Predictive and preventive medicine play an increasingly important role in public debates on health, providing cutting-edge technologies with the potential to measure and predict individual risks of getting ill. This leads to an ever-expanding definitional space between being “healthy” and being “ill”, challenging the individual’s everyday life, attitudes and perceptions towards the self and the process of health-related decision-making. “How do the condition of ‘being at risk’ and individual health literacy interrelate?” is the leading question of the current contribution. Drawing on empirical qualitative data, collected by means of narrative interviews with persons at risk in four clinical fields, a bottom-up ethnographic and health sciences perspective on health literacy (with an emphasis on critical health literacy) is employed. The findings will be embedded within theoretical approaches dealing with power relations and communication in healthcare encounters, particularly Habermas’ theory of communicative action. The core outcome of our study is a concept for an overarching model of health literacy in the context of health-related risk prediction across indications, based on empirical insights gained through interpretative analysis of the four clinical domains.

Aim: This contribution empirically analyses and theoretically reflects health literacy (HL) and shared decision-making (SDM) in the context of predictive medicine, taking in the perspective of healthcare professionals (HCPs). The aim is to identify ways to promote HL of persons dealing with disease risk, and to support SDM in predictive consultations. Methods: The perspectives of HCPs consulting patients at early prediction centers and advising them with respect to preventive therapies or further diagnostic procedures were examined using semi-structured, qualitative expert interviews and a complementary survey. Results: The data reveal resources and challenges regarding risk communication and the empowerment of patients for informed and health-literate decisions upon their disease risk. They also show potentially useful communication strategies and prerequisites for demand-oriented decision-making in the predictive setting. Furthermore, the findings highlight that risk communication and patient information in predictive medicine are considered to be underrepresented in medical education and training. Therefore, this contribution provides implications and suggestions for educational concepts and practical tools for medical education and predictive practice. Conclusion: We emphasize communication and interaction between HCPs and patients as crucial for health-literate decision-making in the specific context of predictive medicine. This study’s results indicate relevant aspects of social and communicational skills that need to be considered in consultation guides and integrated into medical education and training, to provide individual-sensitive consultation and HL promotion for people at risk.

The continuous development of medical implants offers various benefits for persons with chronic conditions but also challenges an individual’s, and the healthcare system’s, ability to deal with technical innovation. Accessing and understanding new information, navigating healthcare, and appraising the role of the implant in body perceptions and everyday life requires health literacy (HL) of those affected as well as an HL-responsive healthcare system. The interconnectedness of these aspects to ethically relevant values such as health, dependence, responsibility and self-determination reinforces the need to address HL in implant care. Following a qualitative approach, we conducted group discussions and a diary study among wearers of a cochlear, glaucoma or cardiovascular implant (or their parents). Data were analysed using the documentary method and grounded theory. The data reveal the perceptions of implant wearers regarding the implant on (1) the ability to handle technical and ambiguous information; (2) dependence and responsibility within the healthcare system; and (3) the ethical aspects of HL. Knowing more about the experiences and values of implant wearers is highly beneficial to develop HL from an ethical perspective. Respective interventions need to initially address ethically relevant values in counselling processes and implant care.

