Congress report - European Health Forum Gastein

Forum V: The informed patient / citizen: a new partner
in the political health arena
International Forum Gastein, Tauernplatz 1, A-5630 Bad Hofgastein
Tel.: +43 (6432) 7110-70, Fax: Ext. 71, e-mail: info@ehfg.org, website: www.ehfg.org
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• Wildner M, Kerim-Sade C, Fischer R, Meyer N, Brunner-Wildner A. Regionale und
geschlechtsspezifische Unterschiede in der Erfüllung von Patientenrechten:
Ergebnisse einer repräsentativen Bevölkerungsumfrage in München, Dresden, Wien
und Bern. Soz Präventivmed 2001;46: 248-258.
Abstract
Patients’ rights as part of a human rights framework are of considerable importance for
future medical and public health practice. So far little empirical evidence has been provided
on the status of patients’ rights and especially not from the citizens’ perspective. The
European Office of the World Health Organization formulated the Amsterdam Declaration in
1994, demanding thereby the realization of the principles of a humane health care. These
principles relate to the protection of dignity of personhood, to self-determination, the right of
information and the right of quality, continuity and equality in health care. Goal of our study
was a population-based assessment of the perceived fulfilment of these rights.
Computer-assisted telephone interviews were conducted during the months February and
March 2000 in four German speaking European cities (Munich, Dresden, Vienna and Berne).
The questionnaire was derived from the framework of the WHO-sponsored Amsterdam
consultation. 125 persons randomly drawn were interviewed in each city (total 500
interviews). A paragraph of the Declaration on the Promotion of Patients’ Rights was
regarded as fulfilled if there was at least 80% agreement.
High grades of fulfilment were found for respect, self-determination, humanity of treatment,
free choice of care providers, confidentiality and issues of consent. Some problematic areas
of fulfilment of patients’ rights were found consistently across all four regions: patients‘
information rights, inpatient/outpatient transfers and humane terminal care. Deficiencies were
most pronounced for the provision of community and domiciliary services after hospital
treatment and for the right concerning humane terminal care and dying in dignity. Moreover,
regional differences were found between Munich, Dresden and Vienna on one side and Berne
on the other side, with degrees of fulfilment being higher in Berne. These regional
differences are more pronounced than gender-specific differences.
Although in general fulfilment of patients’ rights was high, problem areas could be identified.
This provides an evidence base for further research, targeted action and monitoring of
patients’ rights within complex and technologically advanced health care. We conclude that a
health rights framework contributes to a patient-centred assessment of health care systems.
Key Points
• Patients’ rights are of increasing importance for medical care in the “era of the
patient”. The legitimate representation of the patients’ view is a controversial issue
between stakeholders in health care. Population surveys on the patients’
perspective hence were conducted in four cities in Germany, Austria and
Switzerland.
• This empirical evidence suggests high degrees of fulfilment in areas like dignity,
respect and equal access in these regions.
• Low degrees of fulfilment were found for information rights, continuation of care at
the inpatient/outpatient interface and humane terminal care.
• Further research may target different regions or specific diseases, health care
settings or population subgroups
Patients' rights have advanced to a topic of high priority in health politics. The discussion on
patient's rights is being led in many countries and at the European level. It has been claimed
that the "era of the patient" has begun. Founding principles of contemporary health care