Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz最新文献

Patient-reported outcome measures (PROMs) are becoming increasingly important for patient-centered assessment of treatment success in healthcare. In recent decades, a large number of instruments have been developed that allow for differentiated recording of symptoms, everyday functions, and various aspects of quality of life. PROMs are now used in nearly 50% of all clinical studies to compare treatments in terms of their benefits for patients. In addition, PROMs are used in quality assurance to compare the treatment success of various healthcare providers. In individual treatment, PROMs can be used to screen for psychological burden or mental health condition.The use of PROMs as an intervention in themselves is relatively new. Systematic symptom assessment in oncology allows side effects to be better controlled and regularly shows positive effects on patients' quality of life.Nevertheless, PROMs have been little used in routine clinical practice to date. For clinicians, the benefits for their daily work rarely outweigh the additional effort involved. The prerequisites for successful implementation in clinical processes currently appear to be, on the one hand, intersectoral harmonization of measurements and, on the other hand, better integration into electronic health records. In Germany and Europe, various initiatives have emerged in recent years, including as part of the Medical Informatics Initiative, which address both issues. It seems inconceivable that empirically oriented medicine will in the long term dispense recording one of the central therapeutic goals-how the patient is doing.

In recent years, oncological research has made significant progress improving treatment outcomes. Nevertheless, there is a growing recognition that greater focus must be placed on the patient's perspective, particularly with regard to quality of life and psychological coping. This article examines the integration of patient experience and knowledge into cancer research from a multi-stakeholder perspective, with a focus on self-help-oriented research.The article examines the integration of patient experience and knowledge into cancer research from a multi-stakeholder perspective, with a focus on self-help-oriented research. Cancer self-help plays a prominent role in patient participation and representation. The involvement of self-help groups (SHGs) and self-help organisations (SHOs) can significantly improve the feasibility, quality and, in particular, patient relevance of oncological studies. However, the degree of participation of members from SHGs and SHOs in research projects can vary greatly, from research without, to research with, or even research by self-help. The participatory and thus cooperative, joint and equal research represents the most democratic approach and is considered optimal. This results in various advantages for the directly and indirectly involved interest groups, such as researchers, patients and their relatives, healthcare professionals and care facilities, health and pension insurance funds, and society. However, self-help-oriented research is not without its prerequisites. The last part of the article discusses the conditions that promote success and the existing barriers to successful cooperation between research and self-help.

Introduction: Individuals with complex healthcare needs, such as those with chronic and multiple conditions, require continuous, cross-sectoral care. However, an increasingly complex healthcare system, characterized by a strict separation between outpatient and inpatient care, hampers continuity of care and contributes to overuse, underuse, and misuse of services. Healthcare navigators ("Gesundheitslotsen") aim to address these challenges by supporting affected individuals in navigating the healthcare system.

Methods: This scoping review provides an overview of the target populations, roles, and qualifications of navigators as well as the legal framework and effectiveness of navigators studied in projects funded by the German Innovation Fund (New Forms of Care) since 2016. All projects concerning navigators listed in the Innovation Fund database with a project report available as of 1 April 2025 were included in the analysis.

Results: A total of 31 navigator projects were identified, addressing a wide range of target groups. The most frequently targeted populations included individuals in challenging life situations (n = 10) and with cardiovascular diseases (n = 5), mental or neurological disorders (n = 5), and metabolic conditions (n = 3). Across all projects, 153 distinct endpoints were evaluated. In most cases, no effect was observed. Statistically significant positive effects were most frequently reported for patient-reported outcome measures (PROMs) (n = 21), process indicators (n = 19), and patient-reported experience measures (PREMs) (n = 10). Negative effects were primarily observed in health economic outcomes, particularly in terms of increased costs (n = 5).

Discussion: Standardizing reporting on pilot projects, concisely describing activities of patient navigators, and making greater use of impact models could help to improve understanding of the effectiveness of patient navigators in the future.

Shared decision making (SDM) is still scarcely implemented in Germany-a statement that could have served as an appropriate opening line of literally any article on SDM during the last decades. But why? Today, SDM is regarded as the gold standard for reaching decisions about the most suitable treatment, a view reinforced by the German Patients' Rights Act. How can it be that SDM nonetheless has not gained noticeable traction in medical practice?Drawing on the framework of synergetics, this article outlines which factors within the German healthcare system are responsible for this stagnation and how those same factors can be utilized to foster the emergence of SDM. As empirical evidence for this analysis, the Kiel Model demonstrates how SDM was implemented hospital-wide through the SHARE TO CARE program and was operationalized as a reimbursable service covered by health insurance. Its positive effects on quality of care and cost-effectiveness enabled a self-sustaining and thus sustainable SDM infrastructure.Finally, the article describes which simple regulatory adjustments by legislation would allow SDM to scale across hospitals nationwide through self-organization following the Kiel Model.

