Congress report - European Health Forum Gastein

Forum V: The informed patient / citizen: a new partner
in the political health arena
Methods
A survey questionnaire was constructed using standard questions on demographics (age, sex,
occupation, marital status, insurance status, hospital stays, German as mother tongue),
health status (SF-12), a previously developed and validated Human Rights questionnaire (HR-
Questionnaire) and questions derived from the WHO document Declaration on the Promotion
of Patients’ Rights (PR-Questionnaire). 30 of the 49 articles were reformulated as statements
for the interview, so that respondents could express their agreement with their content. The
wording was kept as close as possible to the original wording of the document. For example,
article 5.6 of the document was reformulated as „I can choose and change my own physician
or other health care provider and health care establishment“.
The questionnaire was worded in German. In order to maximize comparability of study
regions and to avoid language bias four German speaking cities were selected: Munich in
former West Germany, Dresden in former East Germany, Vienna in Austria and Bern in
Switzerland. A simple random sample of telephone numbers were drawn from available
telephone directories on CD-ROM. Interviewed household members were selected with the
nearest birthday method to enhance representativity. Only persons between 25 and 78 years
of age were included. A total of 502 interviews were conducted from February 15th to March
8th, 2000. The response rate was between 43% (Dresden) and 60% (Vienna), which is a
normal response for telephone interviews.
Statistical analysis was descriptive and based on the proportion of respondents who agreed
with the statement out of all interviewed persons. A distinction was made between „I don’t
know“ and „no answer given“. About half of all rights had a fulfilment below 80% in German
study regions. Hence special focus is given to fulfilment below about 80%. This threshold of
80% fulfilment was set to define potential for improvement. It must be noted that low
fulfilment consists of both low agreement and high uncertainty („don’t know“). Results were
analysed after direct standardization for the New European Standard Population. The regional
differentiation was kept and results were reported separately for men and women. No
statistical hypotheses were tested.
Results
In Munich (West Germany), areas with relative potential for improvement were found for
access to health care and prevention, information about health services, information about
one’s own health status, the right not to be informed and the right to have someone else
informed about one’s health condition (men only), information about health care providers
and rules and routines on hospital admission, written summary on hospital discharge,
continuity of care and especially coordination of care after discharge out of the hospital,
humane terminal care, ability to seek legal redress and access to information on patients’
rights.
In Dresden (East Germany), areas with relative potential for improvement were found for
access to health care and prevention, information about health services (men only),
information about own health status, the right not to be informed, the right to have
someone else informed (men only), information about health care providers and rules and
routines on hospital admission, written summary on hospital discharge, the right of access
to one’s own medical files (men only), continuity of care (men only) and especially
coordination of care after discharge out of the hospital, humane terminal care, ability to seek
legal redress and access to information on patients’ rights. In general, patterns of perceived
patients’ rights were similar to those seen in former West Germany.
In Vienna (Austria), areas with relative potential for improvement were found for information
about health services, the right not to be informed, the right to have someone else
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