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Background: Approximately 4 million patients with a rare disease live in Germany. The medical care of these patients is problematic because of the rarity and heterogeneity of different clinical pictures. The Federal Ministry of Health has therefore published a research report on "Measures to improve the health situation of people with rare diseases in Germany" in 2009., Objective: The aim of this paper is to present the main recommendations of this research report and relate it to current developments in the field of medical care for people with rare diseases., Methodology: The care situation of patients with rare diseases was determined using questionnaires, expert interviews and focus group discussions with representatives of patients, service providers and stakeholders from the health institutions., Results: The main range of actions that have been identified in the research report were centre and network formation, specialized forms of medical care, diagnosis and treatment, information and experience exchange, performance fees and reimbursement of the costs, guidelines and patient pathways, the research, the implementation of a National Action Alliance and the development of a National Action Plan., Discussion: In March 2010 a National Action League for People with Rare Diseases (NAMSE) was founded. The NAMSE created a national plan of action for people with rare diseases for improving medical care in the field of rare diseases which was approved by the Federal Government in August 2013. Thus, two important areas of the research report have already been implemented. In a comparison of the areas of activity of the research report with those of the National Action Plan it becomes clear that priorities will be in the context of health services research in rare diseases, for example the introduction of centres of reference for rare diseases, measures to accelerate the diagnostic process and the promotion of research and information management in the future.

For decades, economic evaluation studies, or cost-benefit analyses (CBA), have been a tool for decision support in the use of public funds. Despite this, in the last few years, debates on the inclusion of CBAs in the German health care system have paid little attention to the findings and practical experiences of scientific research. CBAs - especially the QALY - were instead represented a priori as "unfair" and "discriminatory." Today they have virtually no meaning when it comes to allocation and pricing decisions about publicly funded health services. Of course, CBAs are based on value judgments, which have to be communicated. They can lead to allocations that violate the minimum standards of justice. Here, distributive requirements and criteria are needed and must be developed in an interdisciplinary discourse. However, a general waiver of CBA does not make decisions about the allocation of resources easier, especially since its involvement can contribute to more openness and transparency in the system. Accordingly, for Germany a dual approach is recommended: an interdisciplinary exploration of the methodological foundations of economic evaluation and a consistent application of these in healthcare decision-making.

In recent years, claims data analyses have become of increasing importance in several scientific disciplines in Germany. In specific research projects, it can be necessary to refine and to standardize the results by socioeconomic data. Information about graduation, social status, and occupation are provided by the German job role code for all people insured by statutory health insurance. During recent years, the working scheme has changed and new professions have appeared. Therefore, there has been a discussion about actualization and modification of the job role code. Since December 2011, an actualized job role code with an extensive set of new information is available. In addition, a new classification of professions is available in Germany which was considered in the design of the new job role code. The aim of this overview is to describe the structure of the new job role code as well as to discuss possible uses and limitations.

Background and Purpose: In accordance with guidelines subcutaneous allergen-specific immunotherapy (SCIT) should be continued for at least 3 consecutive years, which makes compliance to an issue of special importance. Measuring this compliance poses a methodological challenge. The aim of this study is to analyze persistence (reuptake of SCIT in the following years) and frequency (mean number of prescriptions) with the help of secondary data., Methods: The sample, which was taken from a regional prescription database, includes all members of the German statutory health insurance, who received at least one prescription of selected allergen extracts between January 1, 2003 and June 30, 2006. In addition to persistence, average prescriptions for each year of therapy were used to compare long-term SCIT and short-term SCIT. Based on mean number of prescriptions per year, it was examined whether persistence is higher in short-term than in long-term SCIT., Results: Mean number of prescriptions is significantly different in the 1st (2nd; 3rd) year of therapy: 1.50 (1.31; 1.28) prescriptions for long-term SCIT, 1.30 (1.42; 1.42) prescriptions for short-term SCIT, and 1.10 (1.12; 1.14) prescriptions for a shortened therapy regimen with an adjuvant-supported allergoid. As presented, persistence is decreasing. Altogether 45% of SCIT patients continue therapy in the 2nd year. In the 3rd year of therapy, there are only 24% of patients remaining. Persistence rates to a certain degree seem to be dependent on the application form., Conclusion: The analysis of this secondary dataset has found that nonpersistence may jeopardize the therapy according to guidelines to a greater extent than expected from the literature. Except for one allergen extract the differentiation between long-term and short-term SCIT seems diffuse. Packages for consecutive treatment are used not only in long-term SCIT, but also in short-term SCIT regimens, if they are available. The analysis provides first hints that a shorter therapy regimen supports persistence of SCIT during the 2nd and 3rd year of therapy.

Purpose: Main objective of this study is to assess and evaluate resource use in outpatient treatment of cystic fibrosis (CF) in Germany and to compare this with current reimbursement., Methods: Outpatient treatment was evaluated in seven different CF centers.Clinical patient data, resource use, and time consumption were recorded in 2006. A micro-costing approach was used to price resource use data., Results: Mean costs of 488 Euros per patient (n = 326) and quarter occurred. Remuneration (252 Euros per patient/quarter) covered only 52% of the total costs. Furthermore, a considerable time and financial burden for patients as well as decreasing quality of life with increasing age were found. Costs for medication came to 21,604 Euros per patient/year., Conclusion: Human resources in German CF centers today already are below the requirements set by the European consensus for standards of CF care. It will be crucial in assuring a high level of patient care to reach a cost-covering reimbursement scheme in Germany.

