6

PR5.7a

PR5.7b

PR5.9

PR5.11

PR6.2PR6.3

PR6.5

Munich, men

Munich, women

80% Threshold

Munich: Care and treatment

0 ,0 0 %

1 0 ,0 0 %

2 0 ,0 0 %

3 0 ,0 0 %

4 0 ,0 0 %

5 0 ,0 0 %

6 0 ,0 0 %

7 0 ,0 0 %

8 0 ,0 0 %

9 0 ,0 0 %

1 0 0 ,0 0 %

PR1.1PR1.2

PR1.4PR1.5

PR1.6

PR2.1

PR2.2

PR2.4

PR2.5

PR2.6

PR2.7

PR2.8a

PR2.8bPR2.9

PR3.2PR3.9

PR3.10PR4.1

PR4.4

PR4.7

PR5.3

PR5.4

PR5.6

PR5.7a

PR5.7b

PR5.9

PR5.11

PR6.2PR6.3

PR6.5

Munich, men

Munich, women

80% Threshold

Humane terminal care

Continuous health care

coordination

Transition between institutions or sectors

Munich: Application

0 ,0 0 %

1 0 ,0 0 %

2 0 ,0 0 %

3 0 ,0 0 %

4 0 ,0 0 %

5 0 ,0 0 %

6 0 ,0 0 %

7 0 ,0 0 %

8 0 ,0 0 %

9 0 ,0 0 %

1 0 0 ,0 0 %

PR1.1PR1.2

PR1.4PR1.5

PR1.6

PR2.1

PR2.2

PR2.4

PR2.5

PR2.6

PR2.7

PR2.8a

PR2.8bPR2.9

PR3.2PR3.9

PR3.10PR4.1

PR4.4

PR4.7

PR5.3

PR5.4

PR5.6

PR5.7a

PR5.7b

PR5.9

PR5.11

PR6.2PR6.3

PR6.5

Munich, men

Munich, women

80% Threshold

Information and advice on the rights as a patient

Successful protest *

Dresden: Human rights and values

0 %

1 0 %

2 0 %

3 0 %

4 0 %

5 0 %

6 0 %

7 0 %

8 0 %

9 0 %

1 0 0 %

PR1.1PR1.2

PR1.4

PR1.5

PR1.6

PR2.1

PR2.2

PR2.4

PR2.5

PR2.6

PR2.7

PR2.8a

PR2.8b

PR2.9PR3.2

PR3.9PR3.10

PR4.1

PR4.4

PR4.7

PR5.3

PR5.4

PR5.6

PR5.7a

PR5.7b

PR5.9

PR5.11

PR6.2

PR6.3PR6.5

Dresden, men

Dresden, women

80% Threshold

Access to care and prevention

Dresden: Information rights

0 %

1 0 %

2 0 %

3 0 %

4 0 %

5 0 %

6 0 %

7 0 %

8 0 %

9 0 %

1 0 0 %

PR1.1PR1.2

PR1.4

PR1.5

PR1.6

PR2.1

PR2.2

PR2.4

PR2.5

PR2.6

PR2.7

PR2.8a

PR2.8b

PR2.9PR3.2

PR3.9PR3.10

PR4.1

PR4.4

PR4.7

PR5.3

PR5.4

PR5.6

PR5.7a

PR5.7b

PR5.9

PR5.11

PR6.2

PR6.3PR6.5

Dresden, men

Dresden, women

80% Threshold

Information about health services

Right not to be informed

Information during

inpatient care

Dresden: Consent

0 %

1 0 %

2 0 %

3 0 %

4 0 %

5 0 %

6 0 %

7 0 %

8 0 %

9 0 %

1 0 0 %

PR1.1PR1.2

PR1.4

PR1.5

PR1.6

PR2.1

PR2.2

PR2.4

PR2.5

PR2.6

PR2.7

PR2.8a

PR2.8b

PR2.9PR3.2

PR3.9PR3.10

PR4.1

PR4.4

PR4.7

PR5.3

PR5.4

PR5.6

PR5.7a

PR5.7b

PR5.9

PR5.11

PR6.2

PR6.3PR6.5

Dresden, men

Dresden, women

