Christoph Gerst , Florian Gottschalk , Eva Hummers , Falk Schlegelmilch
{"title":"Umsetzung des Widerrufrechtes bei der Verarbeitung von Gesundheitsdaten in Forschungsprojekten","authors":"Christoph Gerst , Florian Gottschalk , Eva Hummers , Falk Schlegelmilch","doi":"10.1016/j.zefq.2025.09.003","DOIUrl":"10.1016/j.zefq.2025.09.003","url":null,"abstract":"<div><h3>Background</h3><div>Processing data in health services research requires informed patient consent. When this consent is withdrawn, researchers face the challenge of correctly implementing legal requirements regarding data protection. This article aims to identify and analyze the tasks research institutions must undertake when processing a withdrawal of consent for data processing.</div></div><div><h3>Methods</h3><div>Using a withdrawal case from the RADARplus research project, we conducted a legal analysis of requirements under the General Data Protection Regulation (GDPR) and other relevant legal frameworks. Based on this analysis, we discuss implementation approaches.</div></div><div><h3>Results</h3><div>The analysis reveals the complexity of implementing a withdrawal of consent procedure: Data may exist in various systems (research databases, backup systems, paper records) and must be identified accordingly. Different retention requirements apply depending on the type of data and legal basis. We outline responsibilities and practical approaches to restricting data processing, such as technical access limitations and blocking notices.</div></div><div><h3>Discussion</h3><div>The practical implementation of the right to withdraw consent presents complex challenges for research institutions. Open questions remain, particularly regarding pseudonymized data, long-term data storage, and collaboration with multiple research partners. While the suggested guidance provides a structured approach for legally compliant processing of withdrawals, it does not eliminate the need for data protection assessment and proper documentation.</div></div>","PeriodicalId":46628,"journal":{"name":"Zeitschrift fur Evidenz Fortbildung und Qualitaet im Gesundheitswesen","volume":"198 ","pages":"Pages 82-91"},"PeriodicalIF":1.7,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145245538","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Alizé Rogge , Felix Fischer , Sophie Dombrowski , Matthias Rose , Gregor Liegl
{"title":"Developing a roadmap for consultations on patient-reported outcomes: Insights from the PROCES study","authors":"Alizé Rogge , Felix Fischer , Sophie Dombrowski , Matthias Rose , Gregor Liegl","doi":"10.1016/j.zefq.2025.09.006","DOIUrl":"10.1016/j.zefq.2025.09.006","url":null,"abstract":"<div><h3>Introduction</h3><div>Patient-reported outcomes (PROs) are increasingly recognized for their potential to enhance patient-centered and value-based healthcare. However, their implementation remains inconsistent, often hindered by fragmented approaches and a lack of sufficient expertise, leaving stakeholders without adequate practical support. To bridge this gap, a structured framework for PRO consulting services is crucial, yet currently absent in Germany. The PROCES study aimed to develop a roadmap as a first step to enable standardized, context-adaptive, and resource-efficient PRO implementation in both research and clinical care.</div></div><div><h3>Methods</h3><div>PROCES employed a mixed-methods approach, including (1) semi-structured qualitative interviews with 28 stakeholders at one university hospital, (2) an anonymous survey of 17 PRO experts across seven European countries, and (3) a two-day on-site workshop with PRO experts to refine findings. Data were analyzed using qualitative content analysis and descriptive statistics.</div></div><div><h3>Results</h3><div>The study identified three main challenges: diverse stakeholder needs, increasing demand for consultations, and limited funding. A roadmap was proposed, including a decision-support flowchart for routine care and a filter scheme to manage incoming PRO requests to optimize resource allocation. Additionally, 75 % of surveyed experts supported the establishment of an international PRO network to standardize consultancy practices.