Frank Ückert

Education 2.0 - How has social media and Web 2.0 been integrated into medical education? A systematical literature review

Objective: Present-day students have grown up with considerable knowledge concerning multi-media. The communication modes they use are faster, more spontaneous, and independent of place and time. These new web-based forms of information and communication are used by students, educators, and patients in various ways. Universities which have already used these tools report many positive effects on the learning behaviour of the students. In a systematic literature review, we summarized the manner in which the integration of Social Media and Web 2.0 into education has taken place. Method: A systematic literature search covering the last 5 years using MeSH terms was carried out via PubMed. Result: Among the 20 chosen publications, there was only one German publication. Most of the publications are from the US and Great Britain. The latest publications report on the concrete usage of the tools in education, including social networking, podcasts, blogs, wikis, YouTube, Twitter and Skype. Conclusion: The integration of Web 2.0 and Social Media is the modern form of self-determined learning. It stimulates reflection and actively integrates the students in the construction of their knowledge. With these new tools, the students acquire skills which they need in both their social and professional lives.

An international registry for primary ciliary dyskinesia

Primary ciliary dyskinesia (PCD) is a rare autosomal recessive disorder leading to chronic upper and lower airway disease. Fundamental data on epidemiology, clinical presentation, course and treatment strategies are lacking in PCD. We have established an international PCD registry to realise an unmet need for an international platform to systematically collect data on incidence, clinical presentation, treatment and disease course. The registry was launched in January 2014. We used internet technology to ensure easy online access using a web browser under www.pcdregistry.eu. Data from 201 patients have been collected so far. The database is comprised of a basic data form including demographic and diagnostic information, and visit forms designed to monitor the disease course. To establish a definite PCD diagnosis, we used strict diagnostic criteria, which required two to three diagnostic methods in addition to classical clinical symptoms. Preliminary analysis of lung function data demonstrated a mean annual decline of percentage predicted forced expiratory volume in 1 s of 0.59% (95% CI 0.98–0.22). Here, we present the development of an international PCD registry as a new promising tool to advance the understanding of this rare disorder, to recruit candidates for research studies and ultimately to improve PCD care. A registry to systematically collect data on clinical presentation, disease course and treatment of PCD http://ow.ly/TtGAR

IT Infrastructure Components for Biobanking

OBJECTIVE Within translational research projects in the recent years large biobanks have been established, mostly supported by homegrown, proprietary software solutions. No general requirements for biobanking IT infrastructures have been published yet. This paper presents an exemplary biobanking IT architecture, a requirements specification for a biorepository management tool and exemplary illustrations of three major types of requirements. METHODS We have pursued a comprehensive literature review for biobanking IT solutions and established an interdisciplinary expert panel for creating the requirements specification. The exemplary illustrations were derived from a requirements analysis within two university hospitals. RESULTS The requirements specification comprises a catalog with more than 130 detailed requirements grouped into 3 major categories and 20 subcategories. Special attention is given to multitenancy capabilities in order to support the project-specific definition of varying research and bio-banking contexts, the definition of workflows to track sample processing, sample transportation and sample storage and the automated integration of preanalytic handling and storage robots. CONCLUSION IT support for biobanking projects can be based on a federated architectural framework comprising primary data sources for clinical annotations, a pseudonymization service, a clinical data warehouse with a flexible and user-friendly query interface and a biorepository management system. Flexibility and scalability of all such components are vital since large medical facilities such as university hospitals will have to support biobanking for varying monocentric and multicentric research scenarios and multiple medical clients.

Eine modulare gesundheitsakte als antwort auf kommunikationsprobleme im gesundheitswesen

Since 2000 the University of Muenster has developed an electronic health record (EHR) called „akteonline.de“. Several clinics and departments use the EHR in routine. „akteonline.de“ in its current structure supports patients as well as health care professionals and aims at providing a collaborative health information system which perfectly supports the clinical workflow even across institutional boundaries. In order to fulfill high data security and data protection requirements strictly, complex encryption, authorization and access control components have been developed.The IT-structure of the German health care system is very heterogeneous and peripheral. The thereby generated additional costs in the economic and social area are comprehensible and the patient is unable to claim the central position intended by politics and society. The development effort of „akteonline.de“ currently focuses on the introduction of an electronic foundation for an „integrated care“. For that communication possibilities for different clinical systems, like systems for physician or clinical information systems as well as communication possibilities between different departments in a hospital or networking between Institutions and the patient himself, have to be provided. The various needs of the institutions and people involved, have to be considered individually within one concept.Based on gathered experiences and with regard to increasing requirements in the areas of interoperability, integration and international cooperation the system architecture and the basic data model underwent several evolutionary enhancements. The focus of this paper lies on describing the use of new technologies and open standards in order to create and enhance a loosely coupled, modular and flexible EHR, that represents a common information and communication tool for patients and health care professionals.