80% Threshold

Dresden: Confidentiality and privacy

0 %

1 0 %

2 0 %

3 0 %

4 0 %

5 0 %

6 0 %

7 0 %

8 0 %

9 0 %

1 0 0 %

PR1.1PR1.2

PR1.4

PR1.5

PR1.6

PR2.1

PR2.2

PR2.4

PR2.5

PR2.6

PR2.7

PR2.8a

PR2.8b

PR2.9PR3.2

PR3.9PR3.10

PR4.1

PR4.4

PR4.7

PR5.3

PR5.4

PR5.6

PR5.7a

PR5.7b

PR5.9

PR5.11

PR6.2

PR6.3PR6.5

Dresden, men

Dresden, women

80% Threshold

Access to own medical files

Dresden: Care and treatment

0 %

1 0 %

2 0 %

3 0 %

4 0 %

5 0 %

6 0 %

7 0 %

8 0 %

9 0 %

1 0 0 %

PR1.1PR1.2

PR1.4

PR1.5

PR1.6

PR2.1

PR2.2

PR2.4

PR2.5

PR2.6

PR2.7

PR2.8a

PR2.8b

PR2.9PR3.2

PR3.9PR3.10

PR4.1

PR4.4

PR4.7

PR5.3

PR5.4

PR5.6

PR5.7a

PR5.7b

PR5.9

PR5.11

PR6.2

PR6.3PR6.5

Dresden, men

Dresden, women

80% Threshold

Humane terminal care

Transition between institutions or sectors

Dresden: Application

0 %

1 0 %

2 0 %

3 0 %

4 0 %

5 0 %

6 0 %

7 0 %

8 0 %

9 0 %

1 0 0 %

PR1.1PR1.2

PR1.4

PR1.5

PR1.6

PR2.1

PR2.2

PR2.4

PR2.5

PR2.6

PR2.7

PR2.8a

PR2.8b

PR2.9PR3.2

PR3.9PR3.10

PR4.1

PR4.4

PR4.7

PR5.3

PR5.4

PR5.6

PR5.7a

PR5.7b

PR5.9

PR5.11

PR6.2

PR6.3PR6.5

Dresden, men

Dresden, women

80% Threshold

Information and advice on the rights as a patient

Successful protest *

Vienna: Human rights and values

0 ,0 0 %

1 0 ,0 0 %

2 0 ,0 0 %

3 0 ,0 0 %

4 0 ,0 0 %

5 0 ,0 0 %

6 0 ,0 0 %

7 0 ,0 0 %

8 0 ,0 0 %

9 0 ,0 0 %

1 0 0 ,0 0 %

PR1.1PR1.2

PR1.4

PR1.5

PR1.6

PR2.1

PR2.2

PR2.4

PR2.5

PR2.6

PR2.7

PR2.8a

PR2.8b

PR2.9PR3.2

PR3.9PR3.10

PR4.1

PR4.4

PR4.7

PR5.3

PR5.4

PR5.6

PR5.7a

PR5.7b

PR5.9

PR5.11

PR6.2

PR6.3PR6.5

Vienna, men

Vienna, women

80% Threshold

0 ,0 0 %

1 0 ,0 0 %

2 0 ,0 0 %

3 0 ,0 0 %

4 0 ,0 0 %

5 0 ,0 0 %

6 0 ,0 0 %

7 0 ,0 0 %

8 0 ,0 0 %

9 0 ,0 0 %

1 0 0 ,0 0 %

PR1.1PR1.2

PR1.4

PR1.5

PR1.6

PR2.1

PR2.2

PR2.4

PR2.5

PR2.6

PR2.7

PR2.8a

PR2.8b

PR2.9PR3.2

PR3.9PR3.10

PR4.1

PR4.4

PR4.7

PR5.3

PR5.4

PR5.6

PR5.7a

PR5.7b

PR5.9

PR5.11

PR6.2

PR6.3PR6.5

Vienna, men

Vienna, women

80% Threshold

Vienna: Information rightsInformation about health

services

Right not to be informed

Information during

inpatient care

0 ,0 0 %

1 0 ,0 0 %

2 0 ,0 0 %

3 0 ,0 0 %

4 0 ,0 0 %

5 0 ,0 0 %

6 0 ,0 0 %