Background: The significance of medical implants goes beyond technical functioning and reaches into everyday life, with consequences for individuals as well as society. Ethical aspects associated with the everyday use of implants are relevant for individuals’ lifeworlds and need to be considered in implant care and in the course of technical developments. Methods: This scoping review aimed to provide a synthesis of the existing evidence regarding ethically relevant psychosocial and cultural aspects in cochlear, glaucoma and cardiovascular implants in patient-centered empirical research. Systematic literature searches were conducted in EBSCOhost, Philpapers, PsycNET, Pubmed, Web of Science and BELIT databases. Eligible studies were articles in German or English language published since 2000 dealing with ethically relevant aspects of cochlear, glaucoma and passive cardiovascular implants based on empirical findings from the perspective of (prospective) implant-wearers and their significant others. Following a descriptive-analytical approach, a data extraction form was developed and relevant data were extracted accordingly. We combined a basic numerical analysis of study characteristics with a thematically organized narrative synthesis of the data. Results: Sixty-nine studies were included in the present analysis. Fifty were in the field of cochlear implants, sixteen in the field of passive cardiovascular implants and three in the field of glaucoma implants. Implant-related aspects were mainly found in connection with autonomy, freedom, identity, participation and justice, whereas little to no data was found with regards to ethical principles of privacy, safety or sustainability. Conclusions: Empirical research on ethical aspects of implant use in everyday life is highly relevant, but marked by ambiguity and unclarity in the operationalization of ethical terms and contextualization. A transparent orientation framework for the exploration and acknowledgment of ethical aspects in “lived experiences” may contribute to the improvement of individual care, healthcare programs and research quality in this area. Ethics-sensitive care requires creating awareness for cultural and identity-related issues, promoting health literacy to strengthen patient autonomy as well as adjusting healthcare programs accordingly. More consideration needs to be given to sustainability issues in implant development and care according to an approach of ethics-by-design.

Patientenorientierung ist der Weg hin zu einem patientenzentrierten Gesundheitswesen, das die Bedürfnisse von Patienten in den Mittelpunkt stellt. Sie ist eine von Zulassungsbehörden, Erstattungsinstitutionen und nicht zuletzt von den Patienten selbst geforderte Markterfordernis. Auf der Ebene des pharmazeutischen Unternehmers hat Patientenorientierung fünf Dimensionen: (i) Strategie und Organisation, (ii) Forschung bzw. Portfoliomanagement, (iii) Entwicklung und Marktzugang, (iv) Leistungen und Servicedesign sowie (v) transparente und respektvolle Kommunikation. Die systematische Einbeziehung von Patientenexpertise in alle diese Dimensionen bedeutet einen Paradigmenwechsel. Sie muss systematisch und regelmäßig erfolgen und kann in unterschiedlichen Formen geschehen. Eine Umfrage unter Mitgliedsunternehmen des Bundesverbands der pharmazeutischen Industrie (BPI) e.V. hat ergeben, dass für die meisten Unternehmen der Gewinn von Erkenntnissen über die Bedürfnisse der Patienten und die Optimierung ihrer Produkte bzw. Leistungen im Vordergrund der Patientenarbeit stehen. Bisher haben bereits 30 % der Unternehmen einen „Patient Officer“ (oder ähnliche Bezeichnung). Dieser wird als erforderlich angesehen, um eine nachhaltige Patientenorientierung im Unternehmen zu bewirken. Echte Patientenorientierung kann nur gelingen, wenn sie kein „Beiwerk“ darstellt, sondern als unabdingbare Voraussetzung für wirtschaftlichen Erfolg gelebt wird.

In the process of developing and implementing innovative implant technologies the consideration of patient preferences can be beneficial for patients, doctors and developers. Nevertheless, in existing literature, there is still scarce knowledge of patients’ perspectives on long-term implant care. In this study, three discrete choice experiments (DCEs) were conducted in the context of cochlear implants (CI, n = 92), glaucoma implants (GI, n = 21) and cardiovascular implants (CVI, n = 23), examining the relative importance of attributes of long-term implant care from the patients’ perspective. The participants chose between differently shaped options for implant-related care. The attributes of these care options were generated and selected based on previous literature reviews, group discussions and a diary study with patients. The choice data were analyzed via binary logit regression. In CI-DCE, the technological compatibility of the implant with newer implant models, accessories or devices from other manufacturers was highly valued by participants, whereas in GI-DCE the (in)dependency on glaucoma medication post-implantation had the greatest influence on participants’ choice behavior. In CVI-DCE, the attribute with the highest relative importance related to the means of securing long-term treatment success. In all three DCE, shared decision making was relatively important for participants. Our results emphasized the importance of an adequate transfer of technological advancements in implant care for promoting patient benefits, such as the availability of comprehensible, understandable, high-quality information about current developments. Similarly, promoting technological health literacy and further pushing the technological compatibility, durability and safety of implants are directions for future implant development in accordance with patients’ preferences. Therefore, the participation of implant wearers in the development process is encouraged.