Information about Project 3: CICS


The major objective of the Central Information and Communication Services (CICS) is to install, operate and evaluate central IT services supporting both, the interaction of network participants and communication between the network and health care professionals, patients as well as the general public.

Specific goals are to provide communication facilities between the network participants, to deliver expert information resources, to support continuous medical education (CME) for practitioners and specialized physicians in hospitals, and to support clinical studies regarding patient recruitment, randomization and data management. It is also intended to provide services for patients that complement but don't replace the efforts of existing advocacy groups. In all cases, the predominant medium will be the internet in general and the world wide web in particular. This will also contribute to the fundamental objective of creating a visible network identity.

In order to accomplish its tasks in a manner most beneficial to the network participants and activities, CICS must conduct an initial survey to determine both the available IT-infrastructure and the detailed requirements of the network activities.

Beyond the service function that is essential for successful operation of the network, an important scientific goal of CICS is to deploy new technology and organizational structures and to assess the impact of these measures on health care delivery in the sentinel regions.

CICS will integrate all parts of the European leukemia network by promoting centralized and standardized IT systems and will therefore play a key role in the entire network

Description of work

An initial survey will be performed among the participants to assess the existing IT infrastructure that is available to the participants and - if applicable - to local partners of participants as well as the precise requirements of the other network activities, particularly with respect to the support of clinical trials, organized or endorsed by the network and its participants. This assessment is crucial to determine opportunities and limitations of integrating network activities at the technical level. It is intended to derive the necessary information by questionnaire and by visits to key participating institutions.

Experience with the national German network indicates that it is important to create a network identity and web-based information exchange as soon as possible during the initial phase of network constitution and that the internet presence due to its public visibility is a core element of this identity.

Accordingly, one of the most urgent tasks of Central Information and Communication Services in close co-operation with the other core work packages is to rapidly install an active internet presence for the network - including a web site directed towards network participants, health care professionals, patients and the general public - as well as an operational IT-infrastructure. This is, however, a complex task that ultimately relies on information becoming available from the progress of other network activities and on the results of the initial assessment. As this contrasts with the need for the network to gain public visibility as early as possible, a preliminary version of the internet presence will be installed as soon as the network is set up. This preliminary internet presence will be based upon a minimal portion of the ultimately required infrastructure. As the necessary information becomes available, the preliminary components will be replaced by more comprehensive solutions.

The first step in regard to the support of clinical trials will be the introduction of central web-based randomization and patient recruitment facility. This facility will yield a important advance in the quality of clinical trials performed by the network and can be implemented at an early stage of integration. In fact, it is likely that the limiting factor will be the development of common trial protocols with the need to obtain consent by multiple bodies - including ethical review boards - in all of the participating Member States or candidate countries. Further development of clinical trial support, specifically, with respect to web-based electronic data capture will have to take into account the results of the initial survey and, hence, requires operative flexibility.

CICS will organize workshops for specialists in the area of medical IT systems and telematics for participants on an approximately yearly basis. These workshops will serve a dual purpose. On the one hand, the current state of medical information systems relevant to the network shall be discussed and compared with established standards. The exchange is intended to contribute to the spreading of excellence in this field and shall cover at least the following aspects: basic infrastructure, security measures, exchange protocols and specialized information systems. On the other hand, the achieved and expected progress of the network's activities shall be analyzed with respect to their impact on the development of IT systems. The outcome of this discussion is likely to affect planned activities, in particular those beyond the 18-month-period.