Kathrin Gödde’s research while affiliated with Medizinische Hochschule Brandenburg Theodor Fontane and other places

Background Organizing healthcare becomes ever more complex for people with chronic conditions. Additionally, a distinct separation of inpatient and outpatient care makes it even more difficult to provide coordinated and continuous care across sectors in Germany. Our interview study aimed to identify difficulties and unmet needs along the care continuum of patients with lung cancer and stroke in Germany. Methods Data were collected by qualitative interviews. A total of 40 participants with lung cancer (n=20) and stroke (n=20) were interviewed in the metropolitan region of Berlin, Germany. Data were interpreted through thematic analysis. Results We identified five main categories of difficulties and unmet needs: 1. Bureaucracy, 2. Unmet information needs, 3. Feeling left alone, 4. Difficulties and unmet needs in healthcare institution settings, and 5. Psychological and emotional stress. Results of our study show a high overlap between the experienced difficulties of both groups of patients. These include, in particular, bureaucratic obstacles, the lack of detailed information, poor coordination of care, and the feeling of being alone with the disease and its consequences. Conclusion Patients with complex care trajectories seem to have great need for coordinative, social, bureaucratic, and emotional support and these support topics are largely independent of the index disease. Hence, our research suggests that support offers focusing on social and coordination needs do not have to be disease-specific but can rather cover general needs of people with complex care situations.

Background Digitalization is steadily advancing on a global scale, exerting a profound influence on health care systems. To facilitate acceptance of the digital transformation, guiding principles emphasize the need for digital health structures to be person-centered and promote high-quality care. This paper examines the implementation challenges within the German health care system, with a particular focus on how change initiatives engage with existing infrastructures and organizational modes of health care delivery. This approach provides a framework for analyzing how established infrastructure determines new developments while also highlighting the procedural dynamics of change and the integration of innovations within existing information infrastructures. These established infrastructures are referred to as the installed base. Objective The aim of the study is to examine the installed base encountered by the digital transformation within the German health care system by investigating information exchange practices among general practitioners (GPs) and their communication with other health care actors. Methods A mixed methods study including a quantitative survey and semistructured qualitative interviews was conducted. The study sample consisted of all publicly accessible GP practices (N=1348) situated in the state of Brandenburg, Germany. The survey captured demographic data, communication practices, and perceived barriers to digitalization. The interviews explored experiences with digital applications. Quantitative data were analyzed using R (R Foundation for Statistical Computing), and qualitative data were managed and analyzed in MAXQDA (VERBI Software GmbH) through content analysis. Results A total of 250 questionnaires (response rate 18.5%) and 10 interviews with GPs were included in the analysis. GPs primarily use the telephone (n=138, 55.2%, SD 24.64), fax (n=109, 43.9%, SD 25.40), or post (n=50, 20.2%, SD 9.46) to exchange information. Newer digital communication channels such as messenger applications (n=2, 0.8%, SD 0.72) and Communication in the Medical Sector (n=1, 0.5%, SD 0.97) play a minor role. We identified three intertwined clusters displaying diverse barriers to the digitalization of GPs’ communication practices: (1) incompatibility issues and technical immaturity, (2) lack of knowledge and technical requirements, and (3) additional technical, financial, and time-related burdens. These barriers were perceived as significant deterrents to the adoption of digital tools, with older GPs more reliant on analog systems and more likely to view digitalization as a source of frustration. Conclusions Newly established communication channels in the German health care system compete with the existing information infrastructure, which is deeply integrated into GPs’ practice routines and care processes. However, this installed base has been largely overlooked in digital transformation initiatives. While newer channels hold potential, they often malfunction and are incompatible with long-established, individualized GP workflows. Addressing these issues rather than imposing coercive measures is crucial for increasing adoption. Incorporating health care providers’ perspectives and aligning new channels with established routines can prevent frustration and facilitate a smoother digital transformation.