</div></div><div><h3>Discussion</h3><div>The PROCES findings represent a significant step toward standardized PRO consultancy services in Germany, emphasizing a construct-centered, instrument-independent approach. Future research should evaluate its adaptability and explore its potential as a blueprint for fostering a national PRO approach in Germany.</div></div><div><h3>Conclusion</h3><div>This roadmap addresses key barriers to PRO implementation, including unstructured consultations and fragmented efforts, while promoting sustainable and efficient implementation.</div></div>","PeriodicalId":46628,"journal":{"name":"Zeitschrift fur Evidenz Fortbildung und Qualitaet im Gesundheitswesen","volume":"198 ","pages":"Pages 54-61"},"PeriodicalIF":1.7,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145423163","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Larisa Pilic , Lisa Kupsch , Marcus Redaèlli , Kira Molkentin , Beate Sigrid Müller , Stephanie Stock , Stefan Wilm
{"title":"Unzufriedenheit mit dem DMP KHK: explorativer Survey mit Hausärzt*innen zu den DMP Diabetes mellitus Typ 2 und Koronare Herzkrankheit","authors":"Larisa Pilic , Lisa Kupsch , Marcus Redaèlli , Kira Molkentin , Beate Sigrid Müller , Stephanie Stock , Stefan Wilm","doi":"10.1016/j.zefq.2025.05.008","DOIUrl":"10.1016/j.zefq.2025.05.008","url":null,"abstract":"<div><h3>Background</h3><div>Disease management programs (DMPs) were implemented in 2002 to improve the care for a growing number of chronically ill people in Germany. However, the current state of research on the effectiveness and acceptance of DMPs does not allow valid comparisons between them. The aim of the survey was to compare general practitioners’ (GPs’) experiences with DMPs for type 2 diabetes mellitus (T2DM) and coronary heart disease (CHD). The survey complements the results of a qualitative study conducted in 2020.</div></div><div><h3>Methods</h3><div>Cross-sectional exploratory study using an online survey among GPs in the area of the North Rhine Association of Statutory Health Insurance Physicians in 2023. In addition to general questions on DMPs, the DMPs for T2DM and CHD were compared in regard to three main topics: (1) perceived effectiveness of DMPs, (2) satisfaction with DMPs, and (3) perceived self-management of patients in the DMPs. A total of 42 items were used.</div></div><div><h3>Results</h3><div>The survey was completed by 186 GPs, resulting in a response rate of 10.4%. 96% were practice owners, all of whom had experience in implementing these DMPs. Significant differences were observed in the perceived effectiveness of the two DMPs, e.g. in reducing complications and hospitalizations, with consistently lower ratings for the DMP for CHD. This was also evident in the thematic blocks on satisfaction with DMPs, with regard to enrolment patterns and documentation, as well as patients’ self-management in terms of health behaviour and personal responsibility.</div></div><div><h3>Conclusion</h3><div>Future studies should examine DMPs in GP care separately, given the significant differences in how they are evaluated by GPs. In addition, DMPs should be analysed in more detail regarding effectiveness, feasibility, and acceptance, especially the DMP for CHD.</div></div>","PeriodicalId":46628,"journal":{"name":"Zeitschrift fur Evidenz Fortbildung und Qualitaet im Gesundheitswesen","volume":"198 ","pages":"Pages 45-53"},"PeriodicalIF":1.7,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145293767","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Florian Weidinger , Jana Räbel , Elmar Gräßel , Thomas Ganslandt , Peter Kolominsky-Rabas , Martin Emmert
{"title":"Kosten informeller Pflege bei Menschen mit kognitiven Beeinträchtigungen: eine Kostenstudie aus dem Digitalen Demenzregister Bayern (digiDEM Bayern)","authors":"Florian Weidinger , Jana Räbel , Elmar Gräßel , Thomas Ganslandt , Peter Kolominsky-Rabas , Martin Emmert","doi":"10.1016/j.zefq.2025.10.001","DOIUrl":"10.1016/j.zefq.2025.10.001","url":null,"abstract":"<div><h3>Background</h3><div>Informal care costs account for the largest share of the total costs of dementia. The informal care costs of dementia have been well researched in Germany, but the group of family caregivers of people with MCI (“mild cognitive impairment”) has not been taken into account so far. The aim of this study is to evaluate the care time spent by family caregivers of people with cognitive impairment according to the severity of the disease and to estimate informal care costs.