7 0 ,0 0 %

8 0 ,0 0 %

9 0 ,0 0 %

1 0 0 ,0 0 %

PR1.1PR1.2

PR1.4

PR1.5

PR1.6

PR2.1

PR2.2

PR2.4

PR2.5

PR2.6

PR2.7

PR2.8a

PR2.8b

PR2.9PR3.2

PR3.9PR3.10

PR4.1

PR4.4

PR4.7

PR5.3

PR5.4

PR5.6

PR5.7a

PR5.7b

PR5.9

PR5.11

PR6.2

PR6.3PR6.5

Vienna, men

Vienna, women

80% Threshold

Vienna: Consent

0 ,0 0 %

1 0 ,0 0 %

2 0 ,0 0 %

3 0 ,0 0 %

4 0 ,0 0 %

5 0 ,0 0 %

6 0 ,0 0 %

7 0 ,0 0 %

8 0 ,0 0 %

9 0 ,0 0 %

1 0 0 ,0 0 %

PR1.1PR1.2

PR1.4

PR1.5

PR1.6

PR2.1

PR2.2

PR2.4

PR2.5

PR2.6

PR2.7

PR2.8a

PR2.8b

PR2.9PR3.2

PR3.9PR3.10

PR4.1

PR4.4

PR4.7

PR5.3

PR5.4

PR5.6

PR5.7a

PR5.7b

PR5.9

PR5.11

PR6.2

PR6.3PR6.5

Vienna, men

Vienna, women

80% Threshold

Vienna: Confidentiality and privacy

Access to own medical files

0 ,0 0 %

1 0 ,0 0 %

2 0 ,0 0 %

3 0 ,0 0 %

4 0 ,0 0 %

5 0 ,0 0 %

6 0 ,0 0 %

7 0 ,0 0 %

8 0 ,0 0 %

9 0 ,0 0 %

1 0 0 ,0 0 %

PR1.1PR1.2

PR1.4

PR1.5

PR1.6

PR2.1

PR2.2

PR2.4

PR2.5

PR2.6

PR2.7

PR2.8a

PR2.8b

PR2.9PR3.2

PR3.9PR3.10

PR4.1

PR4.4

PR4.7

PR5.3

PR5.4

PR5.6

PR5.7a

PR5.7b

PR5.9

PR5.11

PR6.2

PR6.3PR6.5

Vienna, men

Vienna, women

80% Threshold

Vienna: Care and treatmentHumane terminal care

Transition between institutions or sectors

0 ,0 0 %

1 0 ,0 0 %

2 0 ,0 0 %

3 0 ,0 0 %

4 0 ,0 0 %

5 0 ,0 0 %

6 0 ,0 0 %

7 0 ,0 0 %

8 0 ,0 0 %

9 0 ,0 0 %

1 0 0 ,0 0 %

PR1.1PR1.2

PR1.4

PR1.5

PR1.6

PR2.1

PR2.2

PR2.4

PR2.5

PR2.6

PR2.7

PR2.8a

PR2.8b

PR2.9PR3.2

PR3.9PR3.10

PR4.1

PR4.4

PR4.7

PR5.3

PR5.4

PR5.6

PR5.7a

PR5.7b

PR5.9

PR5.11

PR6.2

PR6.3PR6.5

Vienna, men

Vienna, women

80% Threshold

Vienna: ApplicationInformation and advice on the

rights as a patient

Successful protest *

Berne: Human rights and values

0 ,0 0 %

1 0 ,0 0 %

2 0 ,0 0 %

3 0 ,0 0 %

4 0 ,0 0 %

5 0 ,0 0 %

6 0 ,0 0 %

7 0 ,0 0 %

8 0 ,0 0 %

9 0 ,0 0 %

1 0 0 ,0 0 %

PR1.1PR1.2

PR1.4

PR1.5

PR1.6

PR2.1

PR2.2

PR2.4

PR2.5

PR2.6

PR2.7

PR2.8a

PR2.8b

PR2.9PR3.2

PR3.9PR3.10

PR4.1

PR4.4

PR4.7

PR5.3

PR5.4

PR5.6

PR5.7a

PR5.7b

PR5.9

PR5.11

PR6.2

PR6.3PR6.5

Bern, men

Bern, women

80% Threshold

0 ,0 0 %

1 0 ,0 0 %

2 0 ,0 0 %

3 0 ,0 0 %

4 0 ,0 0 %

5 0 ,0 0 %

6 0 ,0 0 %

7 0 ,0 0 %

8 0 ,0 0 %

9 0 ,0 0 %

1 0 0 ,0 0 %

PR1.1PR1.2

