The GMG (Law Modernizing the German Health Care System) was introduced in 2004. It resulted in considerable changes concerning the possibility for patients to participate in decisions in the German health care system. For the first time representatives of patients in the restructured Federal Joint Committee (G-BA), elected by patients and patient-organizations, were institutionalized by law. In later legislation, this route was further pursued: GKV-WSG and the VAndG of 2007. A previous quantitative study performed by the Institute for Health Economics and Clinical Epidemiology of the University of Cologne in 2006 provided some information on the degree of the involvement of patient representatives in the decision-making process of the G-BA. The present study is an attempt to extend this information by further in-depth interviews. The qualitative interviews of patient representatives in the G-BA unravelled a basic need for improvement of their financial and structural resources. This would lead to consequences in nearly all areas of patient participation--beginning with the quality of the patient representatives' contributions, the role within the G-BA and subsequently their role in public relations. It can be concluded that health politicians can be influenced only gradually in a process of permanent discussions on these issues.
Since 2004 patient advocates have taken part in counseling on the service catalogue in the Federal Joint Committee and since 2005 on quality assurance of hospital care in the Federal Office of Quality Assurance. The current study provides a first overview on the assessment of patient advocates with their contributions and influence on decisions and the satisfaction of their participation in the committees and boards of the self-governing bodies. There is evidence for necessary improvement both in the preparation for the function as a patient advocate as well as in the transparency of the decision-making in the Federal Joint Committee. The influence of patient advocates on decision-making is regarded as minor. The majority of the patient advocates registered for the Federal Office of Quality Assurance regard their participation as having little influence on the results in the expert committees despite the good possibilities of participation, the high acceptance and great satisfaction with the contribution. There is a vast interest for further on-the-job training. One can assume that further political reforms will result in changing the participation of patient advocates in the self-governing bodies. Therefore far reaching and continuous research to follow the further development of processes and results of participation is recommended.
The intervention had no general effect for all pupils. However, it did have a positive effect specifically for pupils with a smoking father. The whole intervention does not seem to be cost-effective. Specific interventions with a focus on endangered groups could be more cost-effective.
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