[Knowledge and attitudes towards sharing of health data: Results of a population survey]. / Wissen und Einstellung zur Speicherung und Nutzung von Gesundheitsdaten: Ergebnisse einer Bevölkerungsbefragung.

OBJECTIVE: The article tackles various issues arising in the context of the process of digitalization in the health sector. The communication and availability of health data, health registers, the electronic health record, consent procedures for the transfer of data and access to health data for research are considered. METHODS: The study is based on a computer-assisted telephone survey (dual-frame) of a random sample of adult people living in Germany. Data was collected in the period between June 01 and June 27, 2022 (n = 1,308). RESULTS: The level of knowledge concerning the transmission of health data to health insurers is good, whereas the existence of central death-, vaccination- and health registers as well as the access to health data by treating physicians is overestimated. The general acceptance of medical registers is very high. Half the population is unfamiliar with the electronic health record, and the willingness to use it is rather low. An opt-in procedure is preferred when transferring data, and more than eighty percent would release data in their electronic health file for research purposes. Three quarters would consent that their health data be handed over to general research, especially if reserach facilities were situated at German universities, under the condition that their data be treated confidentiallly. The willingness to release data correlates with the level of trust in the press as well as in universities and colleges and decreases when a data leak is considered to be serious. DISCUSSION AND CONCLUSION: In Germany, as in other European countries, we observe a great willingness of people to release health data for research purposes. However, the propensity to use the electronic health file is comparatively low, as is the acceptance of an opt-out procedure, which in the literature is considered a prerequisite for the successful implementation of electronic health records in other countries. Unsurprisingly, a general trust in research and government agencies that process health data is a key factor.

MMpowerment: Empowering patients with multiple myeloma for shared decision-making by developing an intervention to integrate personal preferences into digital care pathways.

OBJECTIVE: As part of a quality improvement initiative in the context of value-based health care we aimed to optimize the shared decision-making (SDM) process in the care pathway for Multiple Myeloma as part of a digital care pathway (DCP). For this, more insight was needed in health care professionals' (HCPs') perspectives on SDM, and how SDM elements could be addressed in a DCP for MM to facilitate HCPs' performance of SDM. METHODS: HCPs were interviewed as per the theory of planned behaviour and the model of organizational context and SDM (phase 1). Multidisciplinary development sessions were organized to discuss concepts of the solution with HCPs (phase 2). The solution was evaluated with two patients from the quality improvement team. RESULTS: In phase 1, ten interviews were held. HCPs' attitudes and the subjective norm towards SDM were positive, and the intention to perform SDM was high. The clinical environment (physical context, disease characteristics, assumptions about patient characteristics, and workflows) for MM posed challenges on the actual SDM behavior. Education and use of the DCP to create awareness of SDM were seen as possible facilitators for SDM. A prepared and active patient would facilitate the SDM process. In phase 2, three concept solutions were developed before arriving at the final solution. The final solution consisted of three elements to incorporate SDM steps in the DCP: 1) creating patient awareness and activation with two questions about their preferences prior to a consultation, 2) visualisation of preferences centrally in the DCP to trigger HCP to discuss them, 3) monitoring and improving SDM with patient-questionnaires after decision-making. Patients and HCPs were willing to implement it. CONCLUSION: HCPs intention to engage in SDM was high, but their actual behaviour was challenged by the clinical environment. A 3-element DCP-based intervention was developed to increase SDM. PATIENT OR PUBLIC CONTRIBUTION: Input on the solution was obtained from end-users including two patients and ten healthcare professionals.

What does it take to create a European Health Data Space? International commitments and national realities.

Public health concerns in Europe demonstrate the necessity of building a health policy that could contribute to the long-term sustainable development of the European Union (EU), as stated in the European Health Union (EHU) manifesto. The main desire to create an EHU is embodied in the launch of the European Health Data Space (EHDS). The EHDS seeks to foster a genuine single market for digital health services and products by, among other things, accelerating the uptake and implementation of harmonised and interoperable electronic health record (EHR) systems across the EU. In the context of primary and secondary use of EHR data, developments in Europe have thus far resulted in patchy and, in some places, non-interoperable solutions. Taking the gap between international ambitions and national realities as a starting point, this paper contends that both EU level and Member State level circumstances should be considered to make the EHDS a reality.

[For discussion: The state of digitization of the German healthcare system]. / Zur Diskussion: Stand der Digitalisierung im deutschen Gesundheitswesen.

The state of digitization of the German healthcare system has often been characterized as unsatisfactory. This euphemistic classification suggests a problem of implementation. In reality, however, the problems lie much deeper in the structure of the German healthcare system, which makes both the establishment of a comprehensive eHealth governance and the sustainable implementation of digital transformation virtually impossible. Actors that could promote digitization are either not well organized (patients) or have got stuck in the last century technologically (hospitals). Focusing on ambitious large-scale projects while at the same time facing essential problems of interoperability and governance, pragmatic solutions on a small scale are blocked and multiple legitimations for non-action are created. In mobile health apps, problems and solutions accumulate. The only question is whether in the end the persistence forces of the German healthcare system will plunge the American internet giants into lethargy or whether these will take over data sovereignty in the German healthcare system through useful and usable applications.

[For discussion: What potential does digitization hold for patient safety?] / Zur Diskussion: Welches Potential hat Digitalisierung für die Patientensicherheit?

Digitization is comparatively underdeveloped in the German healthcare system. Many digital applications are potentially capable of improving patient safety. This potential cannot be exploited in the long term with regional and time-limited projects. The present article identifies care areas where digital solutions are possible and necessary for safe patient care. In order for digital solutions and applications to be available to policyholders in the first healthcare market, producer of eHealth solutions will have to consider the goals of patient safety from the very beginning. In addition, processes and structures for proof of benefit must be implemented. (As supplied by publisher).

[Personal health records on the Internet. A narrative review of attitudes, expectations, utilization and effects on health outcomes]. / Persönliche Patientenakten im Internet. Ein narrativer Review zu Einstellungen, Erwartungen, Nutzung und Effekten.

BACKGROUND: The integration of information and communication technologies (ICT) is increasingly considered in the development of healthcare structures. This fact is also recognised in the e-Health Act. In this context, personal health records (PHR) have a specific meaning. The aim of this paper is to provide an overview on utilization, barriers and possible effects on the implementation of PHR. METHODS: This analysis is based on a literature search in Web of Science (Core Collection) (01/2000 to 12/2014) using the following terms: "personal health record", "personal medical record", "personal electronic health record", "interpersonal health record", "personally controlled health record". RESULTS: In general, patients have positive attitudes towards the electronic exchange of personal health information (PHI) on a PHR. Even the sharing of PHI with physicians, health professionals, family and friends appears to be an option for many patients. Physicians also see the potential of a PHR on the internet, but they are more critical than patients. Barriers exist towards the use of complex and non-intuitive PHR concepts along with technical faults and the lack of functionality. From the physicians' perspective, prejudices concerning the use of PHR have not been confirmed and, other than previously expected, the workload has not increased so much. However, clinical outcomes have so far been rather moderate. Stronger effects may be achieved by embedding the PHR in a broader healthcare concept. CONCLUSION: In the context of chronic disease, a connected PHR (patient-controlled, cross-sectoral, and interoperable) can be a valuable tool for organizing healthcare for patients. To take full effect, the development of such systems should focus on patients and their families as well as on physicians and other healthcare professionals. Whether the e-Health Act is a step in the right direction will have to be established by future analysis.