Managing sensitive phenotypic data and biomaterial in large-scale collaborative psychiatric genetic research projects: practical considerations.

Large-scale collaborative research will be a hallmark of future psychiatric genetic research. Ideally, both academic and non-academic institutions should be able to participate in such collaborations to allow for the establishment of very large samples in a straightforward manner. Any such endeavor requires an easy-to-implement information technology (IT) framework. Here we present the requirements for a centralized framework and describe how they can be met through a modular IT toolbox.

[Personalized medicine and individual healthcare : Medical and information technology aspects]. / Personalisierte Medizin und individuelle Gesundheitsversorgung : Medizin- und informationstechnische Aspekte.

The individualization of medicine and healthcare appears to be following a general societal trend. The terms "personalized medicine" and "personal health" are used to describe this process. Here it must be emphasized that personalized medicine is not limited to pharmacogenomics, but that the spectrum of personalized medicine is much broader. Applications range from individualized diagnostics, patient-specific pharmacological therapy, therapy with individual prostheses and implants to therapy approaches using autologous cells, and from patient model-based therapy in the operating room, electronic patient records through to the individual care of patients in their home environment with the use of technical systems and services. Although in some areas practical solutions have already been found, most applications will not be fully developed for many years to come. Medical and information technology are essential to personalized medicine and personal health, each driving the other forward.

Integration of Information for Patient Care: 2015 Redux.

Medical workstations are getting more and more powerful - however for the last decades they have been slow in making their way into the everyday life in medical care. In some resource rich organisations or smaller countries, their advance has gone further than elsewhere - however, a tipping point has not been reached. Again and again, new technologies and developments are pushing the need for integration of workstations into medical processes - currently the quantified self wave - however more options lead to more complexity and this growing complexity makes it more difficult to integrate the power of medical workstations in given culturally primed scenarios.

[The diameters of the cervical spinal cord shown by amipaque-myelography (author's transl)]. / Der Durchmesser des zervikalen Rückenmarks im Amipaquemyelogramm.

The sagittal and cross diameters of the cervical spinal cord were measured in 53 patients with cervical nerve root compression and with no evidence of spinal cord involvement, as well as in 45 patients with spastic tetraparesis and no localised space occupying lesion, and 29 patients with myelographically proven cervical myelography. The true diameters were calculated by the known magnification factor (1:1,4). Patients with spastic tetraparesis showed diameters in normal ranges, as well as widened or diminished sizes of the cord. Some of the patients with cervical myelopathy showed diminished diameters in the caudal parts. This may be a hint for a poor outcome after decompression operation.

Health informatics education in the Third World.

The state of the art is summarized showing many efforts but only few results which can serve as demonstration examples for developing countries. Education in health informatics in developing countries is still mainly dealing with the type of health informatics known from the industrialized world. Educational tools or curricula geared to the matter of development are rarely to be found. Some WHO activities suggest that it is time for a collaboration network to derive tools and curricula within the next decade.

Virtual reality in medicine.

Virtual reality (VR), as part of computer science, allows computer-based models of the real world to be generated, and provides humans with a means to interact with these models through new human-computer interfaces and, thus, to nearly realistically experience these models. This contribution explores the technical requirements for VR, describes technological advances and deficits, and analyzes the framework for future technological research and development. Although some non-medical applications are discussed, this contribution focuses primarily on medical applications of VR and outlines future prospects of medical VR applications. Finally, possible hazards arising from the use of VR are discussed. The authors recommend an interdisciplinary approach to technology assessment of VR.

[Smart cards in health services]. / Chipkarten im Gesundheitswesen.

Since the early 1980-ties it has been tried to utilise smart cards in health care. All industrialised countries participated in those efforts. The most sustainable analyses took place in Europe--specifically in the United Kingdom, France, and Germany. The first systems installed (the service access cards in F and G, the Health Professional Card in F) are already conceptionally outdated today. The senior understanding of the great importance of smart cards for security of electronic communication in health care does contrast to a hesitating behaviour of the key players in health care and health politics in Germany. There are clear hints that this may relate to the low informatics knowledge of current senior management.

[Checklist for methodological quality of guidelines. A contribution to quality promotion of medical guidelines]. / Die Checkliste zur methodischen Qualität von Leitlinien. Ein Beitrag zur Qualitätsförderung ärztlicher Leitlinien.

The society of physicians of Germany and the society of panel physicians laid down in the "assessment criteria for guidelines in medical care" what kind of demands the medical selfadministration makes on guidelines. This measure also had the goal to support and strengthen the efforts of the AWMF for guidelines of high value. On the basis of these assessment criteria, a tool was compiled for the systematic registration and documentation of quality criteria for good guidelines for the first time in areas of German language. This check list is guided by the structure and content of the "Criteria for Appraisal for National Guidelines" by the Scottish Intercollegiate Guidelines Network.

Retooling practitioners in the information age.