Aim: To gather information about current structures in rheumatologic ambulatory health care in Germany. Based on the results recommendations on future structures will be evaluated., Methods: Data collection and statistical analysis via a structured 10-page questionnaire answered by members of the German Association of Rheumatologists. Questions in this second part of the study related to two topics: economic factors and a subjective assessment of the health care structures by the participants., Results: Data from 197 ambulatory rheumatologists who participated in health care could be included in the analyses. Extensive and detailed data on economic issues surrounding ambulatory patient treatment and practice management from the perspective of ambulatory rheumatologists are presented (e.g., revenue, income, income differences between regions or practice size). In addition, perceptions of participating rheumatologists on future perspectives of patient treatment, health policy, and their own economical survival are reported., Conclusions: As in other specialties there is a significant difference not only between the eastern and western regions in Germany but also between the north and the south looking at e.g., revenue, income, with rheumatologists in the east treating significantly more patients. Reasons for those differences are not only related to regional remuneration schemes or the number of patients with a private but statutory health insurance, but are also driven by the number of different services provided (e.g., own laboratory). Physicians perceptions towards their own future in rheumatology are generally positive. Scepticism was reported for the individual economic survival in ambulatory treatment and future changes in health policy.

Aim: To gather information on current organizational structures in rheumatologic ambulatory health care in Germany. Based on the results recommendations on future structures will be discussed., Methods: This study involved data collection and statistical analysis via a structured 10-page questionnaire among the members of the German Association of Rheumatologists. The questions concerned a variety of topics including information on office structures, patient structure, structure of services offered, co-operation with colleagues and hospitals, quality assurance measures, economic factors, and a subjective assessment of the health care structures in rheumatology by the participants., Results: Data obtained from 197 rheumatologists who participate in health care were analyzed. In this paper results concerning the organizational as well as the medical ambulatory health care structure will be presented. Data on economic factors will be presented in part 2 of this study., Conclusions: The organization of ambulatory treatment regarding processes and treatment differences between office-based physicians and rheumatologic outpatient departments in hospitals was very homogeneous. However, physicians in the eastern regions treated significantly more patients compared with the western parts of Germany. This difference was also observed between the north and south. Differences in patient groups (e.g. underlying diseases) were reported between different sub-groups of rheumatologists (e.g. internal specialists vs. GP vs. orthopedic rheumatologists). Integrated health care, as promoted by German social law, did not play a major role. Overall there was a high level of self-initiated training of physicians and participation in education of patients and other physicians.

Many patients with HIV--a group in urgent need of effective health care measures--are extremely worried by current discussions on budgeting, fearing, as daily practice shows, restrictions on vitally indicated services. The present article describes the results of a recent health economics study of the direct and indirect costs generated by HIV infection.

In this paper empirical evidence for substitution processes caused by the budget for drugs prescribed by office-based physicians is provided. Due to substitution processes in a natural experiment the number of referrals and hospital admissions increased significantly after the introduction of a drug budget in Germany. This leads to additional direct and indirect cost for the health care system.

This paper briefly describes the German health care system and the role of economic studies in medical technologies and drugs in a decentralized health care system like Germany's. It also provides a number of examples of studies which have been conducted recently in Germany and shows the variation of sponsors, study types, study perspectives and objectives of those studies. It concludes with an outlook on the future role of pharmaco-economic studies in Germany and the recently published German recommendations for conducting those studies.

Evaluation of Cost-Effectiveness in Health Care considers the background, methodology and potential political influence of economic evaluation (EE) in health care, the following conclusions can be drawn: EE is not just about cost cutting--it considers both costs and outcomes. EE needs to be integrated with decision-making procedures at different levels, namely the macro (policy) level, the meso (management) level, and the micro (clinical) level. EE needs to be seen as a part of a broader effort in health technology assessment and in relation to parallel efforts, e.g. guidelines development, quality assurance, evidence-based medicine. EE needs to be methodologically sound, but is not always possible to undertake the perfect study due to constraints of resources, time, information availability. Ways of setting priorities for EE need to be developed; this means selecting relevant topics and researchable questions. EE needs to be locally relevant; this means taking into account the variations of setting--within and between countries--and differences between trials (efficacy) and regular practice (community effectiveness). Factors that either encourage or inhibit the adoption of study results, i.e. adequate dissemination, professional support, financial incentives or political will, have to be considered.

Germany is known for its comprehensive health care coverage by sickness funds and private health insurers and its successful cost containment policy. The stabilization of health care expenditures as a percentage of GNP was enforced by five cost containment laws since 1977. The last one became effective in 1993 and the next ones are planned for 1996 and 2000. The 1993 law has initiated drastic changes of the system. Office based physicians will be paid by a mixture of capitation, fee-for-service and fees for combined service packages. The hospital financing will be transformed from the current per diem remuneration to a payment system where per diems are combined with payments based on diagnostic related groups and patient management categories. Up till now many restrictions exist for insurees to switch sickness funds. These limitations were removed by the 1993 law. To allow unbiased competition between sickness funds, a risk compensation pool, some kind of statutory reinsurance, will transfer financial resources from sickness funds with good risk structure to those with many bad risks. In many respects health policy has imposed what health economists have recommended for a long time. However, there is some doubt whether increased competition will really increase efficiency of providing medical care because it takes place in a highly regulated market.