</div></div><div><h3>Methods</h3><div>The data is based on the multicenter, prospective registry study “Digital Dementia Regustry Bavaria – digiDEMBayern” (German title: “Digitales Demenzregister Bayern – digiDEM Bayern”). Information on informal care time was collected using the “Resource Utilization in Dementia Lite (RUD-Lite)” instrument. Informal care costs were calculated using the opportunity cost approach. Sensitivity analyses were used to determine a high and a low cost estimate and to compare them with each other. Severity-related differences were assessed using variance analyses.</div></div><div><h3>Results</h3><div>The survey results of 445 people with cognitive impairment and their informal caregivers were evaluated. The average care time to support activities of daily living significantly increased with greater severity (p = 0.005). The average cost of informal caregiving was between 15,057 and 30,994 EUR for people with mild cognitive impairment, between 19,785 and 38,747 EUR for people with mild dementia, and between 23,709 and 48,451 EUR for people with moderate dementia.</div></div><div><h3>Discussion</h3><div>Several earlier studies found an increase in the costs of informal caregiving with increasing cognitive decline in Germany. However, these studies differ in the methodologies used. There are various reasons why comparatively higher costs of informal care have been calculated in the present study.</div></div><div><h3>Conclusion</h3><div>It is likely that the annual costs of informal caregiving are in the range described, depending on the level of severity. The results indicate that people caring for family members with MCI bear a significant burden and that this leads to high social costs. The indirect costs of dementia increase the burden on society also from an economic perspective.</div></div>","PeriodicalId":46628,"journal":{"name":"Zeitschrift fur Evidenz Fortbildung und Qualitaet im Gesundheitswesen","volume":"198 ","pages":"Pages 27-34"},"PeriodicalIF":1.7,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145453471","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Editorial: Gesundheitsökonomische Evaluation komplexer Interventionen – Zeit den Horizont zu erweitern","authors":"Juliane Köberlein-Neu , Andrea Icks","doi":"10.1016/j.zefq.2025.09.001","DOIUrl":"10.1016/j.zefq.2025.09.001","url":null,"abstract":"","PeriodicalId":46628,"journal":{"name":"Zeitschrift fur Evidenz Fortbildung und Qualitaet im Gesundheitswesen","volume":"198 ","pages":"Pages 100-101"},"PeriodicalIF":1.7,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145179417","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Inhaltsverzeichnis / Table of Contents","authors":"","doi":"10.1016/S1865-9217(25)00221-1","DOIUrl":"10.1016/S1865-9217(25)00221-1","url":null,"abstract":"","PeriodicalId":46628,"journal":{"name":"Zeitschrift fur Evidenz Fortbildung und Qualitaet im Gesundheitswesen","volume":"198 ","pages":"Pages iii-iv"},"PeriodicalIF":1.7,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145625110","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Annika Queder , Lea Gölz , Michel Wensing , Charlotte Ullrich
{"title":"Versorgungsforschung als vielfältiges Beschäftigungsfeld in Deutschland: eine Dokumentenanalyse von Stellenanzeigen","authors":"Annika Queder , Lea Gölz , Michel Wensing , Charlotte Ullrich","doi":"10.1016/j.zefq.2025.07.002","DOIUrl":"10.1016/j.zefq.2025.07.002","url":null,"abstract":"<div><h3>Introduction</h3><div>Since the mid-2010s, health services research (HSR) in Germany has been increasingly institutionalized. However, little is known about actual career paths within the field. The aim of this study was to describe the HSR job market in Germany, both in general terms and specifically for graduates of health services research master degree programs.</div></div><div><h3>Methods</h3><div>Over a period of three months in spring 2022, four employment websites and the websites of the German Network for HSR were searched for job advertisements containing the term “health services research”. Using document analysis, the job advertisements identified were analyzed with regard to a) employer characteristics, b) job characteristics, and c) significance of HSR.