Congress report - European Health Forum Gastein

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186 European Health Forum Gastein 2001 ethics are beneficience, nonmaleficience, distributive justice and patient autonomy. Patient autonomy is also an essential principle of patient advocacy with its meanings of free action, effective deliberation, authenticity and moral reflection. Free action focuses on health rights such as the right to decide on one’s treatment options, effective deliberation on the rationality of the decision making process in view of information levels and cognitive ability. Authenticity requires consistency of a choice with personal preferences and life plans while moral reflection makes reference to consistency with beliefs and values. Patients' rights as health rights can be linked to the human rights legislation. Health rights can also be found in the new rights charter of the European Union (http://www.europarl.eu.int/charter/). Protection of human dignity, and health protection and health promotion have been discussed recently with an explicit reference to rights. This approach reflects a comprehensive understanding of health promotion as expressed for instance by the Ottawa Charta. There are voices in favor and against elaborating patients' rights further. The legitimate representation of patients' interests has been claimed by several groups: consumer organizations, patients' self-help groups, self-made patients' representations, sickness funds, political organizations and medical professional organizations. Not surprisingly these different organizations are motivated by different interests: citizens' empowerment, consumer rights, market transparency and fair market competition, costcutting by informing consumers or lobbying professional interests. Correspondingly a confusing number of labels can be found: consumer, customer, user, client, citizen, insured, patient. The traditional label "patient" reflects a special situation of the sick individual: An extraordinary situation which is characterized by illness, functional impairment or disability and increased vulnerability. Impairment ranges from a limited rationality due to pain and anxiety over somatic and cognitive functional deficits to a complete loss of consciousness. The patient-doctor relationship in this context is characterized by a special need of the sick individual to be protected and is best describe as a trust relationship. The European Office of the World Health Organization (WHO) has issued in 1996 a Declaration on the Promotion of Patients’ Rights in Europe as a common European framework for action following the Amsterdam Consultation on Patients’ Rights. This document contains specific sections concerning human rights and values in health care, information, consent, confidentiality and privacy, care and treatment and their application. Patients’ Rights and citizens’ views were endorsed by the Ljubljana Charter on Reforming Health Care of 1996. It is evident that patients’ rights will play an increasingly important role in medical practice in the 21st century. Causes are manifold. The need for the development of patients’ rights emanates from a new role informed patients want to play, from scientific, ethical and moral concern and the human rights movement in health care, including experience with (mis)managed care. Much conceptual and legal work has been done in the context of patients’ rights and their advocacy. However, in the at times competitive efforts towards a legitimate patients' representation the view of the key agents, i.e. the past, present or future patients, hardly ever has been assessed in empirically. Empirical evidence however is essential for the rationale setting of health targets to guide health policy. As this is an obvious deficit in the current discussion over patients' rights, our study aimed at a systematic, populationrepresentative assessment of the perceived fulfilment of patients' rights from a patient perspective as detailed by the Amsterdam Declaration on the Promotion of Patients’ Rights in Europe. 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
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 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 187
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Organiser: International Forum Gast
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The International Forum Gastein gra
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Co-organisers Sponsors
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8 European Health Forum Gastein 200
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12 Preface David Byrne European Hea
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16 Günther Leiner European Health
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Inserat A1
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34 Investing in Better Health in Wa
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74 Luigi Bertinato European Health
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84 Key Issues There are a number of
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104 Identifying EEA Doctors and Nur
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106 Figure 3: Nurses registered wit
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Page 136 and 137: 136 European Health Forum Gastein 2
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238 Main features of this database:
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242 DRAFT GUIDELINES ON QUALITY CRI
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244 Petra Wilson Statement not avai
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Inserat DaMe
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276 Final Programme 2001 Programme
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278 Friday, September 28th , 2001 0
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280 Forum II: Globalisation, World
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308 Ms. Regina Sauto Information an
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