Needs for an Integration of Specific Data Sources and Items - First Insights of a National Survey Within the German Center for Infection Research.

State-subsidized programs develop medical data integration centers in Germany. To get infection disease (ID) researchers involved in the process of data sharing, common interests and minimum data requirements were prioritized. In 06/2019 we have initiated the German Infectious Disease Data Exchange (iDEx) project. We have developed and performed an online survey to determine prioritization of requests for data integration and exchange in ID research. The survey was designed with three sub-surveys, including a ranking of 15 data categories and 184 specific data items and a query of available 51 data collecting systems. A total of 84 researchers from 17 fields of ID research participated in the survey (predominant research fields: gastrointestinal infections n=11, healthcare-associated and antibiotic-resistant infections n=10, hepatitis n=10). 48% (40/84) of participants had experience as medical doctor. The three top ranked data categories were microbiology and parasitology, experimental data, and medication (53%, 52%, and 47% of maximal points, respectively). The most relevant data items for these categories were bloodstream infections, availability of biomaterial, and medication (88%, 87%, and 94% of maximal points, respectively). The ranking of requests of data integration and exchange is diverse and depends on the chosen measure. However, there is need to promote discipline-related digitalization and data exchange.

Extending the Minimum Information About BIobank Data Sharing Terminology to Describe Samples, Sample Donors, and Events.

Introduction: The Minimum Information About BIobank data Sharing (MIABIS) was initiated in 2012. MIABIS aims to create a common biobank terminology to facilitate data sharing in biobanks and sample collections. The MIABIS Core terminology consists of three components describing biobanks, sample collections, and studies, in which information on samples and sample donors is provided at aggregated form. However, there is also a need to describe samples and sample donors at an individual level to allow more elaborate queries on available biobank samples and data. Therefore the MIABIS terminology has now been extended with components describing samples and sample donors at an individual level. Materials and Methods: The components were defined according to specific scope and use cases by a large group of experts, and through several cycles of reviews, according to the new MIABIS governance model of BBMRI-ERIC (Biobanking and Biomolecular Resources Research Infrastructure-European Research Infrastructure Consortium). The guiding principles applied in developing these components included the following terms: model should consider only samples of human origin, model should be applicable to all types of samples and all sample donors, and model should describe the current status of samples stored in a given biobank. Results: A minimal set of standard attributes for defining samples and sample donors is presented here. We added an "event" component to describe attributes that are not directly describing samples or sample donors but are tightly related to them. To better utilize the generic data model, we suggest a procedure by which interoperability can be promoted, using specific MIABIS profiles. Discussion: The MIABIS sample and donor component extensions and the new generic data model complement the existing MIABIS Core 2.0 components, and substantially increase the potential usability of this terminology for better describing biobank samples and sample donors. They also support the use of individual level data about samples and sample donors to obtain accurate and detailed biobank availability queries.

Open data models for smart health interconnected applications: the example of openEHR.

BACKGROUND: Smart Health is known as a concept that enhances networking, intelligent data processing and combining patient data with other parameters. Open data models can play an important role in creating a framework for providing interoperable data services that support the development of innovative Smart Health applications profiting from data fusion and sharing. METHODS: This article describes a model-driven engineering approach based on standardized clinical information models and explores its application for the development of interoperable electronic health record systems. The following possible model-driven procedures were considered: provision of data schemes for data exchange, automated generation of artefacts for application development and native platforms that directly execute the models. The applicability of the approach in practice was examined using the openEHR framework as an example. RESULTS: A comprehensive infrastructure for model-driven engineering of electronic health records is presented using the example of the openEHR framework. It is shown that data schema definitions to be used in common practice software development processes can be derived from domain models. The capabilities for automatic creation of implementation artefacts (e.g., data entry forms) are demonstrated. Complementary programming libraries and frameworks that foster the use of open data models are introduced. Several compatible health data platforms are listed. They provide standard based interfaces for interconnecting with further applications. CONCLUSION: Open data models help build a framework for interoperable data services that support the development of innovative Smart Health applications. Related tools for model-driven application development foster semantic interoperability and interconnected innovative applications.

Modular ICT-based patient empowerment framework for self-management of diabetes: Design perspectives and validation results.