BACKGROUND Digitalization is steadily advancing on a global scale, exerting a profound influence on health care systems. To facilitate acceptance of the digital transformation, guiding principles emphasize the need for digital health structures to be person-centered and promote high-quality care. This paper examines the implementation challenges within the German health care system, with a particular focus on how change initiatives engage with existing infrastructures and organizational modes of health care delivery. This approach provides a framework for analyzing how established infrastructure determines new developments while also highlighting the procedural dynamics of change and the integration of innovations within existing information infrastructures. These established infrastructures are referred to as the installed base. OBJECTIVE The aim of the study is to examine the installed base encountered by the digital transformation within the German health care system by investigating information exchange practices among general practitioners (GPs) and their communication with other health care actors. METHODS A mixed methods study including a quantitative survey and semistructured qualitative interviews was conducted. The study sample consisted of all publicly accessible GP practices (N=1348) situated in the state of Brandenburg, Germany. The survey captured demographic data, communication practices, and perceived barriers to digitalization. The interviews explored experiences with digital applications. Quantitative data were analyzed using R (R Foundation for Statistical Computing), and qualitative data were managed and analyzed in MAXQDA (VERBI Software GmbH) through content analysis. RESULTS A total of 250 questionnaires (response rate 18.5%) and 10 interviews with GPs were included in the analysis. GPs primarily use the telephone (n=138, 55.2%, SD 24.64), fax (n=109, 43.9%, SD 25.40), or post (n=50, 20.2%, SD 9.46) to exchange information. Newer digital communication channels such as messenger applications (n=2, 0.8%, SD 0.72) and Communication in the Medical Sector (n=1, 0.5%, SD 0.97) play a minor role. We identified three intertwined clusters displaying diverse barriers to the digitalization of GPs’ communication practices: (1) incompatibility issues and technical immaturity, (2) lack of knowledge and technical requirements, and (3) additional technical, financial, and time-related burdens. These barriers were perceived as significant deterrents to the adoption of digital tools, with older GPs more reliant on analog systems and more likely to view digitalization as a source of frustration. CONCLUSIONS Newly established communication channels in the German health care system compete with the existing information infrastructure, which is deeply integrated into GPs’ practice routines and care processes. However, this installed base has been largely overlooked in digital transformation initiatives. While newer channels hold potential, they often malfunction and are incompatible with long-established, individualized GP workflows. Addressing these issues rather than imposing coercive measures is crucial for increasing adoption. Incorporating health care providers’ perspectives and aligning new channels with established routines can prevent frustration and facilitate a smoother digital transformation.

Background The German healthcare system has a distinct separation of outpatient and inpatient care, with no coordination along a patient's care trajectory between these sectors. Additionally, support offers are often unknown by patients and providers. To address these barriers, we developed a patient-oriented navigation program for people with chronic conditions in Germany, which mainly focus on the patients' individual needs. Methods In a mixed methods study our navigation program for people with lung cancer and stroke is being evaluated in the German healthcare context. Patient navigators support study participants in their individual healthcare organization and coordination for 13 months. Qualitative interviews are conducted regularly with the navigators to capture their experiences with the navigation program. Results In our study, three navigators support a total of 122 study participants. Their activities include emotional support, help with bureaucratic matters, organizing outpatient care and gathering specialized information. There is a high overlap in navigation tasks between the two groups of patients. Interviews show that the navigators perceive their work as meaningful and find the exchange within the team and the offer of supervision very important. Conclusions For navigation of chronic conditions that require complex care, such as lung cancer and stroke, it appears important to ensure that patients' emotional, social and coordination needs are met in a way that suits their individual wishes. The experiences of the navigators as providers of the navigation intervention can be used for a practice-oriented optimization of the navigation program. Key messages • Navigation tasks overlap to a large extent in both groups of patients despite the differences in disease trajectories. • We suggest that a patient-oriented navigation program focusing on social and coordination needs does not have to be disease-specific but can cover general needs of people with complex care situations.

Background In 2017 NAVICARE was established as a Berlin/Brandenburg-based network for patient-oriented health services research. The overall aim is to reduce barriers for patients with age-associated diseases and multimorbidity in the fragmented German health care system. The networks structural goal was to develop a research environment in which scientifically developed regional health services interventions for better coordinated care are piloted. Methods During two funding periods, an overarching infrastructure was built in the network to connect and support participating researchers as well as external stakeholders from different disciplines, support education and coordinate the network's dissemination and events. In a critical reflection process between participating researchers, we collected experiences and lessons learned from work in the multidisciplinary research network. Results A shared coordinating infrastructure, including monthly meetings, to bring in different competencies, perspectives, methods and research questions has been described as beneficial. This includes expertise from participating researchers as well as connected external partners. Experienced challenges are high time effort of networking, bringing together different views as well as logistical-organizational barriers in building overarching and permanent structures. Conclusions Work in a research network can provide structural support by collating information and expertise to support better health services research and allowing the integration of different perspectives from internal as well as external partners involved in health care. An overarching coordinating infrastructure should provide an effective flow of information and connect all partners in a time efficient manner. Key messages • Multidisciplinary networking can support a patient-oriented health services research environment. • However, for the regional network to be efficient a goal-oriented coordination and time-balanced communication is key.