For "retooling" one needs two components: new hardware and new skills. "Hardware" in the Medical Informatics environment includes not only hardware in a narrow definition, but operating and application software, network services, security services etc. Since the sixties, Medical Informatics has slowly moved from fighting computer hardware to fighting the complexity of application software and its installation. Thus the hardware part in the retooling process has changed but did not decrease in importance. Retooling medical professionals also means retraining of professionals--often a major investment. Regarding the necessary skills, we have to adapt existing medical curricula and continuous medical education (CME). So far, these have not successfully been adjusted to the retooling needs. The international community has to address these matters, specifically in the context of medical curriculum and CME.

A global Intranet for an international scientific society.

The International Medical Informatics Association (IMIA) has built up a world-wide infrastructure which is using the Internet as a backbone for a global Intranet. The work has been supported by cost analysis and user acceptance monitoring. As one of the first international scientific societies, IMIA is offering professional electronic communication services to its members. This step has been taken to advance international cooperation and to support the dissemination and exchange of information on the Health Informatics Sector. The current ways of communication and Information Exchange do not meet the requirements of the Information Society because they are too slow and too expensive. The implementation of an Intranet based on the Internet provides a communication channel which is easily accessible for all IMIA members and which will allow efficient information exchange and built up links between IMIA related projects and organizations.

Recommendations on the design of hospital Intranets.

Intranets are being widely introduced in hospitals like in many other organisations. Although their development is just like setting up any other information system in a hospital, there is a tendency to neglect well established principles of software engineering and information system design in that area. Starting from a functional definition of an intranet, we illustrate its potential importance for a hospital from different aspects. A systematic framework for an iterative design and maintenance process is suggested. Some important design principles are depicted.

The need for evaluation when managing the IMIA.ORG web-site.

The International Medical Informatics Association (IMIA) has built up a web-site to support international scientific exchange and facilitate organizational tasks. Regular monitoring is required to get information on whether the site is actually used and by whom. Main aspects of the evaluation are function, structure and contents. As main evaluation methods the logfile analysis and user questionnaires are used. The number of visits to IMIA's web-site has constantly increased in the last year. In January 1998 the site had 418 visits, in December 1998 there were 6002 visits. The user questionnaire showed that the web-site offers an adequate platform for the members. It is concluded that the members as the main target group are reached by the service and in addition that the growing number of non-members require further development of the public part of the site.

Design of a virtual reality laboratory for interdisciplinary medical application.

The Department of Medical Informatics of the University of Goettingen sets up a medical interdisciplinary Virtual Reality (VR) laboratory. The interdisciplinary approach for the design of the laboratory is based on a systematic, technical and application-orientated analysis. Its result led to the decision for a CAVE-like multi wall stereo projection (MWSP) system with networked workstation hardware. Within the boundary of an exemplary evaluation of the laboratory, its technical specifications and the validity in neuropsychological tests are supposed to be improved. Both techniques, Head Mounted Display (HMD) as well as multi wall stereo projection (MWSP) systems have a high degree of immersion. MWSP systems have a lower ratio of simulator sickness and a good visual fidelity. They can also be used as a multi-user environment. Networked workstations and high-end-computers are compared in view of their costs and possible expansibility.

Suitability of customer relationship management systems for the management of study participants in biomedical research.

BACKGROUND: Longitudinal biomedical research projects study patients or participants over a course of time. No IT solution is known that can manage study participants, enhance quality of data, support re-contacting of participants, plan study visits, and keep track of informed consent procedures and recruitments that may be subject to change over time. In business settings management of personal is one of the major aspects of customer relationship management systems (CRMS). OBJECTIVES: To evaluate whether CRMS are suitable IT solutions for study participant management in biomedical research. METHODS: Three boards of experts in the field of biomedical research were consulted to get an insight into recent IT developments regarding study participant management systems (SPMS). Subsequently, a requirements analysis was performed with stakeholders of a major biomedical research project. The successive suitability evaluation was based on the comparison of the identified requirements with the features of six CRMS. RESULTS: Independently of each other, the interviewed expert boards confirmed that there is no generic IT solution for the management of participants. Sixty-four requirements were identified and prioritized in a requirements analysis. The best CRMS was able to fulfill forty-two of these requirements. The non-fulfilled requirements demand an adaption of the CRMS, consuming time and resources, reducing the update compatibility, the system's suitability, and the security of the CRMS. CONCLUSIONS: A specific solution for the SPMS is favored instead of a generic and commercially-oriented CRMS. Therefore, the development of a small and specific SPMS solution was commenced and is currently on the way to completion.

Requirements engineering for cross-sectional information chain models.

Despite the wealth of literature on requirements engineering, little is known about engineering very generic, innovative and emerging requirements, such as those for cross-sectional information chains. The IKM health project aims at building information chain reference models for the care of patients with chronic wounds, cancer-related pain and back pain. Our question therefore was how to appropriately capture information and process requirements that are both generally applicable and practically useful. To this end, we started with recommendations from clinical guidelines and put them up for discussion in Delphi surveys and expert interviews. Despite the heterogeneity we encountered in all three methods, it was possible to obtain requirements suitable for building reference models. We evaluated three modelling languages and then chose to write the models in UML (class and activity diagrams). On the basis of the current project results, the pros and cons of our approach are discussed.