A RESTful interface to pseudonymization services in modern web applications

BackgroundMedical research networks rely on record linkage and pseudonymization to determine which records from different sources relate to the same patient. To establish informational separation of powers, the required identifying data are redirected to a trusted third party that has, in turn, no access to medical data. This pseudonymization service receives identifying data, compares them with a list of already reported patient records and replies with a (new or existing) pseudonym. We found existing solutions to be technically outdated, complex to implement or not suitable for internet-based research infrastructures. In this article, we propose a new RESTful pseudonymization interface tailored for use in web applications accessed by modern web browsers.MethodsThe interface is modelled as a resource-oriented architecture, which is based on the representational state transfer (REST) architectural style. We translated typical use-cases into resources to be manipulated with well-known HTTP verbs. Patients can be re-identified in real-time by authorized users’ web browsers using temporary identifiers. We encourage the use of PID strings for pseudonyms and the EpiLink algorithm for record linkage. As a proof of concept, we developed a Java Servlet as reference implementation.ResultsThe following resources have been identified: Sessions allow data associated with a client to be stored beyond a single request while still maintaining statelessness. Tokens authorize for a specified action and thus allow the delegation of authentication. Patients are identified by one or more pseudonyms and carry identifying fields. Relying on HTTP calls alone, the interface is firewall-friendly. The reference implementation has proven to be production stable.ConclusionThe RESTful pseudonymization interface fits the requirements of web-based scenarios and allows building applications that make pseudonymization transparent to the user using ordinary web technology. The open-source reference implementation implements the web interface as well as a scientifically grounded algorithm to generate non-speaking pseudonyms.

Adopting Quality Criteria for Websites Providing Medical Information About Rare Diseases

Background The European Union considers diseases to be rare when they affect less than 5 in 10,000 people. It is estimated that there are between 5000 and 8000 different rare diseases. Consistent with this diversity, the quality of information available on the Web varies considerably. Thus, quality criteria for websites about rare diseases are needed. Objective The objective of this study was to generate a catalog of quality criteria suitable for rare diseases. Methods First, relevant certificates and quality recommendations for health information websites were identified through a comprehensive Web search. Second, all considered quality criteria of each certification program and catalog were examined, extracted into an overview table, and analyzed by thematic content. Finally, an interdisciplinary expert group verified the relevant quality criteria. Results We identified 9 quality certificates and criteria catalogs for health information websites with 304 single criteria items. Through this, we aggregated 163 various quality criteria, each assigned to one of the following categories: thematic, technical, service, content, and legal. Finally, a consensus about 13 quality criteria for websites offering medical information on rare diseases was determined. Of these categories, 4 (data protection concept, imprint, creation and updating date, and possibility to contact the website provider) were identified as being the most important for publishing medical information about rare diseases. Conclusions The large number of different quality criteria appearing within a relatively small number of criteria catalogs shows that the opinion of what is important in the quality of health information differs. In addition, to define useful quality criteria for websites about rare diseases, which are an essential source of information for many patients, a trade-off is necessary between the high standard of quality criteria for health information websites in general and the limited provision of information about some rare diseases. Finally, transparently presented quality assessments can help people to find reliable information and to assess its quality.

Towards better social integration through mobile web 2.0 ambient assisted living devices

Within a few decades, the number of elderly people in Europe and Northern America will increase significantly. One of the challenges of this development is to keep elderly people integrated in society. We present a prototype for a Web 2.0-enabled ambient assisted living (AAL) device that offers easy-to-use functionality to help elderly people keep and establish new contacts, find events that match their interests and be aided in sustaining their mobility. An evaluation with probands from the target group indicates that such a device can improve an elderly persons social life.

OSSE – open source registry software solution.