PR1.4

PR1.5

PR1.6

PR2.1

PR2.2

PR2.4

PR2.5

PR2.6

PR2.7

PR2.8a

PR2.8b

PR2.9PR3.2

PR3.9PR3.10

PR4.1

PR4.4

PR4.7

PR5.3

PR5.4

PR5.6

PR5.7a

PR5.7b

PR5.9

PR5.11

PR6.2

PR6.3PR6.5

Bern, men

Bern, women

80% Threshold

Berne: Information rights

Information during

inpatient care

Right not to be informed

0 ,0 0 %

1 0 ,0 0 %

2 0 ,0 0 %

3 0 ,0 0 %

4 0 ,0 0 %

5 0 ,0 0 %

6 0 ,0 0 %

7 0 ,0 0 %

8 0 ,0 0 %

9 0 ,0 0 %

1 0 0 ,0 0 %

PR1.1PR1.2

PR1.4

PR1.5

PR1.6

PR2.1

PR2.2

PR2.4

PR2.5

PR2.6

PR2.7

PR2.8a

PR2.8b

PR2.9PR3.2

PR3.9PR3.10

PR4.1

PR4.4

PR4.7

PR5.3

PR5.4

PR5.6

PR5.7a

PR5.7b

PR5.9

PR5.11

PR6.2

PR6.3PR6.5

Bern, men

Bern, women

80% Threshold

Berne: Consent

0 ,0 0 %

1 0 ,0 0 %

2 0 ,0 0 %

3 0 ,0 0 %

4 0 ,0 0 %

5 0 ,0 0 %

6 0 ,0 0 %

7 0 ,0 0 %

8 0 ,0 0 %

9 0 ,0 0 %

1 0 0 ,0 0 %

PR1.1PR1.2

PR1.4

PR1.5

PR1.6

PR2.1

PR2.2

PR2.4

PR2.5

PR2.6

PR2.7

PR2.8a

PR2.8b

PR2.9PR3.2

PR3.9PR3.10

PR4.1

PR4.4

PR4.7

PR5.3

PR5.4

PR5.6

PR5.7a

PR5.7b

PR5.9

PR5.11

PR6.2

PR6.3PR6.5

Bern, men

Bern, women

80% Threshold

Berne: Confidentiality and privacy

0 ,0 0 %

1 0 ,0 0 %

2 0 ,0 0 %

3 0 ,0 0 %

4 0 ,0 0 %

5 0 ,0 0 %

6 0 ,0 0 %

7 0 ,0 0 %

8 0 ,0 0 %

9 0 ,0 0 %

1 0 0 ,0 0 %

PR1.1PR1.2

PR1.4

PR1.5

PR1.6

PR2.1

PR2.2

PR2.4

PR2.5

PR2.6

PR2.7

PR2.8a

PR2.8b

PR2.9PR3.2

PR3.9PR3.10

PR4.1

PR4.4

PR4.7

PR5.3

PR5.4

PR5.6

PR5.7a

PR5.7b

PR5.9

PR5.11

PR6.2

PR6.3PR6.5

Bern, men

Bern, women

80% Threshold

Berne: Care and treatmentHumane terminal care

0 ,0 0 %

1 0 ,0 0 %

2 0 ,0 0 %

3 0 ,0 0 %

4 0 ,0 0 %

5 0 ,0 0 %

6 0 ,0 0 %

7 0 ,0 0 %

8 0 ,0 0 %

9 0 ,0 0 %

1 0 0 ,0 0 %

PR1.1PR1.2

PR1.4

PR1.5

PR1.6

PR2.1

PR2.2

PR2.4

PR2.5

PR2.6

PR2.7

PR2.8a

PR2.8b

PR2.9PR3.2

PR3.9PR3.10

PR4.1

PR4.4

PR4.7

PR5.3

PR5.4

PR5.6

PR5.7a

PR5.7b

PR5.9

PR5.11

PR6.2

PR6.3PR6.5

Bern, men

Bern, women

80% Threshold

Berne: Application

Diagnosis: High fulfillment

Dignity Humanity Confidentiality Autonomy Free choice Contact to family and friends

Diagnosis: Low fulfillment

Information rights (various) Hospital/sectoral transition Humane terminal care

Perspective

Research, monitoring and evaluation of patients‘

rights fulfillment