Background: Identifying predictors of subjective unmet need for assistance with activities of daily living (ADL) is necessary to allocate resources in social care effectively to the most vulnerable populations. In this study, we aimed at identifying population groups at risk of subjective unmet need for assistance with ADL and instrumental ADL (IADL) taking complex interaction patterns between multiple predictors into account. Methods: We included participants aged 55 or older from the cross-sectional German Health Update Study (GEDA 2019/2020-EHIS). Subjective unmet need for assistance was defined as needing any help or more help with ADL (analysis 1) and IADL (analysis 2). Analysis 1 was restricted to participants indicating at least one limitation in ADL (N = 1,957). Similarly, analysis 2 was restricted to participants indicating at least one limitation in IADL (N = 3,801). Conditional inference trees with a Bonferroni-corrected type 1 error rate were used to build classification models of subjective unmet need for assistance with ADL and IADL, respectively. A total of 36 variables representing sociodemographics and impairments of body function were used as covariates for both analyses. In addition, the area under the receiver operating characteristics curve (AUC) was calculated for each decision tree. Results: Depressive symptoms according to the PHQ-8 was the most important predictor of subjective unmet need for assistance with ADL. Further classifiers that were selected from the 36 independent variables were gender identity, employment status, severity of pain, marital status, and educational level according to ISCED-11. The AUC of this decision tree was 0.66. Similarly, depressive symptoms was the most important predictor of subjective unmet need for assistance with IADL. In this analysis, further classifiers were severity of pain, social support according to the Oslo-3 scale, self-reported prevalent asthma, and gender identity (AUC = 0.63). Conclusions: Reporting depressive symptoms was the most important predictor of subjective unmet need for assistance among participants with limitations in ADL or IADL. Our findings do not allow conclusions on causal relationships. Predictive performance of the decision trees should be further investigated before conclusions for practice can be drawn.

Background Patient navigation programmes were introduced in the United States and recently gained interest in Germany, where the health care system is fragmented. Navigation programmes aim to decrease barriers to care for patients with age-associated diseases and complex care paths. Here we describe a feasibility study to evaluate a patient-oriented navigation model that was developed in a first project phase by integrating data about barriers to care, vulnerable patient populations and existing support services. Methods We designed a mixed-methods feasibility study that consists of two two-arm randomized controlled trials aligned with observational cohorts. The intervention group of the RCTs gets support by personal navigators for 12 months. The control group receives a brochure with regional support offers for patients and caregivers. The feasibility of the patient-oriented navigation model for two prototypic age-associated diseases, lung cancer and stroke, is evaluated with regard to its acceptance, demand, practicality and efficacy. This investigation includes process evaluation measures with detailed documentation of the screening and recruitment process, questionnaires about satisfaction with navigation, observant participation and qualitative interviews. Estimates of efficacy for patient-reported outcomes are obtained at three follow-up time points including satisfaction with care and health-related quality of life. Furthermore, we analyze health insurance data from patients of the RCT insured at a large German health insurance (AOK Nordost) to investigate heath care utilization, costs and cost effectiveness. Trial registration The study is registered at the German Clinical Trial Register (DRKS-ID: DRKS00025476).

Background Lung cancer survivors are particularly affected by psychological distress. At the same time, rates of utilization of psycho-oncological support are relatively low. Little is known about the reasons for (non)utilization.Objective What psychological and emotional distress do people with lung cancer experience? What are their reasons for (not) utilizing psycho-oncological support?Material and methodsQualitative interviews with 20 people affected by lung cancer were conducted and analyzed as part of the CoreNAVI study.ResultsRespondents experience psychological distress in the form of uncertainties and fears about the future. Those affected also perceive the pressure of having to go quickly from one treatment to the next and having no time for themselves as stressful. The users of psycho-oncology find it very helpful to speak openly without having to burden their personal relationships, and to receive concrete advice. Nonutilization is explained by a lack of need and a lack of capacity. In addition, reluctance to use psychological support is evident in the interviews.Conclusion Individuals with lung cancer also experience psychological and emotional distress due to the large number and high density of therapies. The resulting lack of capacity could be an explanation for the low utilization of psycho-oncological support. A greater emphasis on psycho-oncology over costly medical therapies that often only marginally prolong life and reducing reluctance to accept psychological help should be a greater focus in healthcare practice.

Background The concept of patient navigation was first established in the USA to support vulnerable patient groups in receiving timely and comprehensive access to cancer care. It has recently gained increasing interest in Germany to support patients with chronic diseases in a fragmented healthcare system. The aim of this paper is to present the development of such a model adapted to the German context based on the results of mixed-methods studies investigating the need for and barriers to patient-oriented care. Methods In a process adapted from Delphi rounds, we conducted regular structured workshops with investigators of the project to discuss results of their studies and identify content and structure of the model based on the data. Workshop discussions were structured along seven core components of a navigation model including target patient groups, navigator tasks, occupational background and education of navigators, and patient-navigator interaction mode. Results Using an approach based on empirical data of current care practices with special focus on patients’ perspectives, we developed a patient-oriented navigation model for patients who have experienced stroke and lung cancer in the German healthcare context. Patients without personal social support were viewed as struggling most with the healthcare system, as well as multimorbid and elderly patients. Navigators should serve as a longer-term contact person with a flexible contact mode and timing based on the individual situation and preferences of patients. Navigator tasks include the provision of administrative and organizational support as well as referral and guidance to available resources and beneficial health programs with special forms of knowledge. Implementation of the navigator should be flexibly located to ensure a reliable outreach to vulnerable patients for first contact in settings like specialized in-patient and out-patient settings, while navigation itself focuses on care coordination in the out-patient setting. Conclusion Flexibility of navigator tasks needed to be a core characteristic of a navigation model to be perceived as supportive from patients’ perspectives. In a subsequent feasibility study, an intervention based on the model will be evaluated according to its acceptance, demand, and practicality.