Assess, compare and enhance the status of Persons with Multiple Sclerosis (MS) in Europe: a European Register for MS.

OBJECTIVES: Persons with multiple sclerosis (PwMS) experience health-related quality of life (HRQoL) problems greatly differing across Europe, and the European Union (EU) faces deep inequalities in MS management from country to country. Through the establishment of a European MS Register (EUReMS), an effective action is proposed to improve the overall knowledge on MS and support effective intervention programmes at EU and national political level. EUReMS aims to achieve consensus on its mission and vision, to define existing data providers, to develop models driving future MS health policies and research, to develop an information technology (IT) infrastructure for a data set, to develop a European shared governance and to secure providers' data provision into EUReMS. MATERIALS AND METHODS: EUReMS is meant to build on a minimum set of core data from existing national and regional population-based MS registries and from PwMS' perspectives. EUReMS' main partner is the European MS Platform (EMSP) acting in collaboration with associated and collaborating European partners. RESULTS: EUReMS was launched in July 2011. A Consensus Statement on purposes, vision, mission and strategies was produced in December 2011, and a comprehensive survey on existing MS data collections in Europe has been performed, and the EUReMS data mask is currently being discussed. CONCLUSIONS: EUReMS will represent a tool to provide up to date, comparable and sustainable MS data through an effective and credible register, which will encourage extensive knowledge building of MS, more equitable policies and higher standards in MS treatment and services.

Options for diabetes management in sub-Saharan Africa with an electronic medical record system.

BACKGROUND: An increase of diabetes prevalence of up to 80% is predicted in sub-Saharan Africa (SSA) by 2025 exceeding the worldwide 55%. Mortality rates of diabetes and HIV/AIDS are similar. Diabetes shares several common factors with HIV/AIDS and multidrug-resistant tuberculosis (MDR-TB). The latter two health problems have been efficiently managed by an open source electronic medical record system (EMRS) in Latin America. Therefore a similar solution for diabetes in SSA could be extremely helpful. OBJECTIVES: The aim was to design and validate a conceptual model for an EMRS to improve diabetes management in SSA making use of the HIV and TB experience. METHODS: A review of the literature addressed diabetes care and management in SSA as well as existing examples of information and communication technology (ICT) use in SSA. Based on a need assessment conducted in SSA a conceptual model based on the traditionally structured healthcare system in SSA was mapped into a three-layer structure. Application modules were derived and a demonstrator programmed based on an open source EMRS. Then the approach was validated by SSA experts. RESULTS: A conceptual model could be specified and validated which enhances a problem-oriented approach to diabetes management processes. The prototyp EMRS demonstrates options for a patient portal and simulation tools for education of health professional and patients in SSA. CONCLUSION: It is possible to find IT solutions for diabetes care in SSA which follow the same efficiency concepts as HIV or TB modules in Latin America. The local efficiency and sustainability of the solution will, however, depend on training and changes in work behavior.

Hospital and health information systems - Current perspectives. Contribution of the IMIA Health Information Systems Working Group.

OBJECTIVE: To celebrate over 30 years of health information systems' (HIS) evolution by bringing together pioneers in the field, members of the next generation of leaders, and government officials from several developing nations in Africa to discuss the past, present, and future of HISs. METHODS: Participants gathered in Le Franschhoek, South Africa for a 2 1/2 day working conference consisting of scientific presentations followed by several concurrent breakout sessions. A small writing group prepared draft statements representing their positions on various topics of discussion which were circulated and revised by the entire group. RESULTS: Many new tools, techniques and technologies were described and discussed in great detail. Interestingly, all of the key themes identified in the first HIS meeting held over 30 years ago are still of vital importance today: Patient Centered design, Clinical User Support, Real-time Education, Human-computer Factors and Measuring Clinical User Performance, Meaningful use. CONCLUSIONS: As we continue to work to develop next-generation HISs, we must remember the lessons of the past as we strive to develop the solutions for tomorrow.

A data protection scheme for medical research networks. Review after five years of operation.

BACKGROUND: The data protection requirements matured in parallel to new clinical tests generating more personal data since the 1960s. About ten years ago it was recognized that a generic data protection scheme for medical research networks is required, which reinforces patient rights but also allows economically feasible medical research compared to "hand-carved" individual solutions. OBJECTIVES: To give recommendations for more efficient IT infrastructures for medical research networks in compliance with data protection requirements. METHODS: The IT infrastructures of three medical research networks were reviewed with respect to the relevant data management modules. Recommendations are derived to increase cost efficiency in research networks assessing the consequences of a service provider approach without lowering the data protection level. RESULTS: The existing data protection schemes are very complex. Smaller research networks cannot afford the implementation of such schemes. Larger networks struggle to keep them sustainable. Due to a modular redesign in the medical research network community, a new approach offers opportunities for an efficient sustainable IT infrastructure involving a service provider concept. For standard components 70-80% of the costs could be cut down, for open source components about 37% over a three-year period. CONCLUSIONS: Future research networks should switch to a service-oriented approach to achieve a sustainable, cost-efficient IT infrastructure.