INTRODUCTION: It is estimated that more than 382 million people suffer from diabetes across the globe, most of which are between the age of 40 and 59 years. ICT can play a key role in better management of diabetes and in patient empowerment. Patient empowerment involves patients to a greater extent in their own healthcare process and disease management becomes an integrated part of their daily life. Self-management opens the possibility for patients to contribute to their own healthcare as well as to be more in control of their disease. OBJECTIVES: The objective of our study was to explore the impact of an ICT-based patient empowerment framework in diabetes self-management. METHODS: A modular patient empowerment framework that fosters diabetes self-management was designed and implemented. The framework incorporates expert knowledge in the form of clinical guidelines, and it supports patients in the specification of personalized activities that are based on medical recommendations and personal goals, and in the collection of observations of daily living. The usability and usefulness of the proposed framework were assessed in a pilot study with the participation of 60 patients and 12 health professionals. RESULTS: The study revealed that a patient empowerment approach based on self-management ICT tools is useful and accepted by both the patients and the physicians. For those patients who were already disciplined in their disease management the piloted solution served as a facilitator for data logging. For the rest, it served as an incentive for better adherence to disease management principles. The ICT tools prompted many patients into becoming more physically active and into making dietary habits' adjustments. However, this impact proved to be tightly correlated with the sociocultural background of the subjects. The study also demonstrated that even in patient-centric self-management interventions the physicians still have a key role to play. However, the acceptance of such interventions by the healthcare professionals depends not only on the level of impact in their patients' disease management but also on the level of impact in their workflow. CONCLUSIONS: It is evident that a patient empowerment approach based on self-management ICT tools is useful and accepted by patients and physicians. Further, there are clear indications that ICT frameworks such as the one presented in this paper support patients in behavioral changes and in better disease management. Finally, it was realized that self-management solutions should be built around the objective not only to educate and guide patients in disease self-management, but also to assist them in exploring the decision space and to provide insight and explanations about the impact of their own values on the decision.

Free/Libre open source software in health care: a review.

OBJECTIVES: To assess the current state of the art and the contribution of Free/Libre Open Source Software in health care (FLOSS-HC). METHODS: The review is based on a narrative review of the scientific literature as well as sources in the context of FLOSS-HC available through the Internet. All relevant available sources have been integrated into the MedFLOSS database and are freely available to the community. RESULTS: The literature review reveals that publications about FLOSS-HC are scarce. The largest part of information about FLOSS-HC is available on dedicated websites and not in the academic literature. There are currently FLOSS alternatives available for nearly every specialty in health care. Maturity and quality varies considerably and there is little information available on the percentage of systems that are actually used in health care delivery. CONCLUSIONS: The global impact of FLOSS-HC is still very limited and no figures on the penetration and usage of FLOSS-HC are available. However, there has been a considerable growth in the last 5 to 10 years. While there where only few systems available a decade ago, in the meantime many systems got available (e.g., more than 300 in the MedFLOSS database). While FLOSS concepts play an important role in most IT related sectors (e.g., telecommunications, embedded devices) the healthcare industry is lagging behind this trend.

Standardized EHR interoperability - preliminary results of a German pilot project using the archetype methodology.

The mobility of doctors and patients asks for multilingualism of electronic health record (EHR) systems: Doctors might face language problems using foreign medical information systems; people working abroad ask for continuous care which requires the treating physician to consult and understand the patient's health record. To address these linguistic and interoperability issues a solution is being developed that is based on widely acclaimed standards. Medical concepts that are derived from ASTM CCR define an interface model (based on ISO 13606). A server manages the data exchange between heterogeneous systems based on the interface model. It provides web services (automatic) and web forms (manual) and performs a transformation from the legacy scheme to the common structure. Furthermore, the server provides rich visualization capabilities (e.g. language-switch, custom charts etc.) which are useful for those EHR systems that don't provide these features.

Technical requirements of a social networking platform for senior citizens.

Feeling an integrative part of a social community adds to the quality of life. Elderly people who find it more difficult to actively join activities are often threatened by isolation. Social networking can enable communication and sharing activities makes it easier to set up and maintain contacts. This paper describes the development of a social networking platform and activities like gaming and exergaming all of which aim to facilitate social interaction. It reports on the particular challenges that need to be addressed when creating a social networking platform specially designed to meet the needs of the elderly.

Improvement of cross-sector communication in the integrated health environment.

Patient care is a complex process with different providers located in various institutions co-operating within an integrated health environment. In spite of technical improvements in medical care, patient information is usually exchanged by paper. Digital and timely communication between regional care providers can improve the exchange of information. Different systems and missing data standards are challenges that have to be met. ByMedConnect, a project sponsored by the Bavarian State Ministry of the Environment and Public Health, develops and demonstrates a communication solution based on the EN 13606 standard. In a first step the dataset, which will be exchanged by the care providers, is defined. ByMedConnect develops the dataset in cooperation with practicing clinicians and converts it via modeling tools into archetypes that provide the base for reliable cross-sector communication. Existing heterogeneous systems are integrated via a dedicated module that transforms legacy data into a normalized representation. Information provided in a standardized form thereby enables semantic interoperability between different systems and allows medical add-on applications to connect. A secure digital communication network guarantees easy and direct data sharing. ByMedConnect aims to evaluate the achieved theoretical preliminary work in practice and to draft approaches, which can be applied beyond the pilot application.