Patient-centeredness is a key quality indicator of modern healthcare. To systematically assess this aspect, patient-reported experience measures (PREMs) are increasingly used internationally. These tools enable standardized measurement of patient experiences and provide valuable information for evaluating and improving healthcare services. In Germany, however, there is still a lack of widespread, systematic use of such instruments.With the Experienced Patient-Centeredness Questionnaire (EPAT), a generic PREM is now available in German for the first time that comprehensively measures patient-centeredness. Developed through a rigorous and methodologically sound process, the EPAT captures all relevant dimensions of patient-centeredness. It demonstrates high content validity and strong psychometric properties. Its availability in both long and short versions allows for flexible use across various care settings-in both outpatient and inpatient contexts.PREMs like the EPAT are suitable for a wide range of applications, including health services research, as feedback instruments, or for benchmarking purposes. A broad implementation of PREMs and transparent reporting of results are called for by policymakers and demanded by patients. PREMs are gaining importance in quality assurance, and their impact is being increasingly explored in scientific studies. Overall, the use of PREMs holds significant potential for a forward-looking, patient-centered healthcare system.

In order to make health and healthcare research patient centred, the perspectives and experiences of patients should be systematically taken into account. Patient involvement means that those affected contribute to the research process not as research subjects, but as experts with lived experience of illness and healthcare. How this contributes to patient-centredness is described by means of three aspects: patient involvement can help to ensure that (1) relevant research topics are addressed, (2) research processes are designed to suit participants, and (3) results are discussed together with patients.In Germany, research funders and patient organizations are promoting the implementation of patient involvement. Both patients and researchers report positive experiences but also challenges. Research institutions can establish sustainable structures for this, as exemplified by the University Cancer Center Hamburg, where patients participate in advisory boards and act as ambassadors in cancer research.Effective implementation requires not only appropriate structures but also knowledge. Practical guidelines, examples, and training opportunities can provide a basis for this. Equally important is transparent reporting in order to critically reflect on involvement processes. Scientific evaluation can examine how and under which conditions patients can meaningfully contribute to research projects and what impacts involvement has on patients, researchers, and patient centeredness as well as on the process and the results of research projects.

Background: Patient-centered care takes into account the individual needs of patients and promotes participatory decision-making. In order for this concept to be implemented, it must recognize the diversity of social realities. This is countered by discrimination based on assumptions and exclusion, which affects the healthcare system at the personal, structural, and institutional levels. Discrimination impedes equitable care, for example with regard to gender, sexual orientation, language barriers, legal access, or social status. An individually oriented patient-centered approach must have an intersectional understanding of experiences of discrimination in order to recognize barriers and address them in care. Discrimination is not only an ethical problem, but also generates avoidable costs.

Implementation: International and national approaches are increasingly calling for marginalized groups to be placed at the center of patient-centered care and for inequities in care to be taken into account. There are already numerous initiatives that incorporate the knowledge and experiences of marginalized groups into the design, methodology, and implementation of health-related interventions. It is also important to professionalize the healthcare staff and, thus, also the structural competence in the institutions. The routine collection of data on health inequities and experiences of discrimination supports the development and implementation of concrete strategies.

Fields of action: Research, healthcare, and health policy are three central fields of action to which concrete changes must be linked in order to enable equal patient-centered care.

The Institute for Quality and Efficiency in Health Care (IQWiG) examines the benefits and harms of medical interventions for patients. It was founded in 2004. IQWiG also fulfills part of its statutory mandate to inform the public about health issues with the website gesundheitsinformation.de/informedhealth.org. The website addresses a wide range of health topics and is aimed at both ill and healthy individuals. IQWiG's work is fundamentally oriented towards the needs of affected people (patients, family members, and other healthy target groups). IQWiG utilizes a range of methods to obtain information and data from affected individuals or representatives of patient organizations and draw on in its work. The spectrum of methods includes verbal survey methods such as individual interviews or focus groups, written surveys, and published qualitative research results. This article focuses on the integration of the perspectives of those affected people in the development of health information. IQWiG supposes that this integration is one important reason for the high level of acceptance of gesundheitsinformation.de. This is reflected, among other things, in the results of regular user testing, feedback from support groups, patient representatives, professionals, and, last but not least, the fact that the website has such a far-reaching digital presence.

Patient-centred care means aligning medical services not only with clinical standards, but also with the needs and preferences of patients. Quality assurance in the healthcare sector aims to ensure this. Surveys play a central role in capturing, reflecting and understanding patients' experiences and needs in order to promote patient-centred care.Since 2016, the Institute for Quality Assurance and Transparency (IQTIG) has been developing patient surveys as an element of quality assurance programmes in the German healthcare system on behalf of the Federal Joint Committee (G-BA). Throughout the development of patient surveys for seven diagnosis-/indication-specific quality assurance programmes, the following overarching core topics could be identified: communication and interaction with patients, involvement in decision-making and patient's preferences, continuity of care and aftercare, information and education, patient-reported safety and treatment outcome.Furthermore, the IQTIG integrated the concept of shared decision-making (SDM) as a key component of patient-centred care in its survey instruments. To operationalize the quality requirements, the IQTIG pursues a fact-based survey approach and uses patient-reported experience measures (PREMs) and patient-reported outcome measures (PROMs). The analysis of this data provides important insights into care deficits and areas for improvement especially for healthcare providers and promotes transparency in the healthcare system.