Project goal OSSE (Open Source-Registersystem fur Seltene Erkrankungen in der EU / Open Source Registry System for Rare Diseases in the EU) provides patient organizations, physicians and scientists with open-source software for the creation of patient registries. As a result, the national registry landscape is improved to comply with European principles regarding e.g. minimum data set and data quality, as summarized in the EUCERD recommendation on rare disease registries. Also, the necessary interoperability is achieved to facilitate federation of those registries on a national and international level.

An Architecture for Translational Cancer Research As Exemplified by the German Cancer Consortium

Networking of medical institutions by means of a capable data infrastructure has the potential to open up vast amounts of routine data to translational cancer research. However, the secondary use of information collected independently in several institutions is a challenging task of data integration. In this review, we discuss the requirements and common challenges involved in the establishment of such a platform. We present methods and tools from the field of medical informatics as solutions to semantic and technical heterogeneity, questions of data protection and record linkage, as well as issues of trust and data ownership. We also describe the architecture of an existing cancer research network as an exemplary application of these methods.

Strategien zur Vernetzung von Biobanken

ZusammenfassungHintergrundNicht selten benötigt ein medizinisches Forschungsvorhaben mehr biologisches Material, als in einer einzigen Biobank verfügbar ist. Daher unterstützt eine Vielzahl von Strategien das Auffinden potentieller Forschungspartner mit passenden Proben, auch ohne dass diese zuvor in einer zentralisierten Sammlung zusammengeführt werden müssen.ZielDer vorliegende Beitrag beschreibt die Klassifizierung verschiedener Strategien zur Vernetzung von Biomaterialbanken, speziell zur Probensuche, sowie eine IT-Infrastruktur, die diese Ansätze kombiniert.Material und MethodenBestehende Strategien lassen sich nach drei Kriterien klassifizieren: a) Granularität der Probendaten: grobe Daten auf Bankebene (Katalog) vs. feingranulare Daten auf Probenebene, b) Speicherort der Probendaten: zentrale (zentraler Suchdienst) vs. dezentrale Datenhaltung (föderierte Suchdienste) und c) Automatisierungsgrad: automatisch (abfragebasiert, föderierter Suchdienst) vs. halbautomatisch (anfragebasiert, dezentrale Suche). Alle genannten Suchdienste setzen eine Datenintegration voraus; dabei helfen Metadaten bei der Überwindung semantischer Heterogenität.ErgebnisseDer „Common Service IT“ in BBMRI-ERIC („Biobanking and Biomolecular Resources Research Infrastructure-European Research Infrastructure Consortium“) vereint einen Katalog, die dezentrale Suche und Metadaten in einer integrierten Plattform, um Forschern vielseitige Werkzeuge zur Suche nach passendem Probenmaterial zu geben und bei den Biobankern gleichzeitig ein hohes Maß an Datenhoheit zu bewahren.DiskussionTrotz ihrer Unterschiede schließen sich die vorgestellten Strategien zur Vernetzung von Biomaterialbanken gegenseitig nicht aus. Vielmehr lassen sie sich in gemeinsamen Forschungsinfrastrukturen sinnvoll ergänzen und sie können sogar voneinander profitieren.AbstractBackgroundMedical research projects often require more biological material than can be supplied by a single biobank. For this reason, a multitude of strategies support locating potential research partners with matching material without requiring centralization of sample storage.ObjectivesClassification of different strategies for biobank networks, in particular for locating suitable samples. Description of an IT infrastructure combining these strategies.Materials and methodsExisting strategies can be classified according to three criteria: (a) granularity of sample data: coarse bank-level data (catalogue) vs. fine-granular sample-level data, (b) location of sample data: central (central search service) vs. decentral storage (federated search services), and (c) level of automation: automatic (query-based, federated search service) vs. semi-automatic (inquiry-based, decentral search). All mentioned search services require data integration. Metadata help to overcome semantic heterogeneity.ResultsThe “Common Service IT” in BBMRI-ERIC (Biobanking and BioMolecular Resources Research Infrastructure) unites a catalogue, the decentral search and metadata in an integrated platform. As a result, researchers receive versatile tools to search suitable biomaterial, while biobanks retain a high degree of data sovereignty.ConclusionsDespite their differences, the presented strategies for biobank networks do not rule each other out but can complement and even benefit from each other.