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.

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.

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.

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.

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.

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.

[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.

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.