</div></div><div><h3>Results</h3><div>Of the 1,474 job advertisements identified, 360 were included in the analysis. These were mainly from hospitals (31.94 %, n = 115), companies (29.44 %, n = 106), and universities (23.33 %, n = 84). The majority of the positions offered required a Master’s degree or a higher qualification (57.22 %, n = 206), and for 76 positions (36.89 %) there was the additional requirement of a completed vocational training and/or main occupation in patient care. Most of the 91 job offers for graduates of a HSR master’s program were temporary (65.93 %, n = 60) and in the field of science and research (89.01 %, n = 81). About half were full-time positions (46.15 %, n = 42).</div></div><div><h3>Discussion</h3><div>The study shows an increasing number of job advertisements including the search term “health services research”, a broad understanding of the term and associated heterogeneous qualification requirements and job characteristics.</div></div><div><h3>Conclusion</h3><div>Our findings contribute to a better understanding of HSR as a professional field in Germany. The results provide guidance for students, graduates, and teachers in HSR.</div></div>","PeriodicalId":46628,"journal":{"name":"Zeitschrift fur Evidenz Fortbildung und Qualitaet im Gesundheitswesen","volume":"198 ","pages":"Pages 72-81"},"PeriodicalIF":1.7,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145006667","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Liste der Affiliierten Institute und Fachgesellschaften / List of Affiliations","authors":"","doi":"10.1016/S1865-9217(25)00231-4","DOIUrl":"10.1016/S1865-9217(25)00231-4","url":null,"abstract":"","PeriodicalId":46628,"journal":{"name":"Zeitschrift fur Evidenz Fortbildung und Qualitaet im Gesundheitswesen","volume":"198 ","pages":"Page OBC"},"PeriodicalIF":1.7,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145625014","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"„Übersichtlich an Daten kommen, die spezifisch für die Region sind“ – Implementierung und Evaluation einer Onlineplattform für Forschungsdaten der Metropolregion Rheinland am Beispiel der Versorgungsforschung im letzten Lebensjahr","authors":"Kathleen Boström , Katja Blaschke , Thomas Dojan , Ingo Meyer , Kerstin Kremeike","doi":"10.1016/j.zefq.2025.08.002","DOIUrl":"10.1016/j.zefq.2025.08.002","url":null,"abstract":"<div><h3>Introduction</h3><div>Healthcare research results often do not find their way into practice due to missing or under-utilized communication channels. Consequently, these results fail to impact the healthcare system. To bridge this “translation gap,” solutions tailored to the needs and habits of users are required.</div></div><div><h3>Methods</h3><div>We conceptualized and implemented an online platform to communicate the results of two completed healthcare research projects to both professionals and the public in Cologne. This was achieved using a co-design approach with end users. The platform was evaluated for user satisfaction, efficiency, effectiveness, conformity with expectations, and usage through participant observation, an online survey, and web statistics analysis. A final redesign was conducted based on the evaluation.</div></div><div><h3>Results</h3><div>The platform was implemented according to the co-design concept. Most online survey participants found the site easy to use and engaging in terms of content. However, criticisms included the lack of multimedia and interactive content, the large amount of text used, and the absence of specific expected information.</div></div><div><h3>Discussion</h3><div>After the redesign, the platform met part of the requirements emerging from the evaluation. Nonetheless, improvements are needed in multimedia and interactive content presentation, as identified in the evaluation. The lack of specific expected content highlights unanswered research questions of the underlying projects.</div></div><div><h3>Conclusion</h3><div>The developed platform has been online since the end of the development phase and continues to be used. The study demonstrated that a co-design approach can yield usable results in the field of science.</div></div>","PeriodicalId":46628,"journal":{"name":"Zeitschrift fur Evidenz Fortbildung und Qualitaet im Gesundheitswesen","volume":"198 ","pages":"Pages 18-26"},"PeriodicalIF":1.7,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145087705","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}